I have been on this forum before to try to get help for what was going on with my thyroid whilst I was taking thyroxine. I am no longer taking thyroxine after feeling awful on it (even with good lab results) for nearly 6 years.
I can’t post all results, but briefly, this issue timeline of what my thyroid did:
1st successful pregnancy - I suspect started thyroid issues which went undetected, lost weight after birth, no tests done
2nd successful pregnancy - Lost a lot of weight after birth and diagnosed with hyperthyroidism, started on carbimazole (TSH was 0.04)
After 1 month of carbimazole - swung to hypothyroid and put on thyroxine (TSH was 90) Also, anti bodies showed Hashimoto’s.
Felt awful for 5 years, put on loads of weight as well, loads of symptoms, which did not correlate with thyroid results which appeared fine.
Had 2 late miscarriages (rare) over 2 years on thyroxine. During pregnancies, TSH always lowered (opposite of what it’s supposed to do apparently)
Took myself off thyroxine - after a period of around 3 months off, TSH is within normal range.
Got pregnant again - ended in another late miscarriage (becoming very rare now) in June 2020
No explanation for miscarriages despite loads of tests.
TSH now still off thyroxine testing at 0.188 (lowest lab range was 0.27, so slightly low)
Can anyone help me piece together what is going on please?
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Do they test anything other than TSH? Do you have results for FT4 and FT3? I suspect you’ve been left on doses of levothyroxine that got your TSH into range but weren’t actually enough to keep your levels of thyroid hormones optimal in your blood stream.
I suppose it is possible the miscarriages have nothing to do with thyroid hormone levels in your case but I don’t think you’d have posted if you didn’t suspect it could be the problem.
This excerpt below is from another website and it is self-explanatory:-
I was diagnosed with hypothyroidism the year following the birth of my first son Benjamin in 2006. Low thyroid symptoms overtook my life. I was overwhelmed with fatigue. The pregnancy weight was impossible to lose. My hair was falling out. The heels of my feet were cracked and my scalp itched. My legs were numb to the touch. Unusually heavy menstrual bleeding, chronic constipation, and constant infections plagued me. Kidney stones landed me in the emergency room. A healthy woman prior to pregnancy now I had blood levels indicating I was at high risk for a heart attack and pre-diabetic. What had happened to me?
“Doctor knows best” or that is what I thought. I followed their thyroid drug protocol to the letter never once thinking they might not know everything there was to know about hypothyroidism, especially when I became pregnant again in late 2008. I assumed that in New York City, one of the greatest cities in the world, they would have all the answers.
The 2007 Endocrine Society’s clinical guidelines for the Management of Thyroid Dysfunction during Pregnancy and Postpartum clearly included the following recommendations:
2nd successful pregnancy - Lost a lot of weight after birth and diagnosed with hyperthyroidism, started on carbimazole (TSH was 0.04)
After 1 month of carbimazole - swung to hypothyroid and put on thyroxine (TSH was 90) Also, anti bodies showed Hashimoto’s.
If the medical system had any sense and any compassion in relation to thyroid disease, no doctor would ever diagnose someone with a problem with only a TSH. They should always get Free T4 and Free T3 as well as TSH. And before diagnosing someone with hyperthyroidism they should check the appropriate thyroid antibodies.
There is no way that someone with true hyperthyroidism would go from a slightly below range TSH to a TSH of 90 after just one month's anti-thyroid drugs. Graves' Disease is simply not that responsive to ATD that I'm aware of. ( I might be wrong on that, but I don't think I've come across it on the forum.)
But if you had been misdiagnosed with hyperthyroidism on the basis of a slightly low TSH and were in fact suffering from transient thyroiditis, or Hashimoto's Disease then what happened to you could have been predicted.
You really need to get a full thyroid panel done, and that includes TSH, Free T4, Free T3, TPO Antibodies and Tg Antibodies.
Since low levels of nutrients are also very common in thyroid disease, improving those should improve some of your symptoms. So getting Ferritin (iron stores), Vitamin B12, folate and Vitamin D tested is well worth doing.
These are the most popular private tests that I know of that don't involve seeing a doctor, and can also be done with a finger-prick sample at home, then send the sample back to the lab through the post. Results are sent directly to you, not your doctor. You can then post results on the forum and ask for feedback.
It sounds as though you are perhaps currently, and when you were diagnosed hyper, having a hypo swing. I believe this happens in hashimotos when your thyroid cells are killed off and they basically dump thyroid hormone into your system.
I’m sure someone will be able to explain a bit more scientifically but I think it’s a pretty common experience with hashimotos to have periods of feeling normal or hyper while your thyroid is attacked. Ultimately, the result is the same though, and sooner or later there won’t be enough thyroid or dumped hormone left to support the body.
Deffo a good idea to get a full thyroid panel, including antibodies tests. Privately if the doctor won’t run then. This’ll give you a much clearer picture of what’s actually happening.
Hi it seems that progesterone may be playing a part in your health problems - after giving birth progesterone drops dramatically giving rise to estrogen dominance which can cause autoimmune disorders and ppp, pp hashimotos can go away after a while when the ovaries start to make more progesterone low progesterone can also play a part in miscarriages ? I don't think you can just supplement with progesterone though as some video on youtube says it can make things worse idk ? but it might help to understand your problems if you did some research on progesterone
Lara Bridan is a nutritionist who is very knowledgeable on hormones well worth checking her blog out
Thanks everyone, going to look into suggestions made and get updated tests.
As far as I know progesterone doesn't play a part in late miscarriages. My losses have been at 16, 18 and 20 weeks, which is why it's rarer. Most losses occur before 12 weeks and that's where progesterone plays a part I think. But I will take a look and check that.
OK, so I've not done the bloods again yet. But want to ask.
Is it possible that I have graves disease instead of hashis?
Seeing as when I was first diagnosed it was with a low tsh, and since stopping thyroxine I have gone back to a low tsh? So I never should have been on thyroxine and I felt awful on it because my body was having to fight against the thyroxine to keep levels stable?
I do have positive peroxidase antibodies 90 with range of under 30.
And that is why i got diagnosed with hashis, but I've just read that you can also have positive TPO in graves?
If you’ve been diagnosed with hashis and tested positive for antibodies, I would think it’s more likely that your TSH is low because of hypo swings. But there are of course a lot of other reasons why your TSH would be low and you can’t possibly know that without a full thyroid panel. You could tie yourself in knots with guess work!
Also worth a mention that graves is diagnosed with a positive test for TRAb, not TPO or TgAb.
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