Thyroid UK

Secondary Hypothyroidism ... still a abit confused !

Saw a fantastic endo on Saturday ... confirmed I have secondary hypothyroidism (problem being the pituitary not the Thyroid gland). I have an MRI booked for Friday.

I have several other issues - chronic insomnia & issues with mood and stress & Blood pressure which all started at the same time as Hypo symptoms - My question is :

Are these symptoms Pituitary driven ? and what treatment is there for other complications from the Pituitary ( for me mainly insomnia and stress / mood issues ) ...

Also - why , when its been clear for over 10 years that I don't have antibodies did My GP never mention Secondary Hypo or the Pituitary gland - this is a very simple binary thing ! No hashi's = secondary hypo !! Have I got that right ? And also why is the THS result totally irrelevant now - that's what my endo said - bizarre, as that is the only result my GP has followed for 10 years ...

Any help clarification much appreciated ... I wouldn't have got this far seeing a great endo if it wasn't for this site ! I have been put on so many drugs over the years and been treated like a middle aged nutter - I'm also very cross about how ill I've been with so little real help from my GP

ugggggggggggggg !!!!!!

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Sorry I don't have any knowledge of Secondary Hypothyroidism just wanted to say that I am thrilled that your endocrinologist was fantastic!

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Your thyroid doesn't decide for itself how much thyroid hormone (T4 and T3) to produce. It reacts to the amount of TSH in your blood stream. Your pituitary produces TSH, not your thyroid.

If your pituitary isn't able to produce enough TSH for some reason then your thyroid won't produce enough thyroid hormone for your needs. Your thyroid may be perfectly healthy, it just isn't getting a sufficiently strong signal from your pituitary. The way this condition is treated is by providing extra thyroid hormone for you to take.

If the pituitary isn't producing sufficient TSH then your TSH can't be used as a guide to how much thyroid hormone you need, and your dosage has to be titrated based on the amount of Free T4 and Free T3 you produce.

Incidentally, people can have primary ("ordinary") hypothyroidism without hashi's. About 10% of primary hypothyroidism has no known cause. I have this, and I know there are others on the forum with the same problem.

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I just wanted to add that, although you had major problems getting a diagnosis of secondary hypothyroidism, I suspect that now you have your diagnosis you might actually get treated better than people with primary hypothyroidism.

In people with primary hypothyroidism people are told that TSH trumps everything, so even if Free T4 and/or Free T3 are very low in range, doctors will point to the TSH (assuming it is well in range) and say "Look, it's perfect, you don't need a higher dose of Levo." So we end up dreadfully under-medicated and being told we are mentally ill, exaggerating, attention-seeking, it's all in our heads etc.

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I know you are right - because that's what my doctor has done for 10 years ... its terrible really !! thanks for your response

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ps But Now I'm wondering how he diagnosed it then .... He only had normal TSH and T4 and some T3 available to him ( apart from info on zero antibodies !) - how do they test for Secondary vs Primary without Hashi's then ( ie your type ?) just wondering ?

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Secondary hypothyroidism is diagnosed if TSH, Free T4 and Free T3 are all very low in range or under the range.

Primary hypothyroidism is diagnosed when Free T4 and Free T3 are very low in range or under the range and TSH is above the range. Some of the more sadistic doctors will insist on TSH being over 10 and Free T4 being below range before diagnosing (primary) hypothyroidism, some are kinder and will diagnose sub-clinical hypothyroidism and treat the patient before results get quite that bad.

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humanbean - you are a genius !! thank you for the explanation ...

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Thanks! :O :D

Although there are lots of people on this site who have learned these things. :)

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Good result! I'm so happy for you. This endo sounds really clued up! Is he on Louise's list?

'Also - why , when its been clear for over 10 years that I don't have antibodies did My GP never mention Secondary Hypo or the Pituitary gland - this is a very simple binary thing ! No hashi's = secondary hypo !! Have I got that right ?'

No, I'm afraid you haven't. There can be many, many reasons why the thyroid isn't working properly. Central Hypo is just one of them. And the main reason your GP never mentioned it - apart from the fact that he's never heard of it - is that he goes by the TSH - exclusively! Probably never even tests the Frees. With Central Hypo, the TSH will be low, so he will believe that everything is 'normal'. He doesn't have that much knowledge of hypo.

'Are these symptoms Pituitary driven ? and what treatment is there for other complications from the Pituitary ( for me mainly insomnia and stress / mood issues ) ...'

No, the are hormonal - mostly low T3, I expect. But, don't forget that the pituitary produces a lot of other hormones, which could also be low, causing all sorts of symptoms.

'And also why is the THS result totally irrelevant now - that's what my endo said - '

Because your TSH will always be low, because the pituitary isn't producing any. That's why you're hypo, because there's no TSH to stimulate the thyroid to make hormone. Your GP has been taught that the be all and end all of thyroid care is to follow the TSH. Without the TSH is is totally lost.

'what treatment is there for other complications from the Pituitary ( for me mainly insomnia and stress / mood issues ) ...'

The only possible treatment for low hormones of any kind, with our present levels of knowledge, is hormone replacement - whatever that hormone might be. So, for your low FT4/FT3, you will be given levo - for starters, anyway. If your HGH is low, then you might get HGH injections. And so on and so forth. I really don't think you can fix the pituitary, I'm afraid. :)

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thanks so much Greygoose - knowledgeable as always !

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You're welcome. :)

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cazza1001,

There are other reasons for hypothyroidism than autoimmune disease or secondary. For example, dietary issues, congenital hypothyroidism (failure to develop a working thyroid) or the result of surgery. The most common cause of hypothyroidism worldwide is iodine deficiency - though in the USA and the UK autoimmunity is much more common.

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thank you so much !

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cazza1001,

You might find this paper of some use and/or interest:

academic.oup.com/jcem/artic...

Please don't for one minute expect to read it all at one sitting, understand it all however many sittings, or even feel you should take it all in. That is not the point - I hope you might get something from it.

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