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Thyroid Roller Coaster
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IGJohnson posted:
Hello everyone! I'm a 27 year old female struggling with hypothyroidism, being overweight, and infertility. Since being diagnosed a year and a half ago, my TSH has been like a roller coaster. In the last year I have gone from 8 to 5.4 to 11 to 3.5 to 10 to 0.1 to 15.5--in that order! Each time my doctor has changed my dose of Armour accordingly. Before being on Armour I was taking Levothyroxine and basically the same thing happened but I don't remember my numbers (one of my symptoms is a foggy memory). I thought we were on the right track when it was 0.1 and that if we just brought my dose down a little bit then I would be exactly where I needed to be, but in just 3 months time it shot up to 15.5!! My doctor said that she wants to see me in another 3 months but I'm really discouraged and frustrated. Why is it doing this? I have not been diagnosed with the autoimmune thyroid but could that by why it is fluctuating so much? I don't think I have a swollen thyroid or goiter, which I have read is one of the main signs of it. My cousin has hypo as well and was actually hospitalized for exhaustion and dizziness when her TSH reached around 15. I don't think anyone else in our family has ever been diagnosed with it but I do know that our grandmother only had 2 children and tried for years to have more but never did, so I guess it's possible that she had it and was not diagnosed. Anyway, all that to say that I am wondering if it's possible that I have an autoimmune disorder and if so, what can be done? My TSH fluctuates so much that I feel it's causing a toll on my body. I'm stuck in a vicious cycle. I have been trying to get pregnant now for 2 years after having a devastating miscarriage but I know that won't happen until my thyroid is under control. I want to lose weight but I am too exhausted to get out and exercise more. Making healthy meals also requires energy, which I just don't have. I have a strong desire to get healthy but my body is doing everything it can to work against me. I have to force myself to get out of bed in the morning.

Thank you.
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DOGDANCING_TCOS responded:
Make sure your doc is checking B-12 level and vitamin D levels too. Have you been to an endocrinologist?
 
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IGJohnson replied to DOGDANCING_TCOS's response:
Thank you so much for your reply.
Well, I have very limited funds for that right now. I'm a stay at home mom (we have a 3 year old) and my husband's job does not provide insurance so we have private insurance, which is 3 times more expensive. It does not cover lab work, prescriptions, or anything that is even hinted at being a pre-existing condition. Basically it's only useful if I end up in the hospital. We are doing okay financially and can afford the 3-month doctor checkups and TSH lab work but more than that would really put us under. My husband has had three interviews with a new company that would provide insurance (and almost double his income) so we're hopeful but unless he gets the job, I'm just kind of stuck.

What would my B-12 and Vitamin D levels indicate? Are there any questions that I should be asking my doctor? Is there anything I can be doing at home? As difficult as it is with my current energy levels and muscle stiffness, would losing weight help balance out my hormone levels?
 
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IGJohnson replied to DOGDANCING_TCOS's response:
Thank you so much for responding.

Well, my funds currently do not allow for much more lab work and a specialist. I am a stay at home mom (we have a 3 year old) and my husband's job does not provide group insurance. So we pay 3 times more for private insurance that basically only covers you if you end up in the hospital. No lab work, prescriptions, specialists, or anything that even hints at possibly being a pre-existing condition. We can manage my 3 month check ups and TSH lab work and have a little extra saved up for if any of us get sick, but more than that would really put us under. We're hoping that will change soon with a new job for my husband that would provide insurance and almost double the income but unless that pans out, I'm just kind of stuck.

What would the B-12 and Vitamin D levels indicate? Are there any questions I should be asking my doctor? Is there anything I can do at home? As difficult as it is, would losing weight help to balance out my hormone levels? If it really is the autoimmune disorder, do I need to be treating it any differently than if I just had a run-of-the-mill under-active thyroid?

Thank you for any insight and advice.
 
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DOGDANCING_TCOS replied to IGJohnson's response:
I hear you... I do work and still me and my kids have no health insurance, hubbys is 700 to add us to his works insurance.

low B-12 could account for the energy levels being off.

Vitamin D issues are common among thyroid issue people.

You might try magnesium for the muscle stiffness...did wonders for my legs.

Doing at home: reduce the amount of iodine you are taking in. Iodine is processed in the thyroid and every time you load large amounts your thyroid must deal with it. Don't add to its work load, watch the iodine intake.

Rest when your energy levels are at there lowest...you cannot power though those spells. Curl up with your kiddo and read a book.
 
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DOGDANCING_TCOS replied to DOGDANCING_TCOS's response:
oh and...

You: if it's possible that I have an autoimmune disorder and if so, what can be done?


you most likely do have one, the doc just hasn't told you. Thyroid disorders are not curable. The treatment is to deal with the symptoms.


Next time your in with the doctor as him: Do I have Hashimoto's thyroiditis?


You can feel better. You can. Keep trying, it took 4 years for them to discover my fatigue/exhaustion was low b-12.
 
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SK212 responded:
Hi,
Ive read your concerns and Ive had nearly the same issue, been looking online for a support group until I found webmd and you're post. Ive been hypothyroid for 6 years taking liothyronine and eltroxin. I miscarried last year and this is when everything went crazy, we've been trying to conceive from march to august with no luck, and with some symtoms of palpitations, sweating and shortness of great, so i decided to check my thyroid again and found that my TSH was undetected, my Dr. asked me to stop taking liothyronine and to continue with 100 mcg of eltroxin for 6 weeks and to test again, I found that my TSH went up just a little bit so the dr. told me to do it again in another 6 weeks (which is in a week) so fingers crossed it comes up a little again.
my advice to you is, stay on one dose for a long period of time so you're body adjusts to the hormones ragging.

my problem is my depression, im newly married and i feel bad for my husband who has to tolerate my roller coaster emotions
 
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IGJohnson replied to SK212's response:
Oh goodness, SK212, I completely feel your pain. I had no idea that there was anything wrong with me until I had a miscarriage 2 years ago and spent 9 months trying to conceive after that. My cycle went from 40 days to 3 months then I started having a bunch of little periods every 15-20 days. It was strange so I finally went in to get tested. I have been trying to conceive ever since. So I understand the frustration of trying to get pregnant. I have decided that I just have to be content with my 1 little miracle child so that if I ever do pregnant again I can be genuinely surprised. I am sorry for your troubles and I hope that you get good news next week when you go back to your doctor.

I stay on 1 dose for 2-3 months. I always end up needing to go in to get tested because I can tell that my TSH has either gone up or down and that's when my doctor changes my dose. Since I am still newly diagnosed she said that we're still just trying to find the right dose. However, it seems that my thyroid goes through periods of functioning and periods of not functioning. I'm not really sure what to make of that and I don't know how it can ever be under control if it is constantly going up and down like that.

I love being able to talk to other people about this online because nobody else in my family really understands what I'm going through. They think, "Oh, it's just another thyroid thing." They don't understand just how exhausted I am. It's a miracle that I can even get out of bed some days. They think, "So what? I'm tired and I can still do my doings," but they don't know what real exhaustion is until they've felt it every day for 2 years and it's combined with muscle weakness, foggy thinking, uncontrollable shivering when it's barely even cold, trying in vain to conceive for 2 years, depression, and the complete inability to lose weight no matter how hard you try. So knowing that there ARE people who understand helps me to feel just a little better.


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