Hey all, I'm new here. I've had some weird blood test results, and my endo doctor says he no longer knows what to do.
Would love some help or information that anyone can give me.
Thyroid problems run in my family, i was first diagnosed during pregnancy and put on a low dose of PTU. The hyperthyroidism went away and didn't come back until about 8 months post partum.
8 months post-partum, Dec 2015 - FT3 and FT4 were very high (FT3 non-measurable at over 30.8 pmol/L, normal range 3.5-6.5. FT4 was 73, normal range 10.3-19.7), and my TSH virtually non-existent (less than 0.03).
I was put on 5mg methimazole (low dose bc i was nursing) and 40 mg prolol a day. I gradually weaned off prolol as my heart rate stabilized and methimazole kicked in. FT3 and FT4 were still out of range so the doc upped the methimazole dose to 15 mg a day, and after additional testing to 40mg a day.
FT3 went down to normal range, FT4 was suddenly HYPO dropping from 63.5 to 6.5 (normal range 10.3-19.7) in 2.5 weeks. Whereas FT3 went down from over 30.8 (unmeasurable) to 4.6 (normal range 3.5-6.5). TSH still less than 0.03.
When we slightly reduced methimazole dose to fix sudden hypo tendency, FT3 went right back up to out of range: 7.37, and FT4 remained hypo and even got worse: 8.2. How can i be hyper and hypo at the same time? And both of them getting worse despite the meds?
Doc added naproxen to the mix to treat the hypo which he thinks is inflammation, and to help swelling and pain in goiter.
Just got the newest blood test results back and they read: TSH still less than 0.03
(is this not strange?!) FT3 higher up at 9.3 (normal range 3.5-6.5). FT4 no longer hypo, in normal range at 13.5 (normal range 10.3-19.7).
Doc wants me to continue methimazole and naproxen although he thinks the naproxen is useless.
I am starting to get really worried because the doctor says i am an unusual case and that i'm not reacting like people usually do, and that he doesn't know what to do next. (what kind of doctor says this to their patient? im really starting to freak out)
Possibly I have underlying Grave's disease, as well as postpartum thyroiditis at the same time. Postpartum thyroiditis apparently causes hyper, then hypo and then evens out in the year following birth. So right now I am hyper and hypo, together, but TSH still non-existent. Is it possible to have both conditions at the same time?
In terms of symptoms, it's been a rollercoaster of anxiety and/or depression, immense fatigue, shakiness, weight loss, weight gain, and more.
Feeling a bit like a guinea pig here, especially when doc is experimenting and says he doesn't really know what is happening.
I would love to hear of similar experiences that may shed some light, as well as anything underlying or other tests that you think may help.
Thanks a lot in advance!!
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tamzd1andonly
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You are hyper because FT3 is over range and TSH is suppressed. TSH may take months or years to recover and sometimes never does. Methimazole dose should be titrated until FT3 is within range. It's more important to have FT3 within range than FT4. If FT4 drops below range in order to bring FT3 into range you haven't become hypo.
Your doctor's not using you as a guinea pig. Finding the right dose is suck it and see and it takes time to stabilise levels. You may need blood tests and dose tweaks every 3-4 weeks until FT3 is stable. If FT4 and FT3 go too low in range you will become hypo and will need dose reduced.
Most doctors are too arrogant to admit they don't know something, and although his honesty is refreshing, I don't imagine it fills you with confidence. In the UK hyperthyroid patients are referred to endocrinology for monitoring as specialist knowledge is deemed necessary.
I would ask your doctor to test Thyroid Stimulating Immunoglobin or Thyroid Receptor antibodies to confirm or rule out autoimmune Graves Disease. Many hyperthyroid patients can be weaned off Methimazole 12-18 months after stabilising and will enjoy remission. If Graves Disease is confirmed the chances of permanent remission are less than 50%.
Hyperthyroid patients burn up nutrients, vitamins and minerals quicker than they can be replaced so ask for ferritin, vitamin D, B12 and folate to be tested.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thanks for your swift reply and useful information! You've helped me feel less worried.
A few questions:
1. Is there a difference between "autoimmune Graves disease" and regular graves disease or hyperthyroid? I'm asking because my endo doctor has already written me up as Grave's disease, but we never did the tests you suggested. He seems to think I have Graves because the hyperthyroid was triggered by hormonal changes, or something like that. I hope he will let me get these additional blood tests.
2. Can lack of ferritin, vitamin D, B12 and/or follate make my condition worse? Will taking supplements help the symptoms, or the root of the problem directly?
3. Do you know anything about the Postpartum thyroiditis that my endo mentioned?
4. Re seeing a specialist, do you think i should get a second opinion in addition to my endocrinologist? He is, technically, a specialist. But I'm not feeling too confident at the mo.
5. Do you know anything about stress-relief and how it can help thyroid issues?
1. Graves Disease is an autoimmune disease which causes hyperthyroidism. Not all hyperthyroidism is autoimmune. The tests will determine whether your hyperthyroidism is autoimmune.
2. Correcting vitamin/mineral deficiencies will improve symptoms you have due to deficiencies but won't 'cure' hyperthyroidism.
4. Whatever specialist you see will have to titrate Methimazole until a dose which stabilises you is found initially and then as your thyroid is regulated dose will need reduction to avoid you being hypothyroid.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
That's very interesting... Indeed most of my family members had hypo, or just very swollen/lumpy goitres that needed to be taken out (i'm unsure of what underlying thyroid condition caused this in each relative).
Honestly, I'd rather be hyper than hypo any day.
I'm pretty sure there is some chronic fatigue and depression among family members. But again, I don't have access to all the details...
The only symptom I can track accurately in terms of numbers is weight, which goes down mostly, but did go up when FT4 was down.
Other than that, the rest of my symptoms seem constantly hyper: shaking hands, anxiety, always hot, thirsty, mostly feel like the duracell bunny.
Not sure about mood swings or fatigue as they could mean either way...
I will check out the info you sent, thanks!
And will get endo to test my antibodies, although when i asked him today he said, "It's not going to change anything". But it changes a lot about how i feelgoing through this
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