Hi Guys
Could anyone who has experience of Central Hypothyroidism advise me how they went about getting a diagnosis. How they broached the subject with doctors/endos etc., without being thrown out of the office!!
Results and symptoms I wrote on another post had people suggesting I might have Central Hypo, and they suggested I write a new post asking how to get disgnosed.
Hope you can help me.
hi Juliekat
I got a diagnosis for secondary (central) hypothyroidism.
I started by obtaining a list of private Endos from Thyroid UK and chose one near me, whose reviews I liked.
He stopped all of my meds for 2 weeks and then ran a battery of blood tests (around 20?). Those showed that my TSH was low and my T4 was also low, which is a classic sign of secondary hypo. My antibodies were fine, so it’s not Hashi’s. He wrote to my GP, who accepted his diagnosis. However, EVERY time I get a blood tests done my GP will go ‘ohh look your TSH is low…’ and I need to remind her of my diagnosis.
Getting a diagnosis is not cheap. The consultant will charge £150-£200 and then the tests. However, my Endo was kind enough to ask my GP to get the blood tests done, so I saved around £1000 for the tests.
I hope that helps
Hi PixieElv
Thanks for that. I am unfortunately not near any of the specialists on the list (am on Anglesey), so I might have to try and take a trip to Chester, which seems to be the nearest possibility.
My TSH is not usually low. A couple of times it was briefly 12.9 and then 7.4, but apart from that it seems to not get higher than about 3 or 4. My FT4 however has never been higher than 13.6 (12-22 range). Last time (Oct last year) it was only 11.6, and it doesn't matter what my FT3 or TSH are, it always is below or low in the range. That is why it was suggested on here that I might have Central Hypo. My antibodies are also fine.
I am pleased you finally managed to get diagnosed. Here's hoping I might finally get sorted soon as well.
Hi Juliekat
What you say doesn’t indicate Central or Secondary hypothyroidism, but I am no doctor.
A TSH that high doesn’t indicate secondary (or central) hypothyroidism. Normally you are looking at a at least in TSH or between 1-2 and T4 or T3 below range.
Central Hypo is VERY rare as it affects your hypothalamus. I’ve been told that if you have that you are in a hospital bed unable to function. Secondary hypothyroidism is when your pituitary gland is affected (and that is still rare) but you can still function.
It was suggested to me on here that my symptoms were very similar to Central Hypo, I’ve never managed a diagnosis from anyone. GP just kept telling me that my results were all in range even though T4 was at the very bottom, I’ve seen 3 NHS Endos but all were Diabetic specialists. I haven’t managed to find a private one near me who is a thyroid specialist so I decided to just buy in some Levo and try it. I started in April last year and I feel so much better so I’ll keep moving forward as long as I can get the Levo. Good luck getting the treatment you need.
Hi Espeegee
I am not near any specialists on the list either. People on here also suggested I might have Central Hypo as they said my TSH didn't get high enough (apart from a couple of blips - it hovers around 3 - 4) to push my FT4 up which is always low or below range. I am pleased you have managed to help yourself. I may just try and browbeat my doctor into trying me on some Levo.
When I asked to trial it the GP said sorry, it would be against practice guidelines. When I spoke to a hospital Senior reg. he said that no one would ever prescribe for me with my results. Wonderfully encouraging words 😡 If I was you I’d seriously think about self medicating because you can spend another 10 years struggling or try to help yourself and start living again like I did.
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