Just shown my MonitorMyHealth thyroid test to the surgery nurse.

[MaggieSylvie]

I showed my complete records to the nurse and she said "They are all normal". Why do you want to see an endocrinologist? I told her that my GP had prescribed Levothyroxine last year because, as she said, I had an underactive thyroid, based on my TSH being 0.02. Only T4 was also tested and it was 15.9. I did not continue with levothyroxine. I have taken a few tests since then, and the latest, by MMH showed FT4 13.30 (12-22); TSH 0.33 (0.27 - 4.2); FT3 4.80 (3.1 - 6.8). I already provided these results to you and it was the opinion of some of you that I probably had central hypothyroidism. She asked me if I had any symptoms and I said No. At least she asked me! I expected her to be more knowledgeable but I am disappointed.

At least I have been told to get an NHS blood test and the printed form is much more extensive than any others have requested. I will do that ASAP and get back to you with the results. I will, of course, arrange for blood to be taken before 9 am.

I am suffering now from a fifth compression fracture (I think - can't be confirmed until I get an MRI) and I have had a full week of being constipated after a full week of diahorrea. The nurse just told me to drink more and get whatever exercise I could. Fair advice but I don't actually feel constipated. If what my GP said a year ago is true, I should be very sick by now.

[greygoose]

I told her that my GP had prescribed Levothyroxine last year because, as she said, I had an underactive thyroid, based on my TSH being 0.02.

A TSH that low would suggest - but not confirm - hyperthyroidism, rather than hypothyroidism. So, I can't understand why she gave you levo.

If what my GP said a year ago is true, I should be very sick by now.

Doubtful it was true, given your results. But, have your antibodies ever been tested? If you have Hashi's, levels can jump around.

[MaggieSylvie in reply to greygoose]

I don't think antibodies have been tested. They're not on the request form either. I don't seem to have any symptoms relating to thyroid problems.

[greygoose in reply to MaggieSylvie]

Testing for antibodies should be one of the first tests that's done, along with TSH. But, doctors rarely do it because they don't understand the significance.

There are over 300 known hypo symptoms. A lot of them you wouldn't even associate with thyroid, but as thyroid hormone is needed by every single cell you your body to function correctly, when it is in short supply, all sorts of unconnected things can go wrong.

I'm not saying you do or you don't have hypothyroidism, but your results are rather strange:

FT4 13.30 (12-22) 13.00%

TSH 0.33 (0.27 - 4.2)

FT3 4.80 (3.1 - 6.8) 45.95%

At 13% through the range, your FT4 is very low. Your FT3 isn't too bad, though - which is probably why you don't have symptoms. It's just that 'normally' - if I can use that word - in someone with no thyroid problems (euthyroid) we would see a TSH of around 1, and FT4 around 50% and an FT3 just slightly lower.

With an FT4 that low, and FT3 possibly sub-optimal, one would expect the TSH to be much higher.

TSH - Thyroid Stimulating Hormone - is a pituitary hormone. When the pituitary senses that there's not enough thyroid hormone in the blood, it produces more TSH to stimulate the thyroid to make more hormone. The thyroid responds as well as it can.

With that low TSH, your thyroid isn't getting the necessary stimulation it needs to make the right amount of hormone. So, as often happens in these cases, the thyroid starts to make more T3 than T4, to maintain the necessary level of the active hormone (T3) to keep you functioning. But, this cannot last forever, and eventually, the FT3 will drop, too.

So, it appears to me that what these results are suggesting is a problem with the pituitary, rather than the thyroid itself. And, it needs further investigation. Starting with thyroid antibodies, just to rule out that possibility.

The problem with the medical community is that almost none of them know enough about thyroid to understand the implications of thyroid blood results. They just see that everything is somewhere within the range, and assume that that means everything is fine. They do not take into considerations the interaction between the three results and what they mean. I've given you my interpretation as I see it. The majority of doctors would either say I'm wrong, or just sit and gaze at me with their mouths hanging open and a glazed look in their eyes. 🤣 Up to you whether you take on board what I'm saying and keep on testing, or not. x

[MaggieSylvie in reply to greygoose]

This is very depressing. The nurse said the doctors would not even look at my private test results (I explained they use an NHS hospital lab), so even if I got my antibodies tested, the only people to be informed by this would be you and me. You have said before that it looks more like a pituitary problem, but I can't argue with someone who has medical training because I am just not an expert. She didn't seem to have heard of HU. And she didn't spot any strangeness in any of the results.

I guess I'll do an 8.30 am test for the B12 + folates, bone profile, FT3, FT4, HbA1C, LFT'S, FBC, TSH, U+ E (inC eGFR) and Vitamin D. Perhaps antibodies are in that list but under another anacronym.

I am forever in your debt for the help you have given me. Many thanks.

[greygoose in reply to MaggieSylvie]

It's true that the majority of doctors will not accept private tests, but, that is just down to ignorance rather than any logical reason.

I can't argue with someone who has medical training because I am just not an expert.

Why not, I do! lol And, I've had doctors admit that I know more about it than they do. And, that has often worked in my favour. The thing is to do your homework and know what you're talking about, and speak with conviction.

And she didn't spot any strangeness in any of the results.

Well, of course she didn't. She doesn't know enough about how it works. She's not any sort of thyroid expert, she hasn't been specially trained in the subject.

Perhaps antibodies are in that list but under another anacronym.

No, they quite definitely not in that list. The only antibody your doctor would test would be the Thyroid Peroxidase Antibody. And that is either called by its full name, or TPO antibodies/TPOab/antithyroid auto-antibodies/microsomal antibodies.

[MaggieSylvie in reply to greygoose]

Thanks, Greygoose. I only had ten minutes with the nurse and I was late arriving, partly due to my lack of mobility, so that put me on the wrong foot. (I did get my ten minutes after a wait in reception). I gave her an A4 sheet with all my thyroid results from a year or so ago and she could not have looked at them with any degree of scrutiny, which I took to mean that she wouldn't be able to translate any of it. I realise that I am going to have to do my homework in order to fight any sort of case. I'm in terrible pain from the fifth compression fracture and was just not strong enough to fight anything. I had a long list of things of things to talk about, including B12 and she put that and Vit D on the blood request form. Antibodies - well, I can hardly go back (I wouldn't get an appointment anyway) and request them to be tested as well. She said that since my results were normal, why would I want a referral to an endocrinologist? I just don't have the reasons on the tip of my tongue to argue that my results are not normal. It was a year ago that my then GP said that my thyroid would be unlikely to support me for a year.

I could do with someone to fight my case to my partner who is not interested in anything that is wrong with me but who shouts at me for having this pain and cannot understand that doing a few chores today took me all day and knocked me out. (My home help is on holiday so the onus is all on me). Not interested but won't allow me to educate him. Honestly, the thyroid is the least of my problems. But when the time comes (and I have several appointments coming up with the physio, the doctor and blood tests) I will try to get my head round how pituitary and thyroid as well as all the other related topics work together. I see the physio next week in the hopes of getting an MRI referral. Then my annual review with my GP is at the end of the month. That would be a good time to do some explaining if I can.

[greygoose in reply to MaggieSylvie]

Oh dear. That nurse sounds exceptionally ignorant. Yes, if you want to get anywhere with this, you are going to have to do your homework, I'm afraid. But, she's making the mistake most doctors make, thinking that if something is in-range, it has to be good. They just don't understand what ranges are or how they work. For you own information - although you could try passing it on to this nurse, if you think it would help - have a look at this article which explains about ranges:

The normal range: it is not normal and it is not a range

pmj.bmj.com/content/94/1117...

Sorry to hear about your partner. I had one like that. Thank god I divorced him before I got too ill, because he would not have tolerated a sick wife. Only he was allowed to be ill.

Frankly, antibodies are probably not that important, because doubt you have autoimmune disease, it was to rule it out, really. The important thing is to keep on testing because the situation could change rapidly. And, if you ever have any questions, don't hesitate to ask them here. There will always be someone to help you.

[MaggieSylvie in reply to greygoose]

Thank you so much, greygoose. This is one of your replies that I am saving😊It is not normal and it is not a range. I will read your link. Later when I can concentrate on it.🤗

[greygoose in reply to MaggieSylvie]

You're very welcome.