Has anyone ever been diagnosed with central hypothyroidism? I think I could possibly have it based on my symptoms, lots of online research and full suite of thyroid tests that I've had carried out low fT4 of 9 (9-22) with normal (but lowish) TSH of 1.6. Between 2 tests my fT4 fell from 11 to 9 and my TSH also fell from 1.6 to 1.4 but I would have expected it to go up to try stimulating the thyroid to produce more thyroxine.
I've had all the thyroid tests (including antibodies and vitamin tests) but still don't have a treatment plan with either NHS GP or private endo consultant. What tests can I do to either confirm or rule out central hypothyroidism and what is the bets treatment plan for this (both medicinally and lifestyle e.g. diet/exercise over and above usual healthy diet advice).
If you are based in Scotland please also private message me if you have any recommendations for a specialist with experience of central hypothyroidism?
Thanks for taking the time to read my post. Any help/advice/tips/links on what I can do to get closer to finding out what's actaully wrong with me and what I can do to make it even marginally better would be so much appreciated. It's ruining my life 😞
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You need FT3, FT4 and TSH testing to determine what's going on. Do you take any supplements or medication as it could affect results? A number of factors can affect thyroid function. If the results indicate central hypothyroid and there are no other obvious factors affecting thyroid function then you'll need an experienced thyroid specialist referral to get ultrasound for pituitary gland and there may be other tests they do but it's outside of my experience.
Sorry, just edited as realised you've had vitamins tested, what were the results?
Central Hypo is when the problem lies with the pituitary (Secondary Hypo) or the hypothalamus (Tertiary Hypo) rather than the thyroid itself (Primary Hypo).
The pituitary produces TSH, and obviously, in your case, it isn't doing its job. But, the hypothalamus has to tell it to make TSH. So, either gland could be at fault.
There are no particular symptoms, just the symptoms of hypo thyroidism. Except that the pituitary doesn't just produce TSH. It produces a lot of other hormones, too, which can affect the adrenals and other things. Hormones such as ATCH, HGH, etc. So, some of these need testing to confirm or rule out a pituitary problem. Unfortunately, they don't test the hypothalamus.
Unfortunately, I don't think there are any life-style or dietary changes you can make that will help. Because Central Hypo isn't about life-style of diet. Not everything is.
I was diagnosed with a normal TSH of 1.7 and a FT4 of 12.8 (10-20) and FT3 of 3 (3.5-6,5). My TSH has never been above 3 and fluctuated between 1-2 most of the time before I started medication. I had the full pituitary bloods and all was OK and I also have no antibodies - interestingly though I also have a strong family history - all female members on my dads side have what I assume to be typical primary hypothyroidism or hyperthyrodism. Even weirder my sister has the same presentation as me! So it looks like sometimes the presentation you and I have is more complicated than just central! You need to see an endo who understands secondary hypo and can treat you. I had to go private and my endo is very kind and recognises secondary I can pm you his details if you like - I live in Surrey. But you definitely need treatment. My endo believes I have been hypo since I was around 16 (I am 23 now) and I got so incredibly ill before finally starting treatment and I am still struggling to get right a year after diagnosis. Vits and mins are also so important - vit d, ferritin and b12 being optimal had improved my bodies use of t4 massively! Hope this helps!
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
We have central hypothyroidism in our family. It took me a long while to get mine diagnosed and I then find out that my brother, who lives quite a way away, also has been diagnosed with the same thing. Since then two out of three of his children have the same problem, and both of my children also have central hypothyroidism. We have also been able to trace it back to my paternal grandmother so it seems to be a family thing in our family. All of us have found it incredibly difficult to get Endos to accept our low TSH/T4/T3 and to get adequate treatment. No one will accept the obvious family linkage.
I'd missed your post 1st time around and guess you missed mine a couple of days ago when I asked for people with secondary hypo.
It was suggested on this forum 4 y ago that I may have secondary/central hypo. If so, I think it's likely to be an effect of another condition which I'm trying to resolve naturally (medics couldn't handle it).
Happy to share details, symptoms etc by private message since this post is a couple of days old. A problem shared!!
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