Sunday, December 30, 2012

And Again!

I've been working on this specific post for a couple of days now. Mostly because it's a bit emotional, but also because I feel such disbelief that this is happening, still.

Previously I've mentioned how hard it is for family and friends to comprehend fully just what Hashimoto's Thyroiditis means to those who have it and those around them. It's hard for doctors to know everything about every single disease or condition, so it is completely understandable that family or friends will forget all about this disease during the busy days of the holidays.

So the part that I find so frustrating now, is knowing how long and hard I've worked to do the research on this disease, find out what works, then take the time to put it in this blog to share with those I know, only to be told "You shouldn't have changed your thyroid medication."  What???

Well, we can't correct everyone's ignorance, regardless of who they are.  That was a case of pure ignorance.  My family member that I quoted above is not educated enough to have an opinion in this matter.  It also doesn't change the fact that this information is openly available for people - including said family member - to read, yet it was merely tossed aside like yesterday's garbage.

We will always run into those people.  It's hurtful.  It's confusing. It makes you think "Don't you believe me?",
 "I'm your daughter/sister/brother/son, and you don't believe me?"  The truth is, some people, for whatever excuse they choose to use, are just too closed-minded.  Shame on them.  I hope they don't prevent someone from getting this information and/or getting the right treatment.  No one should have to suffer because a family member is ignorant. Every person on this earth deserves the best health care and treatment available.

So if you know someone with Hashimoto's disease, Hypothyroidism, or even if it's merely suspected. Share my blog. There's probably something that will help them.  If we don't help each other, who will?

Saturday, December 08, 2012

Do I Need Supplements?

If you've read my previous posts, you already know that I take supplements to help my thyroid medication work and to make me feel better.  I read many, many posts in the numerous thyroid groups I'm in, from people who take several different supplements.  Most don't feel better and can't really figure out why.

I think it's human nature to rush things.  We think "if I take all these, I'll be 100% by tomorrow or the next day".  Unfortunately, it doesn't work that way.  So when day 5 of taking 18 different supplements comes, and nothing is better, you have to stop and figure out why.  Which one(s) aren't doing anything? Perhaps some are blocking others from working, or perhaps there's just too much all at once and the body hasn't figured it all out yet. I've done that. I've tried too many things at one time to know what works and what doesn't.  Lucky for me, I hate taking pills, so one day I just stopped all of them except my thyroid medication.

So what I learned was, I didn't actually need them all.  I still take B5 (pantothenic acid) with meals because those with Hashimotos have digestive issues.  I take my thyroid medication split into 3 doses because my body requires it that way to function it's best. And I take adrenal support in order to sleep when I should and be awake when I should.

Now, there's many other supplements that advertise they boost thyroid production.  Perhaps they do and perhaps they don't.  But how will you know what works for you?  It's all so individual. Testimonials for products have to be read with a certain amount of disbelief.  Nothing works for everyone. There's no 'one size fits all' in medications or vitamins. We all know that. So it's very important to research what they are.  Just because an herbalist/Naturopath recommended them, doesn't mean they're what you need. The problem with the time-constrained office visit is that no one is perfect. When we see our doctor, it's very possible we've forgotten to mention a symptom or a supplement we're taking. Sometimes we have had a symptom for so long that we completely forget about it.  And sometimes it may be a matter of, if we've mentioned it before but felt ignored/brushed off by our doctor, we don't mention it again. This is something that makes a doctor's job very difficult.

So the best way to choose?  Do the research, ask your doctor about them, then test them out one at a time.  Some may take weeks to see the full impact. Don't be in a rush. Rushing things may hurt you more than help you, and some products may just be a waste of money.  So hang in there, be safe, and just know that you will get better.  

Sunday, December 02, 2012

6 Months After Starting NDT

As Christmas approaches, I look back over the past 6 months since I started taking Erfa Thyroid.  I feel so much better; so much like my body has returned to normal. Let me say that again. NORMAL.  I knew I'd feel better, but to feel like a normal person?  My heart's wish come true.  Erfa Thyroid truly has exceeded all of my expectations. I still get tired some days, but it isn't every single day, and I'm sure it's normal to feel tired when you've been doing too much.  There's that word again. Normal.

With Hashimoto's disease, there's no such thing as perfect.  Medicine just isn't that advanced. Take the good and the bad and hope for the best.  I expect some sort of setback.  Every season brings different symptoms, different medication needs.  Unfortunately, unless the doctor has Hashimoto's disease, he/she won't think to make the necessary adjustments for each seasonal change.  Some people need a higher dose in the winter and some need a higher dose in the summer.  It's not even possible to get a doctor to order tests that often. So what's the solution? Adapt. Learn to cut out tasks. Maybe you don't need to vacuum every single day during those months when you'd really rather be on a higher dose of Erfa Thyroid.

This week I'm getting the house ready for Christmas and I don't worry that I'm going to run out of energy before I'm finished what I'm doing.  I don't have that constant muscle and joint pain from head to toe.  My hair stopped falling out.  I can go shopping for hours and not need a nap.  I sleep well at night now.  And I almost never get anxiety, or if I do, it passes quickly.  Because of all of this, my stress level is way down, allowing me to enjoy my days.  I think this is what normal is like.

Thursday, August 23, 2012

Up? Down? Good? Bad? Pause?

I'd like to put something cryptic here, but the fact remains that I'm in a state of waiting. I'm testing things out. Taking adaptogens every day, sticking to the same dose of my thyroid medication, and trying to get to bed at 10pm every day. The bed time is the killer so far. I'm just not sticking to it, which means my cortisol is not being produced like it should, which means I'm tired. Very tired every day. Without proper rest, things are taking longer. My adrenals can't heal if I don't get my rest, and I need my rest at the proper time of day, which is between 10pm and 7am. Napping in the afternoon isn't really the best way to catch up on sleep. Maybe I need to adopt my parents' house rules where 9pm is lights out. Of course that never worked when I lived there, so I can't imagine it would work now.

So I'm just waiting. Once I get my sleeping patterns fixed, then my adrenals will follow suit. I've read it can take 2 years or more to heal the adrenals. Seems like such a long time. But when I think about it, I've never slept at night without the help of some sort of sleeping aid. Alcohol was a big help during my high school and college years. Alcohol also helped wear down my adrenals too. Nowadays I'm just living 'clean' as some call it. Nothing except non-manufactured foods. Yes, I crave chocolate so much I dream about it. LOL. At least I know things will get better and the weather is beautiful. Since I have to wait, this is the time of year I'd choose to do it.

I've had lots of people over the years, tell me that everyone has logical places to pause in their life. Whether it's to learn a lesson, teach one, or just reflect upon ourselves. I guess this is one of those for me. A logical place to pause in my life. I have no idea what this pause in my life is for, but I think I'll do my best to find as much peace as I can.

Tuesday, August 07, 2012

Lose Weight

Seems like such a simple request. The problem is, when you have Hashimoto's disease, you have to choose very carefully where you use up your energy. No matter what commercials say, energy doesn't come in a bottle. So in order to workout, I would have to skip making the bed, making breakfast, walking the dogs, or getting dressed. I would hope my jammies are up to par, because there won't be the energy to go buy more for at least a couple of days. I would also have to take into consideration that I'd need to shower and change my clothes when I'm done my workout.  Usually, that ends up being a bath so I can sit while waiting for the tub to fill, sit and take my time washing, then sit on the edge of the tub to air dry because I won't have the energy to dry off. Then it's nap time. So much for that after workout protein I'm suppose to eat. Oops! I'm still in my towel. No energy left to put clothes on. But my dogs want outside again. Sure wish someone was here to take them out. Polar has to stay leashed because he has a torn ACL and isn't allowed to run yet.

Now, even though I'm getting better, I still have to consider carefully what I'm going to do today and what I will have to put off for another day. I can take my dogs outside several times a day now, I can make something to eat once or twice a day now, and I can shower and get dressed every day now. Big improvement. But I still have to be careful when I want to workout. I like to do my TurboFire or P90X workouts, but then I'm done for the day. So I cut the workouts short, because I will need to shower and change too. Then I barely have the energy to make a protein shake and sit with the pups outside afterwards. I know the pups would like to walk around, but they see I'm out of energy, so they sit with me.

As for eating. Well, mostly that's a no-no. Protein shakes make up the majority of my meals. Partly because of the calorie content, vitamin content and partly because it doesn't require a ton of energy to make. But you do what you have to do. Adapt and change. Since we can't change this disease, we have to change ourselves and what we do.

Monday, August 06, 2012

How Do I Feel?

Well, today I'm feeling pretty good. Actually, most days I'm pretty good now. It still amazes me that a synthetic thyroid T4 medication could make me feel so crappy. But I still wake up mentally prepared to be in crippling pain, ready to take some pain killers before I get out of bed. So when I roll over and realize I'm not in pain, I smile. It's nice to wake up now. It's nice knowing I can get up, shower, get dressed, and not be completely worn out. I'm beginning to adapt to this new life and this new body. I often forget that I'm not going to be exhausted just by walking to the washroom. I even still mentally plan a nap before I have to go anywhere. I still think about limiting the things I need to do in a day so I won't run out of energy before tasks are finished. Doing more than one load of laundry in a day feels very strange to me. Before I switched to NDT, I had days that I could barely load the washing machine and the clothes would sit in there for another day or two before I would have enough energy to put them in the dryer. And then it would be another day or two still before the pain would subside enough for me to put the clothes on hangers. Forget about carrying them all to my closet. It was easier to dress in the laundry room, stick to clothes I could wash together, and put the dirty clothes directly into the washer.

Ya. I don't miss those days. I won't forget them, that's for sure, but I won't miss them. I'm still not 100%, but in comparison to what I was before, I'm doing amazing. I still have to figure out these adrenals, get my sleeping patterns fixed, and then wait for my doctor to increase my dose of NDT until I'm good. Should only be a few more months.  

Sunday, July 29, 2012

Adrenals

Living a very stressful life will eventually wear out the adrenal glands. A stressful job, drinking coffee, energy drinks, consuming fast foods, alcohol, staying up late on a regular basis. All things that will wear down the adrenal glands, yet we do them. It's a common sight to see people with a coffee in their hand no matter what time of day it is. I've done it myself. Having that after supper coffee was a regular thing to do. Part of relaxing at the end of the day. Too bad I didn't know I was killing my adrenal glands. So how do I fix my adrenals?


Right now that's the number one question. Based on everything I could find out there on the www, there are a few things I can do to help my adrenals. Avoid caffeine and all of the things I have above, go to bed at the same time every night, find a way to de-stress every day, and take an adaptogen. 


According to Wikipedia, "An adaptogen is a metabolic regulator which increases the ability of an organism to adapt to environmental factors, and to avoid damage from such factors." 


Now, I originally had a list of adaptogens here, but I don't want to encourage people to run out and buy them. I have no idea if they will cause allergic reactions, change the way medications work, or if they will help at all. I mentioned them because they are discussed in so many websites in connection to adrenals.  

So, if doing those things for the next 6 months to 2 years will help my adrenals, and if healing my adrenals will help with my Hashimoto's Disease, how could I possibly not do it? (everything except take adaptogens, that is) 


edited to add:
Someone pointed me to this site. I think it's a good guide to adaptogens.
http://www.adrenalsweb.org/isocort-and-glandulars.php  






Hot?

I'm hot. Every night I'm hot. No, I don't mean hot flashes. I'm not old enough for those yet. Instead, I get hot. At night, after the sun goes down, when I should be in bed sleeping. That is when I get hot. I feel the need to pant like a dog. Instead, I change into a tank top and sit in front of a fan. I'm happy it's not night sweats! I even get the same hot sensation if I nap during the day. So right now I'm doing some research on sleep and adrenals. It's my understanding that when cortisol levels are off, adrenals are not working properly, and therefore, the body temperatures will be off also. I'm trying out Melatonin at night. It's suppose to help me get to sleep, but it's not intended as a permanent fix. Which means I have to fix the problem while I'm able to take the Melatonin.

Update on my Erfa Thyroid: I'm now taking 60mg in the am and 45mg in the pm. My next doctor's appointment is at the beginning of September. 

Monday, July 16, 2012

If You Think You Have Thyroid Disease

I'm adding this in here because I see it all the time in those thyroid groups. Someone comes in who insists they have thyroid disease and it's their doctor who refuses to give them a proper diagnosis. They post their labs and ask "what do I do?".  Well, the problem I see, is that they have test results all within range with a TSH that is a little bit high. But it's evident from the rest of their labs that they either have poor eating habits or they need some vitamin supplements. Low vitamin D, iron, ferritin, B12. Being low in all of those will make you feel terrible and have very little energy. Now, in all these groups, they say TSH is virtually meaningless, yet they will push someone to "fire" their doctor and find a new one who will give them thyroid meds based solely on that slightly high TSH. Hmmm...that doesn't sound quite right to me. Wouldn't it be better to work on the low vitamins before jumping to the conclusion it's a thyroid problem? Of course the TSH is a little high - with the body in such short supply of all those necessary vitamins, what could you expect?

It's great to help people who have thyroid disease, but it's better to not push thyroid medication until the vitamin deficiency is taken care of first. Taking thyroid medication when you don't need it can do the thyroid harm, make it sluggish. In a healthy person, the body will adapt and slow down it's own production of the thyroid hormones, so there would actually be no purpose to taking it. Plus, keep in mind that there are side effects to all medications. Why give yourself those side effects when you don't have to?

Even though it is never the intention of those groups to cause harm, sometimes I feel the overzealous members get out of hand and people need to take a step back to get a better look at the whole picture. Find out more information before jumping to the conclusion that person has a bad doctor. Chances are, we aren't getting the whole story. If we don't ask, of course, how would we know? Making the assumption that the doctors are at fault may not always be what's in the best interest of the patient. We do have some really great doctors, and sometimes I think those groups are very judgmental. I think it's unfair to label a doctor a jerk, or out of touch, when they've probably been given much more information than what's been posted in the group pages. Perhaps that doctor is thinking along a step by step process. Fix the vitamin deficiency, and if symptoms persist, THEN check the thyroid again. It's a logical way of doing things. We don't just jump into surgery because we have a tummy ache. It may not be the appendix. Maybe it's just gas. Perhaps doctors need to be given a little more credit. Dealing with thyroid disease is not an overnight quick fix thing anyways, so slow down, and take things one step at a time.

Saturday, July 14, 2012

Progress?

I'm never sure if I'm really getting better or not. I do feel better, and I'm down 4.2lbs since starting Erfa. But I just hate to get my hopes up. What if this isn't permanent? What if I start gaining weight again. What happens if I start feeling super tired again? I've had a couple of days in a row now that I've been tired. I think that may be my allergies. I tried CoQ10 and ended up with hives, bad asthma attacks and really bad allergies. So I've slept quite a bit over the past 2 days. I'm now on 45mg of Erfa in the morning and 45mg Erfa in the afternoon. Today I feel hyper. I never felt hyper on 200mcg of Synthroid, so this feeling is new to me. Of course, this whole experience is new to me. It's exciting to feel better. I am so elated to not have that all over body pain. OMG - brushing my hair!!! It's not falling out anymore!!!! Makes me wonder how many symptoms I attributed to Hashimotos when it was probably the Synthroid. I could just kick myself sometimes that I thought it was all my disease. All this time I was suffering when I could have been feeling just fine. But I guess I'm just like so many others out there. I had no way of differentiating between side effects of Synthroid and symptoms of Hashimotos Disease. I sincerely hope someone out there reads this. If this changes one person's life - stops some of the suffering of one person...

I know I don't have to share my experiences. And perhaps I tend to ramble in some places. But I keep thinking that I may have a relative or friend out there who has to deal with thyroid disease and they may feel alone. No one should ever feel alone. Especially with thyroid disease. We didn't cause it. We didn't do anything to bring this on ourselves. And most importantly, we should not feel ashamed to have it. I know some people post in thyroid groups under a false name to hide their identity. WHY? They don't want their friends and family to know what they're going through. What's the point of that? How will hiding it help anyone? There is absolutely nothing wrong with us. We have a disease. It's not contagious. Is this 100 years ago when they would make people out to be a pariah if they had Hashimoto's? NO. This is 2012. Get out there and share. Friends and family are there for support and love. There's absolutely no reason to hide. I'm actually quite angry that people want to hide it. How do they expect to get the help they need if they don't tell anyone? How are we suppose to get more people donating to thyroid research if we all run and hide? It's extremely counterproductive. I think I could rant on and on, so I will just end this for today. DON'T HIDE IT - IT ISN'T YOUR FAULT YOU HAVE THYROID DISEASE!!

Tuesday, July 10, 2012

I'm Actually Feeling Better

I've been doing so much yard work lately. And that's not a complaint. I'm so happy that I'm actually able to do yard work. I even did a bit this morning too. If you had asked me a month ago to do yard work, or anything physical 4 or 5 days in a row, I would have laughed. Something like that wasn't possible. Thinking about it would make me need a nap. I feel like I need to pinch myself sometimes. Is this real? Can I really be getting better? Is this possible? Is this too good to be true? Is it going to just stop one day and allow all those symptoms to come back? I really hope not.

Today I noticed my hair brush isn't full, the shower didn't have a gob of hair in the bottom after my shower, my feet and ankles don't ache, my hands don't ache. My whole body doesn't ache! I have sore muscles from doing all that yard work, but that's suppose to be there. I'm happy to have muscle aches! Isn't that crazy? Being grateful for muscle aches - never thought that would ever happen. But it means my muscles are working and regenerating. Such a great feeling!  I'm actually feeling better! Maybe thinking I'm going to have a normal life is not like asking for a miracle.


Sunday, July 08, 2012

Patience

Today I was really disappointed that I couldn't just go outside and do yard work. I accomplished so much yesterday and the day before - why not today? I was able to do less yesterday than the day before, but sore muscles can do that. And I'd rather have sore muscles than complete exhaustion. So, not being able to do as much today? Well, I'm still on a low dose of NDT. Switching from T4 only to NDT takes time. Some days I'll feel better than others. I had that on the T4 treatment. The only difference is that I still feel better on NDT. But I won't have a ton of energy every single day until I'm on an optimal dose. I'll probably get to 3 or 4 grains total per day before I'm optimal and finally feeling human again. In the meantime I have to have patience. Raising my NDT 1/4 grain every 2 weeks takes time. (For reference,1 grain = 60mg erfa thyroid.) Right now I'm on 3/4 grain in the morning and 1/2 grain in the afternoon. On July 16th I should be raising it to 3/4 grain in the morning and 3/4 grain in the afternoon. I look forward to every single dose increase.

Since I've been taking adrenal support, I've noticed I sleep better at night. I think I've had insomnia most of my life and waking up feeling refreshed is quite a new feeling for me. I don't have a good sleep every night yet, but I really enjoy it when I get it now.

Eating healthy is so important for everyone. Even those without any health concerns. Chemicals and factory made foods just can't be considered nutritious. Many Hashimoto's patients find out they have an intolerance for several foods like gluten or dairy. Perhaps it is an intolerance to processed foods brought on by T4 only treatment? Food for thought. But you can't go wrong if you eat something that had to be grown.

Seems like Hashimoto's is just something you can't quit on. Don't stop looking for answers. Don't just give up and accept feeling crappy. Try eating organic foods, treating your adrenals, getting your rest and cutting down stressful situations. At the very least, those things will make you feel healthier and help you live longer.

Friday, July 06, 2012

Muscles

Those who have been dieting have probably read that muscle burns fat. Sort of. Muscle burns more calories than fat does. Fat produces hormones that store more fat. So in my quest to gain muscle and burn fat, I have spent hours upon hours over the last 6 years lifting weights, doing P90X among other extreme workouts, trying to build up muscle. It didn't work. In 6 years have lost so much muscle on the T4 only treatment that I'm almost at the point of asking my 75 year old neighbour to open my jar of pickles. How embarrassing is that.

Today I noticed a difference. While doing some yard work, I could actually feel my muscles working like they should be. Weak, yes, but working. Being on NDT for a little more than 2 weeks, I'm actually starting to build some muscle back. I can't believe I didn't make the connection between T4 only treatment and the loss of muscle mass until after talking to other thyroid patients. I'm also not completely worn out. I don't think I could have made it through 2 hours of raking and shoveling gravel and dirt 3 weeks ago. Probably half an hour and I would have had to nap.

Now, I know some people do really well on T4 only, but I guess I'm just not one of them. It probably helps that I'm taking steps to repair my adrenals, which helps me sleep, which helps my cortisol levels, which makes my NDT work better, which makes me feel better. Brick upon brick we build things. Never give up.

Wednesday, July 04, 2012

T4 or NDT

When I found STTM, I read the posts from the members. Then I checked out the links. I think I read them for 2 days before I phoned my doctor to get an appointment. Now, I'm pretty skeptical of things - thanks to the diet industry and their "testimonials", so I researched as much as I could. Unfortunately, there's just not a lot of information out there that didn't lead me back to the STTM website. Janie Alexander Bowthorpe has done an amazing job with STTM - Thank you Janie! I recommend everyone check out her website. There's actually so much to learn from that site that it's just not possible for me to put it all here. But I will say that healing the adrenal glands and getting the cortisol levels fixed is super important. Instead of getting into all that, I will tell you what I've done and how I feel.

Two weeks today, I started on NDT - Natural Desiccated Thyroid - A brand called Erfa Thyroid. I was on a total of 187.5mcg of T4 then switched to a much smaller dose of 30mg of NDT twice a day. Doctors do this because it's a change from T4 only to T4 with T3. I think it's standard procedure, but it's also an excellent way to do it. My doctor prescribed me 60mg twice a day, but because I've been on such a high dose of T4, I started with 30mg twice a day.

The first 4 days I felt ok. A little 'funny', a bit tired, but ok. I know from STTM that I needed to be on 30mg twice a day for 2 weeks to help my system get rid of the synthetic/excess T4. Days 5 to 9, I started to feel less joint and muscle pains. Days 10 and 11, I was tired. Very sleepy. So I rested often, napped often.

Now, to back up a little bit, I started some adrenal support on day 3 or 4 - I can't remember which. (My adrenal support includes avoiding caffeine completely, taking Vitamin C with bioflavonoids, Vitamin D, Iron, and Siberian Ginseng.) And I started making sure I went to bed by 11pm at the very latest. I also included melatonin at night to help me get to sleep. It's not perfect, but so far it's helping by leaps and bounds.

On day 11, I was so extremely tired, I decided I could probably increase my NDT the next day. So that's what I did. I now take 45mg in the morning and 30mg in the afternoon.  I know I'm still on a very low dose of NDT and I will have to have it increased, but I'm amazed at how much better I feel. I'm tired, but not exhausted, and about 90% or better of my body aches are gone. I know I'm not on an optimal dose yet. I've only just begun. So far things are looking up. :)

New - New to me, Anyways.

It's been quite a while since I last posted. Mostly because I really wasn't feeling 100%.  I didn't understand how I could be taking 175mcg + 12.5mcg (1/2 of a 25mcg) of Synthroid every morning and still not be feeling better. I don't mean that I felt as horrible as before taking thyroid medication, I just mean that I wasn't feeling as good as I thought I would.

Symptoms of Hashimoto’s Disease
  • Depression
  • Mania 
  • Fatigue 
  • Panic Attacks 
  • Weight Gain 
  • Sensitivity to Hot and Cold 
  • High Cholesterol
  • Migraines
  • Memory Loss 
  • Cramps  
  • Hair Loss
  • Infertility

Here are the symptoms that started AFTER I began taking Synthroid:

1. body aches and pains equal to having the flu
2. hair loss -- getting sunburn on the top of my head through my hair
3. complete exhaustion - equal to having the flu
4. sleep disturbances
5. weight gain - (something that's not suppose to happen if on an optimal dose of T4) I did a 30 day regime of P90X at lunch and 2 hours on the treadmill after supper with only losing 1lb at the end of those 30 days. I was fully committed to an extremely healthy eating plan, so you can imagine my frustration!
6. Muscle deterioration

I do understand that nothing man-made will be as good as what the body can supply, so I never expected perfect. I did however, expect to get better with time. In 6 years of being on Synthroid (T4 only), I didn't feel better. The body aches and pains actually increased. And yet, I just thought I had to endure.

One day about 3 weeks ago, I was searching Facebook for a support group. I didn't really expect to find anything. I wasn't looking for some place to complain and accomplish nothing. That wasn't going to help.
What I did find was exactly what I needed. STTM.

Stop The Thyroid Madness (STTM) - great information! I can't even express how happy I am that I stumbled across them!!

Tuesday, March 20, 2012

Keep Going

Even though there are many days when I feel like giving up, I don't. I just keep going. Staying as positive as I can is the best way I know to get through those terrible days. Think positive. Tomorrow will be better. Or next week will be better. Or this afternoon will be better. Hashimoto's sure has made me much more aware of the things around me. I'm able to be content with the things I have, where I live, and I'm even able to appreciate the weather. I enjoy things so much more now because I have the days when I'm not able to go outside or play with my dogs. I'm so happy to have the good days. Of course I still hate this disease, and I get so angry that I have it. I think it's not fair. Why me? After everything else that I've lived through, why did I have to have this too? When there's so many horrible and selfish people out there, why did I have to be the one to get this disease? What did I do to deserve it? But some questions don't have answers. Some things are just not for us to know. Little comfort, I know. Perhaps some day, someone out there will figure out this disease. It won't be in my lifetime, of that I am certain. But it's no reason to let this disease beat me. I will enjoy what I can. Nothing can stop me from enjoying sunny, warm days, watching snow fall, seeing new plants emerge in the spring, or the changing colours of fall. My good days or good hours are spent enjoying life. I guess if there's a lesson in all of this, it's to be grateful for what you have, and place more importance on the good things in your life than the bad things.

Wednesday, February 22, 2012

Thyroid Foods

I guess, as with any disease, nutritional information changes constantly. Coffee is a perfect example. One day it's bad for you, the next it's good in moderation. Over the past few years I have noticed there's some confusion regarding kelp/seaweed and soy products for a person with hypothyroidism and hashimoto's disease.

Here is what I know. The reason some doctors suggest eating kelp/seaweed is for the iodine. In very small amounts it can be beneficial for the thyroid. BUT, it's not something that any person should eat unless they are tested for iodine deficiency. Too much iodine is bad for the thyroid also. So if you're taking a supplement with iodine in it, please make sure you've been tested FIRST and found to be iodine deficient. In Canada and the United States, iodine is in our food. Table salt, fertilizers on the foods the animals eat, fresh produce. Chances are, we are getting too much to begin with, so it's probably best to avoid it until tests show it's needed. Below is a website you can check out with a little bit of information.

http://standing1.home.mindspring.com/thyroid/badfood.html


Soy products. Wow. Soy is in almost everything that has been manufactured. Even dog food. It is extremely versatile as something I call a "fake food". Fake foods to me, are foods that pretend to be something they are not. Soy is not meat, although through manufacturing it can look like chicken nuggets or ground beef. There has always been the information available that soy blocks thyroid production. Which in turn leads to so many other health problems. I don't have enough space in this blog to discuss them all. Even people without thyroid problems shouldn't be eating soy. So for a hashimoto's patient to eat soy, it would be extremely detrimental. Below is a website that has more information.
http://www.optimumchoices.com/Soy.htm

Now, I know you can always find something on the internet to say exactly what you want it to say. I'm sure if you looked hard enough, you'd find a website proving pigs can fly. So if you have doubts, even if you've read all there is to read on the internet about these foods, perhaps those doubts should hold some weight in your decision to consume soy and iodine. Perhaps you should not throw caution to the wind about them. Perhaps taking the chance it won't hurt you, will actually hurt you. And why would you take that chance?

Sunday, February 12, 2012

Today

How do I feel today... I guess I'm ok. I hurt all over, but it's not too bad. I'll take a couple of Advil today. I don't like to take medications, but I'm fine with 2 Advil now and then. Drinking lots of water with it.
On days like today, I wonder what my immune system will decide is 'bad' next. After it wipes out my thyroid completely, will it move on to something else? Is someone researching that? I don't know a single person who donates to thyroid research. Canadians can just go to this website - http://www.thyroid.ca/membership.php
It doesn't even take long. I paid for my 1 year membership. Best $25 I ever spent. I am hoping they take my annual membership and they find a way to cure this disease. That website has lots of information. Check it out.
Although I can't vouch for it's complete accuracy because not all Hashimoto's patients get a goitre, and not all goitres will reduce simply by taking a pill every day. They (goitres) are usually removed surgically.
But anyways, I'd like to go to the gym today. Just for a walk. Even though it's upstairs and is open to the lower floor, so it makes me lose my balance at a couple of places on the track. And sure, I could use my own treadmill, but sometimes I just want different scenery. It's nice to get out of the house too.


React and Overreact

Treating Hashimoto's disease is very difficult because it's like a dog chasing his tail. It's a never-ending chase. TSH goes down, doctor lowers the dose of thyroid medication (aka T4/Synthroid/Levothyroxine), TSH goes up, doctor raises the meds. It seems like the doctors are always reacting to what's already done. I'll put a timeline down based on what I go through.
Day 1 - I go in at 7:30am for them to take a sample of my blood.
Day 7 - I go in to see the doctor and the doctor decides my fate.
Day 49 - The new dose is in full effect.

Here is what doesn't make sense to me. There's 7 days between taking my blood and the day the doctor reads my results. I have Hashimoto's disease, which by definition means my labs will change as often as they like. Sometimes my thyroid works, sometimes it doesn't. It all depends on what it feels like that day. So maybe the day I had blood drawn, my thyroid felt like getting out of bed. Then the very next day it decided it was going back into hibernation. So the day I see the doctor for my result, my thyroid is still in hibernation, has been all week, but the doctor looks at my test results and says "I'm going to lower your T4 dose."
Now, if I'm having a bad day, I don't get my blood tested. I can't. A bad day usually means I can't even find the energy to get dressed or I'm in so much pain that getting dressed is just not an option. I always get my blood tested on the days that I feel better, which means they are the days my thyroid has decided to perk up and do something. Hmm... That kind of bites because my tests will always show I'm doing better than I really am. So the doctor will lower my T4's. It takes the new dose 6 weeks to be in full effect. 6 weeks. No testing during that time. The doctor doesn't even want to hear from me those weeks. Since the new dose is less than the previous dose, it makes my bad days worse and more frequent. And it all started because I felt well enough to get my blood taken for testing.
Is there a solution?
How about I drag my butt in there when I don't feel well? Drive when I can't wake up and take the chance I won't get in a car accident? Take the chance my confusion won't end up causing me to drive into the side of a building or a tree? Because bad days include confusion so bad that I can't even answer my phone, pain so extreme walking makes me cry, exhaustion so overpowering that I fall asleep when I don't want to.
What if the doctors tested more often? Perhaps labs are that busy? Perhaps doctors aren't all that busy and they can read my results the same day the lab completes it? Sure. Because I'm the only patient they have.
So what's the solution then?


Saturday, February 04, 2012

I Guess We're At Today


I saw my new doctor. He seemed so nice. Social. Polite. He even seemed to know what I was talking about with my disease. And the best part was, he gave me back my original dose of T4 replacement. He took the time to sit and read my medical records. I didn't mind waiting at all. It was comforting knowing he actually read what my endocrinologist wrote. It was nice to see he trusted the specialist I spent 4 years working with.

Such a huge load off my shoulders. After more than 6 months of riding the emotional roller coaster of 'will I get my medication', it feels almost like I've been released from a jail. Set free. At least until the next time. The next set of blood tests. Will they have a hyper test result? Is he going to overreact and lower my medication dosage again? Will he just know to leave things the same and test again in a few weeks? What do I do if he takes away my T4's like the other doctor?

Questions like that are part of life now.  

Friday, February 03, 2012

All Done, Right?

     I'm always surprised that people assume that taking medication is the end. I guess it is for many things. If you get a headache, you take an Advil and that's it. There's nothing more to discuss. Just take your meds and everything is perfect again. Magic. I wish that was the case with Hashimoto's disease because I like to plan things. What I'm doing tomorrow, how long I'm going to be on the treadmill, what I'm cooking for supper, if I'm going to play darts, etc. I like planning things. It helps me feel like I'm in control of something. Even though I take my medication, there's no magic release from this disease. I don't get to keep control. Hashimotos disease takes that control away. Simple tasks such as going to the grocery store can suddenly become a panic attack. Now, I don't usually get panic attacks, but I do get severe anxiety. Where I feel that I can't drive. I'm not sure what I'm afraid of, but it's something, and it stops me from leaving the house some days. And it's so easy to just let it. Let it take over. Some days I don't have the fight in me to stop it from taking over. So I stay home. I let it prevent me from going anywhere. I don't go to darts, I don't go to get groceries, I don't go pick up my prescriptions. Some days it hits me so hard that I don't even get on my treadmill. And I love my treadmill. So, everything gets put off a day. Or two. Today is one of those days. I need to pick up my prescription. Actually force myself to phone it in first. But knowing I have to drive there to get it - I can feel the anxiety build. It's not logical though. I've driven there many times. It's an easy drive. It's not even a difficult parking lot. Yet this anxiety is there and I have to push it away. I hope I can push it away enough to get me out of the house.


Continued Search

     After such a fiasco with the clinic doctor, I was so discouraged. I stopped my search for about a week or so. I had to take the lowered dose that I was given. What choice did I have? I did have some of my regular dose saved up, but those wouldn't last very long, and if there was no way for me to get that dose again, I had to find a way to live with the lowered dose. So I took the lowered dose and every day it seemed like I was just watching my life disappear. Slowly, as I adapted to the lowered dose, I was awake less and less, my body started to hurt literally from head to toe. My hair hurt, broke off, fell out. But the pain quickly became excruciating. Just lifting my arm would make me scream out in pain and cry. One day I couldn't bear it any longer. I called my husband and asked him to take me to the hospital ER. I felt hope that the doctor there would do my blood tests and give me back my regular thyroid dose. In the meantime they hooked me up to an IV with pain medication in it. Morphine maybe? I don't remember. My blood tests came back, and in 10 days of lowering my meds, my TSH went up almost 2 whole points. Still, the doctor decided to give me 500mg oxycodone plus an anti-inflammatory, rather than adding 12.5mcg of my thyroid medication. Why is that? I'm trying to find logic in this. Give a highly addictive narcotic with side effects of depression, possibility of suicide, to someone with Hashimoto's disease including a high incidence of depression, INSTEAD of adding a very small dose of thyroid medication they were already on and IN WRITING by a specialist who had treated the patient for 4 years. How can that be? He actually gave me enough medication to kill myself. He's lucky I didn't do it because I admit it crossed my mind. At certain parts of the day that was all I ever thought about. Being in excruciating pain with absolutely no end in sight, option is being stoned AND in pain? No contest.

Turns out I didn't take the oxycodone. I couldn't make myself to do it. I did, however, take the anti-inflammatory. Which worked well enough for me to be able to get out of bed. Still in pain though. But this wasn't a solution. I had to find a doctor.

So I started phoning around again. Only this time I phone hospitals. And I begged. I told whoever answered the phone about my Hashimoto's disease and asked if they knew anyone who would take me - just me. After about an hour on the phone, the sun came out. One nurse said she knew a doctor who was going to be taking new patients in the next month or two, and she gave me his number. I thanked her profusely and then made the call. All of a sudden I was on the waiting list and they would call me with an appointment! Relief! I could finally start taking my little stash of my regular dose! I counted the pills, and found I had enough to get me to my appointment with my new doctor. All that was left was the waiting. Waiting to see if he would do the same as the one in the clinic. Waiting. Waiting. Waiting.

Tuesday, January 24, 2012

Find A Doctor in Canada

I never expected this task to be so time-consuming. I mean, this is Canada. We have tons of doctors. How could it possibly be difficult to find a doctor?
Well... I feel like this is the beginning of a fairy tale. A long, long time ago, in a land far, far, away...

When I was in Winnipeg, I found out the doctors switched from doctor offices to clinics. I'm sure the change helps more people and is less of a burden for the doctors. So when I moved here to Nova Scotia, I wasn't surprised to see there's a clinic as well as a few doctors offices.

The doctors offices were no longer taking new patients. OK. So I went to the clinic. I needed my prescriptions refilled. I thought it would be simple. I would bring in the bottles, and they would refill them. No such luck. The doctor only phoned in PART of my prescriptions because she wanted to see my blood tests. After reading the thyroid chat website, and knowing what others have gone through, I have to admit that I was scared. Still a little hopeful, but scared.

So blood tests done, I went in to see her and ask for the rest of my thyroid dose back. She turns to me and says she's never heard of Hashimoto's disease. (OMG!! Are you freekin kidding me?!?!?) My heart dropped to the floor. I could feel the panic rising. What was I going to do? What kind of doctor hasn't heard of Hashimoto's disease? I was in shock. I tried to calmly explain that Hashimoto's is indicative to periods of hyperthyroid TSH results as well as hypothyroid TSH results. She refused to even talk to me. All she said was I can have the tests redone in 4 months - absolutely no sooner than that - and would I like a flu shot. Sure. Hell, why not. And then she sent me on my way.


It's Been a Bit

I planned to post sooner, but I'm content in where I'm at right now. This day. Today. No, it's not perfect, but I'm content with the mild symptoms. These mild symptom days are so hard to get to and sometimes are gone before I notice I have them. It's sort of like having the hiccups. You notice when you have them, but don't notice when they leave. Suddenly they are gone and you have no idea how long ago they stopped. But you definitely notice when they start up again. So right now I'm enjoying the calm. The lack of symptoms. They aren't gone, of course, but they're much less than normal. It's a beautiful day.

So here's my dilemma. I feel pretty good, so do I catch up on all the things that need to be done? There's piles of laundry, the floors need to be washed, the house needs a good cleaning, and the pups need to be brushed and trimmed. Do I do all that and take the chance, hope beyond hope, that I'll be able to get out of bed tomorrow? I've also signed up for the Relay for Life in Blenheim on June 1st. I want to walk the full 12 hours - with standard breaks of course. (I'm not sure I know anyone who can go 12 hours without a washroom break.) But that walk-a-thon means training now. Today's training is only a 5km walk. So do I do all that and take the chance that for the next 7 to 14 days I may be stuck in bed? What if I relax today and I'm still stuck in bed for the next 10 days? Because there's a very good chance that may happen also. Hashimoto's has no boundaries. It takes what it wants.

Deep breath... How do I decide...

Thursday, January 12, 2012

Moving Back to Canada

Moving again. I made the decision it will be my last move. Meadowvale, Nova Scotia. A village so small they don't even bother putting it on the map. Between the move itself, because I was "out of country", Alaska having surgery for a cancerous lump, and building this house, my stress levels went way up. I've heard someone say that the two most stressful things we do in life are: building a home, and having a wedding/getting married. Very true. I found out just how much stress aggravates my Hashimoto's. I had so many sleepless nights. I think I was beginning to worry over every little thing. So I ended up going to the doctor to get something for my anxiety.
Have you read the side effects of an anti-anxiety medication?? Not good. Nope. But I had to have them. I was able to convince the doctor that I didn't need them every day, and a low dose would work just fine. *sigh* of relief.
So now it's time to find a doctor in Canada. I think they saw me coming and ran.

More Meds, Less Meds

Having Hashimoto's means getting my blood tested every 6-8 weeks until the right amount of thyroid replacement medication is taken. Now, keep in mind that Hashimotos disease is indicative to periods of hyper, hypo, and euthroid. So, if my blood test today shows I'm hyper, retesting next week may show I'm hypo. The problems come when I get a TSH value of 0.02 - hyper - then the doctor lowers my medication. Not fun. Less thyroid replacement means more symptoms. More exhaustion, more anxiety, more confusion, more depression. But still the doctors do it. Then, after 6 weeks in hell, my blood is tested again. My results are usually 2.2, maybe 3.2, which is hypo. That would mean I need an increase in my thyroid medication. NOW, if the doctors would just leave the dose alone, I think they would find that it all balances out. Adjusting to each dose takes a few weeks and the constant dosage change just becomes insufferable. More thyroid medication, less thyroid medication. The thyroid 'talks' to everything in the body. So the fluctuations in the thyroid medications has an enormous impact on the body as a whole.  This week the hormones are almost fine, next week the hormones are all on vacation, the following week they're at an all time high. If any man thought PMS was bad, they should see what it's like to add PMS to the constantly changing thyroid levels/pituitary functions/hormone levels/adrenal levels/serotonin levels/human hormone growth levels, etc. It's like a roller coaster inside the body.
And with all the changes, that thing is bound to jump the track one day.
So what I did, and I never, never, never recommend anyone do this - I started to regulate my own medication. I had so many different doses that I was able to pick and choose what I was going to take. I chose a mid-range dose out of what I had and started there. I didn't want to be taking more than I needed. My goal was to find one dose and only one dose that allowed me to feel ok while keeping me within what the doctors considered a good range. It wasn't easy and I don't suggest anyone ever do it. And anyone reading this - don't do what I did. I was lucky. I was taking my Medical Assistant degree and I had access to a great deal of information. I also never withheld the information from my doctor. EVER. I always told him what I was taking, how I felt, etc. So I was still under doctor supervision. I even phoned him when I had a question. We discussed at length the effects of too much thyroid replacement medication, different vitamins, different ways of eating, how much exercise to get and when. I'm certain he had to book me extra time for my office visits because he knew I wasn't going to just sit there and accept anything he said. I insisted he prove things to me. I made him tell me why he thought the way he did. And if there was something I was unsure of, I researched it with an open mind.
So after all that, at the end of 2010 I finally knew what dose I needed to be on.

Tuesday, January 10, 2012

OK, So I'm Diagnosed

So I have Hashimoto's Disease. Now what? Will there be different treatments? Will the doctor understand better? Will he be able to help me now? We know what's wrong, so can it be fixed? 
I kept reading article after article on Hashimoto's Disease, but I couldn't find anything. How can we (all people - the human race) have a disease that's just ignored? Why would that happen? How could that happen? 
So now I start to get angry. Why isn't anyone looking for more information? Why aren't they doing something about this disease? They have a test for it, so how do doctors just walk away from a patient after telling them they have this disease? The doctors can't offer hope. They can't offer treatments. Just a 'band aid' to get us through life. And this is not a good life. This is not what you could call "quality" life. Being in pain every single moment of being alive is not "quality" living. Having that pain dismissed by doctors because the doctor doesn't know what to do - that is not "quality" living. Do you think I'm angry? You're damn right I'm angry. How dare they do that to me?!? To all of us who have this disease?!? How dare they just pass us over as though we are not important!! How dare they dismiss our symptoms just because they don't know the answers!!
 
I know this disease doesn't show on my face. I know I don't usually look like I'm in pain. I know I try not to let anyone see when I'm having an 'episode'. That doesn't mean it's not there. And that doesn't mean I suffer any less.  

Saturday, January 07, 2012

Internet Search

It didn't actually take me very long to find a chat site online about thyroid diseases. I was lucky. The first one I joined had the best people. They shared their stories, their knowledge, their fears, hopes and dreams. It breaks my heart that site is no longer available today. It was their knowledge that I trusted and counted on. They explained how I should have the anti-TPO blood test to see if I had Hashimoto's disease. How anyone who is diagnosed hypothyroid should have that simple blood test done. (It's also called a TPO Ab test.) They also suggested a FNA (fine-needle aspiration). So I went to my regular doctor and asked for that blood test specifically. The doctor didn't object. I told him I just wanted to be sure I had hypothyroidism rather than Hashimoto's disease. The test took 4 days. During that time I just went on about my days as though I was sure of the results.
The day I was told I had Hashimoto's disease, I was in shock. I told the ladies on the chat site and they offered lots of support, but it didn't really sink in. Not at first. I'm not even sure when it hit me. I was in the middle of adapting to a new dose of thyroid meds and I still felt terrible. My symptoms were jumping up and down. Severe for a few days, then not too bad for a day or two. I was taking online classes and my energy was needed to get good grades. One night I was working on my Corporate Finance project when I just fell apart. I stopped what I was doing, dropped my pencil and just started to cry. I felt like someone had just given me a death sentence. In my mind, that's exactly what they did.

Pause 3

For those who don't know, Hashimoto's is a disease. It is not hypothyroidism. It is not curable. I named my blog Hashimoto's Unlimited because there is no limit to what this disease takes. It never goes away. Hypothyroidism is a condition that has a treatment. I have Hashimoto's disease. Every day I have to deal with symptoms. Some days are better than others. Some days I only have a little bit of pain. Some days I carry around my pain medication. Every day I live with the knowledge that people just aren't that interested in researching or looking for a cure. Hell, they're not even interested in looking for an actual treatment.
So you know what I do every day? I just go on. I can't complain to anyone because no one understands. I can't stay in bed and cry because it won't make things better. I can't post to Facebook about it every day because people just don't want to read about it. And they certainly don't want to read about it every single day. So imagine what it's like to live with - every. single. day. So I go on. We all do. Every person with this disease just suffers in silence. There's no other option. If we go to the doctor to complain, we get labeled as a hypochondriac. If we complain to friends, we lose our friends. So we all just go on.

Living in the U.S.A.

In 2007 we moved to Oklahoma City. The Air Force posted us once again, and I was very grateful to go. It wasn't as much of a change as I thought it would be. Living in Oklahoma City is pretty much like living in any other city. But so much happened in the 4 years we were there. Yes, the weather was much nicer there, very consistently warm and sunny, and the tornadoes were exciting every spring. But I was still having so many symptoms. I thought they would just go away once I was on thyroid medication. I was taking the meds just like my doctor in Winnipeg told me to. So why did I feel like a bag of poop every day? Why was I in pain? Why was I getting these 'episodes' of confusion, forgetfulness, dizziness? And mostly - WHY DIDN'T ANYONE CARE?

I felt so amazingly alone. No one in my family knew anything about hypothyroidism. People seemed to think it was no big deal. 'Take your pill and you'll be all better'. When??? Why was everyone so aloof about it? If I feel like this, why is it just 'nothing' to everyone? Is it me? How do I feel so horrible, while everyone else looks at me like I'm exaggerating or pretending? I know it's real, so why can't anyone see it?

I must admit I really liked the medical care I received in Oklahoma. Although it wasn't a complete breeze, it wasn't that bad either. I walked into a doctor's office around the corner to see the doctor. I made an appointment for the following week. That was simple. My first visit with him was great. He said he understood completely what I was going through, he increased my medication dosage, and then he referred me to an endocrinologist.

STILL, it just kept nagging me. If I'm doing what the doctors tell me to, how on earth do I feel so horrible? So I started searching the internet and I found a chat site for people with thyroid issues.

Wednesday, January 04, 2012

Winterpeg...I mean, Winnipeg

Amazing!! Winter in Winnipeg is, hands down, the worst winter experience of my life. It's so cold that 'cold' goes there to warm up. But the good thing about Winnipeg is the doctor I found there. He was great!! He was just like my doctor in British Columbia. He understood that I wouldn't come to see him for a cold or the flu. There had to be something serious before I would go in to see him. Well, I saw him for almost 3 years before I finally worked up the courage to ask him about my symptoms. And he listened. Right then he said 'sounds like your thyroid'. OMG!!  An answer?!?! I was flabbergasted!! He sent me for blood tests and the following week he told me - "Nancy, your TSH is 9.2, which means you are hypothyroid." Of course I had no idea what he was talking about. Hypothyroidism? What's that? And what's the treatment? He explained the best he could what being 'hypo' meant, and he said I had 2 options. One was medication, two was medication and surgery.
Well, little did I know, but I chose the wrong one. I chose not to have surgery. Every day I think about that decision. Every time I get my blood tests done, I think about that decision. Every time I get an adjustment in my medication, I think about that decision. Every single day, I think about that decision.

From Vancouver Island to Winnipeg

I enjoyed living on Vancouver Island. It is such a great place to live.  Especially if you like eating healthy and being active. We BBQ'd almost every day. Bought fresh produce from the farmers' markets. We went hiking (turns out I'm not a big fan of hiking), swimming, bicycling, socializing, etc. I had 37 rose bushes around the house that I insisted on checking, cutting, and weeding regularly, along with several other plants and trees. I also put dog fur on the rose bushes after each rain to keep the deer away. I played darts in 2 separate leagues and I worked for a Real Estate Appraisal company. (Fascinating work.) I did my best to follow my doctor's suggestions.  Unfortunately, it didn't seem like they were working, and that Christmas we found out the Air Force was posting us to Winnipeg in June 2003.    

First Doctor Visit

Sure, I was going to see a doctor. Since I still wasn't sure how to explain what I was dealing with, explaining things was extremely difficult.  I started telling my doctor how tired I was.  How I was gaining weight just looking at someone else eating.  How I forgot things so easily. How I felt moody. And how emotionally drained I felt for no reason at all.  Of course, you know all these things are easily explained.  I was 30 years old.  I guess the body just deteriorates at 30?  I guess when we hit 30 we are now "getting older" and perhaps we "just can't do things like we use to be able to".  Yikes!!  I was thinking - if this is 30, what is going to happen at 40?? Or 50???  How do people live past 90??  Perhaps Alzheimer's is just the natural progression of the brain?  Because I felt like it was already starting to hit me.

Now, there's no way I'm going to blame my doctor for not catching Hashimoto's Disease. He's a great doctor. He understood how I didn't want medication if there was a way around it.  Jogging to get rid of a cold, a regular decongestant for the ringing in my ears, the extreme minimum of asthma medication to control my asthma symptoms, etc.  There's one thing neither of us knew.  Thyroid disease runs in the family.  Why would he look for something that even I didn't know might be there?

Instead, I just took his suggestions to try and sleep better at night, remove all processed foods from my diet, and try to get a little more exercise.  And most of all, he said 'don't sweat the small stuff'.  *sigh*