Anyone with central hypothyroidism / pituitary dysfunction? Any tips?

[cupcakegirl]

Been doing lots of research today after getting my private thyroid results with the help of some lovely ladies here. Currently I am diagnosed with endometriosis and ME and that's it but have classic hypothyroid symptoms and have done for a decade.

After getting my results (TSH is 2.02 but FT4 at bottom of lab's reference range), looking back to my history and reading up I've been piecing things together and I think I finally may know why I've been so unwell for the last 10 years.

Essentially 10 years ago I was started on a drug called zoladex which works on the pituitary gland to create a pseudo menopause. The first six months were great and it was decided I should stay on it. Then things started to go downhill. Main factors were severe fatigue, joint pain, complete extreme loss of libido (couldn't stand to kiss, be touched etc), weight gain, hair loss, depression, brain fog, mood swings etc etc. I was diagnosed with ME even though that didn't cover most of my symptoms. TSH etc was tested, at one point I was told it was borderline. Every other time it was normal. All other tests in normal range.

I stayed on the drug for a further 18 months before stopping, so 2 years in total. Unfortunately the symptoms continued and worsened until I could no longer work. Had to then move across the country so complete change of doctors. After 5 years my libido finally came back for around a year but only when I came off all hormonal treatments. Had a marginal improvement in my symptoms. Then I became pregnant and everything went back to square 1. It's now been a year since I had my twins and my health is worse than ever, libido still absent which is always my biggest clue that something is off with my hormones but doctors will not listen.

After reading up on things today it seems that if my FT4 has dropped to the bottom of the normal range, my TSH should have gone up higher but it hasn't. From what I've read, it seems my body is using up most of the FT4 to turn it into T3 but my TSH isn't responding by increasing to make more. It seems to make sense to me that this is related to the medication I was on, given the timings and the way the drug works.

It's a long shot but I'm wondering if anyone has been in a similar boat and managed to get properly investigated? How did you handle this with your GP? I know if I go in there with this today I'm going to be treated like a crackpot but I've been living with steadily worsening health for 10 years now and I'm so far past desperate. I want to be able to pick up my own kids rather than needing my husband to do it, I am just done.

If he doesn't agree to refer me to someone or do something, I'm going to have to go private which I really can't afford but I don't know what else to do. I have no quality of life and if there's something that could help I need to at least try. I could be completely wrong but surely it's worth investigating further?

Thanks for reading if you've come this far!

[humanbean]

Do you have a Free T3 result at all?

I was on zoladex for endometriosis for a while back in the mid 1990s. At that time the rules were that nobody was supposed to be on it for more than 6 months, although I did end up on it for a period of 6 months then later, another 7 months.

The reason for the restricted prescribing, I was told, was because zoladex greatly increases the risk of osteoporosis.

I don't think my pituitary is good enough at producing TSH. I had very low in range Free T4 and Free T3, but my TSH was never very high. However, I think doctors expect central hypothyroidism to present with almost no TSH at all. They don't accept that there is a grey area, where the pituitary is capable of producing some TSH, just not enough. Doctors seem to like absolutes - either you can produce TSH or you can't.

I should point out that I think I've had low thyroid hormone levels and general hormone problems since childhood - I don't blame the zoladex for it.

I was first told my thyroid was "borderline underactive" in the early 1990s. I got my first prescription for Levo in 2013, having been told that I suffered with "subclinical hypothyroidism". I had to beg for that prescription. I was severely ill with a long-term non-thyroidal illness at that time. I couldn't cope with the Levo at all. In the end I fixed as many of my vitamin and mineral deficiencies as I could afford to test, and started treating my own thyroid. I'm a lot better than I was 4 years ago, but I've never fully recovered. I had problems with high cortisol (I haven't tested for ages so I don't know the current state of my cortisol). I think poor adrenal function is common in people on this forum, and is probably more likely the longer people have been ill.

[cupcakegirl in reply to humanbean]

Thanks so much for responding - yes, my FT3 was mid range, 4.55 (3.1-6.8). Found a really useful page from an endocrinologist that made a lot of sense to me, but it's talking about someone with a higher TSH (5.0) and FT4 just below normal range. It's saying that I'm using up too much T4 to make my T3, and my TSH should have gone up to tell it to make more but it hasn't. This is why I can't find out much about low T4 that isn't accompanied by high TSH because it seems the TSH rises as it falls usually.

Not sure what to do really - beg for a referral to an endocrinologist or beg to trial Levo, but then I think if I do that and things don't improve they'll just say "see, told you so". I don't want to be one of those people who self diagnoses on the internet but I know that something is wrong, I know I tick 90% of the extended hypothyroidism boxes, and I just want to know if this is something that might help. Doesn't seem too unreasonable to me.

[humanbean in reply to cupcakegirl]

My attitude is the polar opposite of yours. I was treated very badly by doctors for decades. They never believed I suffered severe period pain and didn't help me with it. When I finally had a hysterectomy my endometriosis was found to be "very severe". But it was never recorded on my summary GP notes. So when I mentioned it I just had doctors rolling their eyes at me. I only found out that the "very severe" comment had been made on the surgeon's letter a couple of years ago when I paid £50 for my entire GP record.

Anyway, as a result of my experiences I try to do as much self-diagnosing as I can, and avoid doctors as much as possible.

I would suggest that your first step should be finding out the state of your nutrients. No matter what the underlying cause of your health problems, getting nutrients up to optimal will help you to feel better. The ones that people start with on this forum are Vitamin B12, folate, iron & ferritin, vitamin D. Just being in range isn't good enough - you need to get levels to optimal. Most of us are low in magnesium - the test for that is useless, so people supplement anyway.

[cupcakegirl in reply to humanbean]

Thank you. I totally understand, I've been so let down my doctors in general that I don't trust them and certainly know a lot more about my diagnoses than they do.

Just come out of my appointment which went much as I suspected, although he did agree to speak to an endocrinologist and see if they think it's possible that there's an issue despite my normal TSH and my FT4 still being in normal range (just). He was quite dismissive initially but I kept talking.

He did just reveal that I'm anaemic which he didn't mention previously so I'll start on an iron supplement and will start magnesium too (I have some of both already which I used to take although it never made much difference).

Is it actually worth paying to get these things tested first, or just supplementing anyway and testing to see if there are any issues if symptoms don't improve?

[humanbean in reply to cupcakegirl]

I think some nutrient testing is an excellent idea.

For example, supplementing iron without regular testing could mean your levels go too high. High iron is very undesirable because it's poisonous in overdose and the body can't get rid of it very easily. The problem is that doctors often only test ferritin (iron stores), or they only test haemoglobin, or they only test serum iron. Different doctors have different ways of checking for anaemia. But to test iron properly, several tests are needed.

Another problem with iron, if doctors are prescribing, is that they stop prescribing very quickly, often when the patient is only slightly over the bottom of the range for several tests. For some people it can take a long time to get results to mid-range - for me it was nearly two years because I absorb iron poorly.

Vitamin D can become toxic in excess. It is another thing that doctors will stop prescribing very quickly, long before the patient has got their level up to optimal.

See replies by SeasideSusie to other people's questions on the subject of nutrient testing and results :

healthunlocked.com/user/sea...

For info on private testing, see this link :

thyroiduk.org.uk/tuk/testin...