This is my first post here, thank you - Thyroid UK

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This is my first post here, thank you

Ginny52 profile image

I became unwell at the end of last year- muscle/joint pains, crushing exhaustion, sore eyes, hair falling out etc. Plus constant fight not to lose more weight (current bmi 17).

Thyroid nodules had been noted a couple of years previously, so when tests showed my tsh to be low and declining, my excellent gp referred me to an NHS endo clinic.

The wait was long, but the consultants were very nice- they just don't seem able to offer much hope that the treatment they can offer (RAI, some vague time in the future), would make me feel any better. That being so, I feel reluctant to ask for RAI, knowing that the likely destruction of my thyroid function would leave me totally dependent on NHS treatment, when there seems to be such controversy coupled with reluctance to accept patient's input about how ill they feel

I also find my blood test results confusing.

In truth, I had considered suicide, because I feel such a burden on my family, and because hope of feeling better seemed to be vanishing. The only help has been finding out that I'm not alone!

My thanks, Evelyn

34 Replies
shaws profile image

Welcome to our forum Evelyn, and you are not alone as you will find most on this forum have had difficulties with the 'modern' method of diagnosing/treating. I will give you a post from Lorraine Cleaver who was in a low state when joining but is pushing ahead with a Petition before the Scottish Parliament to try to change attitudes towards diagnosing/treating patients.

Those who have already had RAI will respond too

We can rise above everything with assistance from the members.

Ginny52 profile image
Ginny52 in reply to shaws


Thank you so so much, Shaws

Do you think someone could help me make sense of my test results?

If you post your test results, including the reference ranges, we might be able to help. And have you been given any treatment? If yes, what and how much?

Ginny52 profile image
Ginny52 in reply to humanbean

Thank you all so much xx

Please know your situation is not hopeless. Lots of us have been in your place and slowly with help from this forum we are recovering normal life. We might not be exactly as well as before but well enough to enjoy life and keep working.

Thyroid disease can be a slow down and a slow up but there's hope. The NHS can provide some blood tests but a lot of it is up to us. Learn as much as you can from here.

As suggested post blood test results here so others can help.

Ginny52 profile image
Ginny52 in reply to Nanaedake

Thank you xx ❤

Thank you, humanbean;

They didn't put reference ranges, but here are the numbers

TSH 0.1 mU/l

fT4 12 pmol/l

fT3 4.5 pmol/l

eGFR 73 ml/min

prolactin 183 mU/l

LH 16.7 lU/l

FSH 24.5 IU/l

cortisol 347 n/mol

IGF 1 10.5 nmol/l

TPO abs neg

celiac screen neg

250HD 52.2 nmol/l

As you can see, they were very thorough, and nice:

They just didn't see why any results here would be related to my symptoms, or how treatment could help me


humanbean profile image
humanbean in reply to Ginny52

I have to make clear that my comments are going to be on the basis of the reference ranges I'm familiar with, so my conclusions could be very wrong. For example, Free T4 could have a reference range of 7 - 14 or 12 - 22 or something else entirely. With a result of 12 your level could be in the upper half of the range or right at the bottom. Further testing could also show your levels of hormones fluctuating and leading to different conclusions.

Please note that thyroid hormones (Free T4 and Free T3) are produced by the thyroid. (Stating the obvious!)

TSH (Thyroid Stimulating Hormone) is not a thyroid hormone it is produced by the pituitary.

Assuming the reference range for Free T4 is 12 - 22, then your Free T4 is right at the bottom of the range.

Free T3 often has a reference range of 3.1 - 6.8. Your Free T3 is below the middle of that range.

Your TSH is very low for someone with such low Free T4 and Free T3, we would normally expect someone to have a higher level of TSH with low Free T4 and low Free T3.

The higher the TSH the more thyroid hormone ought to be produced. When someone's thyroid is damaged it is unable to produce sufficient thyroid hormones. So TSH gets higher and higher trying to prod the thyroid into producing more thyroid hormone. This situation occurs in primary hypothyroidism, which is the most common form of hypothyroidism. The results seen in testing are high TSH, low Free T4 and low Free t3.

In your case it would appear likely that your pituitary isn't capable of producing enough TSH, so your thyroid simply isn't being told forcefully enough what to do. Your thyroid may even be completely healthy. The issue is with your pituitary. This condition - low TSH, low Free T4 and low Free T3 - is referred to as central hypothyroidism.

The organ which tells your pituitary what to do is the hypothalamus. It's a cascade of instructions - the hypothalamus tells the pituitary what to do, and the pituitary tells the thyroid what to do. Any step in this process can go wrong.

If the thyroid fails this causes primary hypothyroidism.

If the pituitary fails this causes secondary hypothyroidism.

If the hypothalamus fails this causes tertiary hypothyroidism.

Secondary and tertiary hypothyroidism are collectively referred to as central hypothyroidism.

In each case the end result is the same. The thyroid doesn't produce enough thyroid hormones. And in each case the treatment is the same. People have to take the missing thyroid hormone(s) in pill form.

I think you probably have central hypothyroidism. Either your pituitary or your hypothalamus is malfunctioning. The end result is that your body cannot or will not produce enough TSH to instruct your thyroid properly.


Whatever you do, don't let anyone tell you that you are hyperthyroid (have an overactive thyroid).

Don't let anyone put you on drugs such as carbimazole which is for treating overactive thyroid, because you don't have it. People with hyperthyroidism have a low TSH, high Free T4 and high Free T3.

If you were given carbimazole for hyperthyroidism your thyroid hormone would end up severely suppressed below the reference range and you could go into a coma.

Whatever you do don't let anyone give you RAI either, which is another (permanent) treatment for hyperthyroidism which will kill off your thyroid. There is no reason to remove your thyroid either unless you develop cancer or thyroid nodules that are dangerous to you for some reason.

Ginny52 profile image
Ginny52 in reply to humanbean

Humanbean, many many thanks. That is the conclusion my reading led me to as well. I think the hospital lab were working on the 12-22 ft4 scale too, because the endo agreed with me that mine was low end.

Agree about anti thyroid meds, although since the hospital diagnose subclinical hyper, my first thought was to want just that in the hope of feeling better.

I thought, could the declining tsh mean my pituitary is doing its best but t4 still inadequate? Could my problems, apart from the weight loss, be hypo?

Endo says other pituitary functions being ok (FSH, prolactin etc) exclude pituitary failure, but I do have terrible headaches)


humanbean profile image
humanbean in reply to Ginny52

You definitely don't have subclinical hyperthyroidism - do not accept anti-thyroid drugs if your situation stays the same as was shown in your current results.

The pituitary produces lots of hormones, not just TSH. It is possible that you have other hormones which are low.

I'm not sure how pituitary dysfunction is tested for - perhaps some of the ones you've listed were to investigate the health of your pituitary, but I don't know any common ranges for most of those things. I assume they would look for things like tumors or damage from accidents with MRI scans. Did they do that? Have you ever had whiplash or car accidents? I know that is believed to be one possible cause. Another cause is extreme bleeding during childbirth (Sheehan's Syndrome).

If you have had pituitary dysfunction ruled out then your hypothalamus needs to be checked out. It also produces several hormones, but I know even less about that than I do about the pituitary. In thyroid terms, the thing of interest in connection with the hypothalamus is thyrotropin-releasing hormone (TRH). Thyrotropin is another name for TSH.

Ginny52 profile image
Ginny52 in reply to humanbean

Yes- I think I should probably ask when I go to see my gp. I sort of thought they would need to do an MRI to be sure, but obviously I don't know. A lot of this seems to involve me knowing better than specialists- but I'm housebound and they're working!!!

I wonder what would happen if I tried T3 bought online? X

Ginny52 profile image
Ginny52 in reply to humanbean

Certainly, it looks as if having my poor thyroid killed isn't called for (good)

My test numbers are a bit odd, aren't they? I don't see how I can be sh either, apart from the weight loss x

Ginny52 profile image
Ginny52 in reply to humanbean

I did have massive haemorrhage/transfusion etc after miscarriage once, but that was 24 years ago

Ginny52 profile image
Ginny52 in reply to humanbean

Hello again everyone!

Two months have gone by, and in some ways all that's happened is that I feel more tired and ill. Humanbean, may I ask you some more questions?

There are some things that just don't seem to make any sense, and I don't seem to be getting anywhere. In a way I feel so ill I have very little to lose, and it seems to me that the only choice I have, other than putting myself out of my misery, is to buy medication online and experiment, but I can't afford professional advice.

Many many thanks, Ginny

Ginny52 profile image
Ginny52 in reply to humanbean

The endocrinology dept at Chelsea and Westminster insist that my 'problem' is hyperthyroidism, but that this has very few symptoms. They are adamant that examining my pituitary is not justified if other pituitary hormone levels are at acceptable levels (except tsh, growth hormone not measured). I read wiki on Sheehan's syndrome and I think they're just wrong, but I am left feeling like an idiot hypochondriac who argues with doctors. I don't know what to do, and I have to say, I just feel too ill and tired to go on.

Thanks, Ginny

Ginny52 profile image
Ginny52 in reply to humanbean

I feel silly second guessing a consultant, but from the reading I've done, I thought central hypothyroidism too. She was really nice though, and when I said I thought my dropping tsh might have a non-thyroidal endocrine cause, she said if I wanted it they would test for pheochromocytoma. I can't believe I had the nerve to ask and it shows how kind she was- I thought she would roll her eyes inwardly and think 'that person googles too much'. I underestimated her. Pheo causes weight loss and low tsh sometimes too, and crashing headaches. I was amazed at her niceness and open mindedness.

Oh, I forgot- hot nodules seen on isotope scan

Hi, you do really need to get hold of the lab reference ranges for people to make sense of these as laboratories vary.

The thing that is missing is vitamins, vit D, B12, ferritin and folate. Also did they do TgAb? Thyroglobulin?. We can't tell what's happening properly until we have the lab ranges for FT4 and FT3. Try to get them.

Those are all the ones they sent me from July- I asked for some more bloods this week to try and determine the direction of travel with my tsh.

I don't go back till January, but I'm seeing my gp at the end of next week about the hellish headaches, so I can ask him then about the refs.

Lovely consultant says those are enough to exclude pituitary dysfunction.

I did ask whether 12 wasn't at the lower end for ft4, and she agreed with me. Still don't get why if tsh is dropping off the bottom end and pituitary ok, why ft4 isn't higher x

Nanaedake profile image
Nanaedake in reply to Ginny52

You've had a good responses from Humanbean. The ranges will help to confirm either way but the other factors you mention make it more complicated.

Ginny52 profile image
Ginny52 in reply to Nanaedake

Brilliant response, and thank you everyone so much. Suffering alone is horrible x

Nanaedake profile image
Nanaedake in reply to Ginny52

Yes, we've all had too many years of suffering alone. No longer!

Ginny52 profile image
Ginny52 in reply to Nanaedake

Thank heavens for the days of the internet and kind people using it

MissFG profile image
MissFG in reply to Ginny52

Your definitely not alone this forum helped me so much when I was first diagnosed. I can now manage my Hashimotos with my Endo's support!

Please keep positive it sounds like you have good support from your doctors and everyone will help you on here.

If you are unwell or struggling don't worry about calling your Endo's secretary, when I have my Endo has called me back or they've got me into clinic. Don't be afraid to ask for help is what I'm trying to say you will get there. Big hugs x

Ginny52 profile image
Ginny52 in reply to MissFG

I don't feel alone now-that was the worst! Everyone here has been terrific. My lowest time was last week, I think, when the endo (who I like very much) saw that I was confusing 'treated' with 'fixed', and didn't want to encourage false optimism. But I found the best support here- love you all, tons of hugs back xxxx

SlowDragon profile image

You may find you have low vitamins. Ask GP to test vitamin D, folate, ferritin and B12

Always get actual figures and ranges on all tests

A couple of things I forgot to put in- I have Ehlers Danlos syndrome, which often seems to confound normal diagnostic tests. Also, I'm going to go and see Professor Studd, who does gyneacological endocrinology, because I seemed more or less ok till post-oophorectomy, and I keep reading that endocrinology is all about balance (which makes it odd that NHS endocrinology seems to ignore sex hormones completely)

I am just so cheered, thank you all so much xxxxx

Saraband profile image
Saraband in reply to Ginny52

Hello Ginny52, just catching up on your thread here. So glad you've received such great advice and information. I can't add to any of that but I wanted to mention that my gp has very recently said that the oophorectomy I had in 2004 was quite possibly what kickstarted my endocrine issues. I had privately been thinking the same; it helped me a lot to have her suggest it independently. I have nothing like the challenges you've been facing but I can relate on that score. (My oophorectomy was actually unnecessary; the consultant suggested he do it alongside the very necessary emergency hysterectomy. I was much too ill at the time to consider the ramifications. If I'd known then what I know now!)

Wishing you all the best with regaining your health - and getting your life back :-)

Ginny52 profile image
Ginny52 in reply to Saraband

Still trying to get the hang of this. Did I manage to reply?

X ginny

SlowDragon profile image

If you google hysterectomy and hypothyroidism you will see yes this can be linked

Ginny52 profile image
Ginny52 in reply to SlowDragon

I do think the small amounts of testosterone my ovaries were producing were important unfortunately! I get hrt, but just oestrogen. My husband certainly thinks I only fell apart after that. Prof Studd always gives a testosterone implant at the time of the surgery, so although it's quite a lot for us, husband points out that if the alternative is feeling I can't go on like this, I should be happy I can use my tax rebate from being too sick to carry on working🙂

Re: Suicide. There's a Jack lemmon film in which on feeling he'll never get the woman he loves, despairingly decides to commit suicide with a gun and accidently shoots himself in the leg. He gets over the woman in a month but can't walk properly for six!

I try to bear this story in mind when feeling v. low


This forum has been wonderful! I don't know what would have become of me in pre-internet days, but not now. I had an idea last night about what to do, and the first bit of it was absolutely not to give up.

The people supporting one another here are unbelievable.

I think the very first thing I've learnt is that NHS endocrinology, however wellmeaning, does not necessarily have all the answers

Jack Lemmon ends up in one piece though.....even his broken heart mends!💔💓x

Thank you all so much

I'm not sure I put posts in the right place, but I feel so dopey and ill.

Thank you, Ginny

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