Struggling with results. Totally baffled.

[Ilala]

I have been trying to get to grips with this for a year but due to a brain injury I’m slow to learn. It’s so frustrating.

My results from the ME test which included thyroid are as follows but I am gonna get a T3 test as well.

TSH 2.960 (0.274-4.200)

Free T4 12.34 (12-22)

B12 277 (197-771)

Folate 6.1 (3.9- 26.8)

Ferritin 30.0 (13-150)

I’m guessing this isn’t enough to tell anything? I have ordered a T3 test as well which I am waiting for. In the meantime I just found my blood results from last year which state I had

Anti-thyroidperoxidase abs H 53.1 normal range is (<34).

My free T4 last year was L 11.24 (12-22).

I didn’t get any of it sorted last year because I have been struggling to understand. I’m in so much cog fog I bought the wrong book online. Now purchased a second one and it turns out it’s the old version of the book.

Should I order saliva tests and the all four iron tests too? Or do these even exist in the U.K?

I’m sorry to sound daft but

A) do I have hypo thyroid

B) do I have hashis?

C) am I eligeable for natural thyroid supplement?

D) And how would I decide which one?

Big apologies for asking so many questions.

[greygoose]

Your FT4 is very low, but your TSH isn't very high. So, I'm wondering if that brain injury also affected your pituitary or your hypothalamus, causing Central hypo. Was this not investigated at the time? Have other pituitary hormones not been tested? If not, I think they should be. You should ask your GP to refer you too an endo to investigate this, because your FT4 says you're hypo.

On the other hand, you do have over-range antibodies, so yes, you do have Hashi's - although that won't get you very far with most GPs because they do not understand antibodies or Hashi's.

I take it you are in the UK? Well, in the UK, doctors don't like 'natural' thyroid supplements - it's not a question of being éligible, they are anti for the most part and do not prescribe. The most you will get out of a doctor in the UK is synthetic levothyroxine (T4). If you wanted 'natural' thyroid, you would have to buy it yourself, but finding out which one is a matter of trial and error. No way of knowing which one will suit you in advance.

But, don't apologise, there is no reason why you should know all this. It should be the doctors with the knowledge, but they know nothing either. And refuse to learn. So, it's down to the patient to mug up as best they can, and try and educate the doctors. A sad state of affairs! But, you'll know more when you get that FT3. Just read as much as you can about Central hypo, so that you know what you're talking about, and then you can go back to your doctor fully armed!

[Ilala in reply to greygoose]

Dear Greygoose.

Thank you so so much for replying and all the excellent advice. Gosh it’s so so appreciated.

There were no investigations at the time at all.

I’ve just done the T3 test that will be ready in three days

What other tests do I need if any ? Should I do the ferritin test, the cortisol test and the hormone tests? Gosh it’s all so expensive it’s unbelievable they put us through all this

I am seeing a natural doctor next week Dr Bernard Willis as I’ve given up with GPs I just want to get it all straight in my mind to sort of present a case so to speak.

Do the nhs recognise central hypo or am I being naive?

I’m so grateful for your reply I’m so in a muddle it’s very appreciated

[greygoose in reply to Ilala]

I think the NHS have to accept central hypo because it definitely exists. But, it does depend on the depth of knowledge of the doctor you consult.

Getting the result of your FT3 will help you build a case. If it is low, like your FT4 then Central hypo is a definite possibility. But, I wouldn't advise you to do any more private tests until you've seen this new doctor, and sounded him out. Suggest it to him, and ask if he'll test other pituitary hormones, like Human Growth Hormone, ACTH and FSH. If they are low, then there probably is damage to the pituitary, meaning that it will never be able to produce enough TSH to stimulate the thyroid into making enough thyroid hormone - although there's no problem with the thyroid as such.

Low ACTH will affect your adrenals, making your cortisol low. So, if that's the case, no need to go to the expense of a cortisol saliva test.

I don't know about the other iron tests. Best to ask your new doctor about that.

Just out of interest, you said you had your FT4 tested last year, and it was below range. Do you happen to remember what your TSH was at that point?

[Ilala in reply to greygoose]

Dear greygoose.

Wow. Thank you. This is amazing info.

I looked at my folder and my TSH was 1.42 (0.27-4.20).

I’m not sure what this means

Gosh I’m really wanting my T3 results I’ve just sent off to come back sharpish now.

[greygoose in reply to Ilala]

Your TSH was 1.42 when your FT4 was below range? That's just got to be Central Hypo, then. That is not right, the TSH should have been pretty high with an under-range FT4.

So, tell your new doctor all this, with all the numbers (dates, results, ranges) and say you think it's Central Hypo, and could he test the other pituitary hormones - as above. Unfortunately, I don't know how you test the hypothalamus - because that's another possibility for damage - but I think a scan should be done at the very least.

[Ilala in reply to greygoose]

Wow. Thank you so so much. I could never have come to this conclusion myself or had any idea because I am very very new to this. I’m really so grateful.

[greygoose in reply to Ilala]

Well, that's perfectly normal. What is not normal is that your doctor didn't spot it!

[Ilala in reply to greygoose]

Dear Greygoose.

I FINALLY have my full results. Yay!

My T3 seems ok. Could it still be central hypo. I’m not sure. What do you think?

TSH 2.15 (0.274-4.200)

Free T4 12.34 (12-22)

Total T4 77 (59-154)

FT3 4.94 (3.1 - 6.8)

B12 277 (197-771)

Folate 6.1 (3.9- 26.8)

Ferritin 30.0 (13-150)

Thyroglobulin 57.70 ( 0-115)

Thyroid peroxidase 99.2 (0-34)

[greygoose in reply to Ilala]

They are strange results, but you do have Hashi's, so that might account for it. Your FT3 is mid-range, which is strange with such a low FT4. I presume the TSH is driving the conversion hard, but if your FT4 doesn't rise a bit, this will not be possible long-term. I'm not so sure about the Central, now. But, you should keep an eye on it and test regularly.

On the other hand, your B12 and ferritin are too low, and need supplementing.

[Ilala in reply to greygoose]

Gosh. This is so new to me I’d be perplexed even by non strange results. I have admit I am really perplexed. Should I still flag up the possibility of central hypo to the doctor? I guess it can’t hurt.

I’m not sure where to go from here. The pituitary tests ?

I really appreciate this greygoose. Thank you so much !

[greygoose in reply to Ilala]

Yes, still flag it up to the doctor, and get the pituitary tests, if you can. All avenues or exploration are still valid. But, most of all, as I said, keep testing your thyroid at regular intervals. It's very likely that, unless the TSH rises - which it can't if you have central hypo - that the FT4 is going to drop, and then the FT3 will drop, too. So, you need to catch it when it does.

[Ilala in reply to greygoose]

Thank you so much for the advice. It’s very kind of you.

[greygoose in reply to Ilala]

You're more than welcome.