Any experiences of Central Hypothyroidism please

[Iheartmysmart]

Does anyone have any experience of this please? After feeling generally rubbish for a few years and being told by my GP surgery that because my TSH was in range then I wasn’t hypothyroid, I had some private blood tests done and the results indicate central hypothyroidism with under range FT4 and low TSH.

My GP has now ordered a raft of blood tests to see what’s going on. In some ways it would be good to finally have a diagnosis but Dr Google is scaring me with talk of pituitary tumours and the like.

It's more common than you might think, but isn't picked up by standard NHS testing.

Mine is caused by pituitary damage as a result of Epstein Barr virus/glandular fever. It doesn't automatically mean you have a tumour and even if you did, they are benign and very little if any trouble.

If I remember rightly, the NHS guidelines say you should immediately be referred to an endocrinologist.

In the meantime, Thyroid UK is your friend and you'll get good advice on their forum on Health Unlocked.

Thank you @NaToth. That’s helped put my mind at rest. My GP is usually very disinterested and puts everything down to age or tough luck so her swift action this time was a bit alarming.

Hi Iheartmysmart
I have always struggled with my weight, brain fog, fatigue- the usual for hypothyroidism, but my tests have always returned ‘normal’. Then like you, I started investigating and saw that I have low FT4 levels and normal-low TSH levels, so I bought levothyroxine from an online pharmacy and have started on 25mg daily. It takes a few weeks to see the difference, but I am AM noticing the difference. I am not gaining anymore weight, I am feeling less down and I have less water retention. I have an appointment with my GP next week, but I haven’t told them I have started the levothyroxine yet, I’ll tell them in the appointment. It may be a placebo effect, but I can run after the train without feeling like I’m going to pass out and I am sleeping better. There is a paper in Nature that describes the trouble that clinicians have in diagnosing central hypothyroidism, so I doubt my GP would be helpful. They will probably check my TSH levels and FT4 and see that they are within the testing lab’s normal range and say I am fine. But I have premature ovarian insufficiency and I am on HRT, with out of range C reactive protein and heart problems and difficulty breathing. Btw I am 5 feet 5 and 63 kg. I’m not saying to take levothyroxine, but i was suffering! According to expert endocrinologists who have studied central hypothyroidism, after my next blood tests if my TSH is lower than 0.5 then I am not on enough levothyroxine.