Where are the missing million??

[headinjuryhypo]

Head injury can damage your pituitary gland, even just a mild concussion. BBC radio's 'Inside Health' suggested there are 500k to 1m people who have pituitary damage without knowing it in the UK today. That's up to one in every sixty of the UK's population. The symptoms will be familiar to most people on this website, I'm sure: weight gain, depression, fatigue, intolerance of heat or cold, infertility, loss of sex drive. This makes me wonder - where are those missing million? Could they be here, on this website?

Am I cynical in thinking that people are 'allowed' to have thyroid deficiency because it's relatively cheap to treat, but that deficiencies in the other pituitary hormones - adrenal deficiency, growth hormone deficiency, sex hormone deficiency - are something the NHS doesn't want to find? It's obvious that most people who post are not getting effective treatment - could it be because they are only being treated for the thyroid part of their illness, and not getting the other hormones they need? If you've ever had a head injury, or cranial radiation, or a stroke, or autoimmune disease - even if these events were many years ago - you could have hypopituitarism and I do urge you to get checked out. See our website headinjuryhypo.org.uk

[beaton]

I think you got that one about right

[headinjuryhypo]

Nice to find another cynic!

[rosetrees]

You have, of course, highlighted one of the major failings of the TSH test (and one which I have a hunch might apply to me). The TSH test only diagnoses primary hypothyroidism. It doesn't show secondary or even tertiary hypothyroidism.

Is there a different treatment if the problem comes from the pituitary?

[headinjuryhypo in reply to rosetrees]

No, as far as I know it is levothyroxine whatever the cause. But if the hypothyroidism is caused by the pituitary it's important to check whether you have adrenal insufficiency (another pituitary-caused possibility) because if you have, you need to have that put right before you are given thyroid replacement.

[helvella in reply to rosetrees]

The thyroid treatment is the same in the sense of being levothyroxine with an outside possibility of liothyronine. But the management should be based on FT4, FT3 and clinical presentation - not TSH which is clearly not going to be at the expected levels.

Similarly a TSHoma (pituitary tumour that is producing TSH) causes inappropriate TSH levels and the possibility of hyperthyroidism. Treating on TSH only would only add fuel to the fire!

Rod

[headinjuryhypo in reply to helvella]

Yes, absolutely agree with you about not going by TSH levels.

[helvella in reply to headinjuryhypo]

By the way, it is good to see you here again. Your posts usually precipitate quite a response.

[headinjuryhypo in reply to helvella]

Wow, that's kind of you!

[Framboise]

Some years ago my local lab took it on themselves to test all the pituitary hormones they could think of when they saw my non-existent TSH. Everything else was fine but I have recently been referred for more tests to see if my hypothyroidism with a low TSH to start with could be secondary to something else, especially as I fell off a playground slide and hit my head as a child, and had a fall more recently which injured my SI joint and could, just possibly, have damaged as far my neck and pituitary. So far everything is normal but I haven't had the two main tests mentioned on the website in your link, so thank you for mentioning this, now I know what else to ask for.

Also I think many women, and their doctors, are unaware that sudden large blood loss in childbirth, whether or not a transfusion is given, can cause pituitary damage and Sheehan's Syndrome.

We shouldn't have to work these things out for ourselves, but I think the NHS prefer to do as little as possible to test and treat whatever a patient's main complaint is, and that thinking around it is too time-consuming and difficult. I am certain that if we paid our doctors direct, and then recouped the money, the doctors would do far more to help because they wouldn't want to lose their patients and source of income. At least I have seen this attitude in other European countries where I have worked and lived and had far more trust in, and respect for, my doctors there.

[headinjuryhypo in reply to Framboise]

That is so interesting Framboise, and very good that your local lab did that on their own initiative. I don't know what an SI joint is? (Sorry, I've just looked it up, sacro-iliac). I think the playground slide head injury is a more possible cause - a lot of the PTHP literature points out that effects can be delayed by up to decades. Yes I totally agree about Sheehan's - in fact I'm worried for my daughter because she bled at lot with her second baby, but touch wood she's OK so far. I wish we did have the continental system, my impression is it's a lot better than here.

[headinjuryhypo in reply to headinjuryhypo]

I meant to add, that there's some evidence that second injuries can exacerbate the effect of the first, a bit like missdove's experience below, and there's someone I know who wrote his story here bit.ly/1a0BTFX whose first head injury was a basal skull fracture which is a high risk for PTHP, but he didn't have symptoms until a less serious injury many years later. Also there's a study on sports concussions bit.ly/18Pn6KH that says "All of these findings suggest that sports-related repetitive TBI has a cumulative effect on the development of pituitary dysfunction." So those with football-playing sons need to be aware . .

[rosetrees]

I wanted to come back and reply again to say a HUGE thank you for this post. I have learnt so much over the last year and I'm still learning. Every so often someone says something or posts something that gives you the next piece of the puzzle. I think you might have done that.

I've thought for a while that my thyroid/adrenal problems were possibly secondary. I've been reading your website and then I went and had a bath. While I was relaxing I remembered that when I was a very small child - possibly 3 or 4 years of age, I fell backwards in the bathroom, hit the base of my head on a pipe and knocked myself out. I have no idea how long I was unconscious for, but it was long enough that my poor mother was frantic with worry when I came round. I don't remember any more than that. But I'm wondering if that fall affected my pituitary. It would explain so much.

[headinjuryhypo]

Read this case study . . ncbi.nlm.nih.gov/pubmed/179... This poor child did nothing more than fall off a bed!

[lucylocks]

Hi

If the hypothyroidism is due to pituitary damage would TSH be high or low?

[headinjuryhypo in reply to lucylocks]

According to PatientUK: "Secondary hypothyroidism is suggested by low, within or mildly elevated TSH combined with a low FT4. Differentiating this from non-thyroidal illness can be difficult and clinical history, FT3 and sometimes anterior pituitary hormone tests are necessary." Biochemical Investigations in Laboratory Medicine say "In those with secondary hypothyroidism, TSH is of no value," which I suppose is the logical conclusion. The links are patient.co.uk/doctor/thyroi... and pathology.leedsth.nhs.uk/dn...

[lucylocks in reply to headinjuryhypo]

Hi

Many thanks for the links, very interesting.

[headinjuryhypo in reply to lucylocks]

My pleasure!

[Hidden]

Thanks for the post!

We often ask people on the phone if they have ever suffered a head injury and we have close links with the Pituitary Foundation.

Perhaps you could drop Lyn an email about us cross-linking with you too..!?

[e-mail]

Louise

x

[headinjuryhypo in reply to Hidden]

Did email Lyn but no response yet

[Hidden in reply to headinjuryhypo]

Will discuss with her today..

L

x

[headinjuryhypo]

Thanks for the suggestion, I'll do that, Joanna x

[missdove]

Very interesting, as a youngster I was running around and fell very heavily on one of those old formica late 60's coffee tables I was 4 or 5 years of age, I have always been able to feel a slight difference on the left side of my forehead, it slightly points out...And I fell heavily about 2 years ago and slipped on a wooden floor and went down like a crash test dummy, fell to my knees, put my hands out then with the full force of it my forehead hit the floor. I did not knock myself out and jumped up in shock, but have always wondered what if any damage was done, that was 2 years into being unwell...All these things make you wonder that is for sure!!!