Test Results, losing hope, please help! - Thyroid UK

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Test Results, losing hope, please help!

AbigailHolywood profile image
9 Replies

I have another thread where I am documenting my journey so I will update there too, but I just received the results (pic attached)

I asked the receptionist for them, she happily handed them over and when I asked if I could arrange to see the doctor she said it says on screen no further action! I’m so disappointed as this GP seemed so helpful and knowledgable about thyroid. The receptionist said to call tomorrow for a same day appointment and hopefully the Dr will hear me out. As my last results were similar (different doctors surgery) my current GP said to me those numbers would have rang alarm bells for her and she would have investigated further, saying “I treat the patient based on symptoms not numbers” when I asked if those numbers were low enough for treatment, im disheartened.

Would these numbers make you feel unwell? This is really messing with me emotionally now, I’m starting to think it’s just all in my head and I’ve no right to feel rubbish I must just be a hypochondriac because no one seems to be listening or thinking these results warrant any action.

(Gp also said she would test T3, which she hasn’t)

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AbigailHolywood
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AbigailHolywood profile image
AbigailHolywood

Adding the other results here

Test results
AbigailHolywood profile image
AbigailHolywood

Adding results

Test results
SeasideSusie profile image
SeasideSusieRemembering

AbigailHolywood

You posted these thyroid results last week:

Serum free T4 level 11.2 pmol/L (12-22)

Serum TSH 1.31 mU/L (0.27-4.20)

Your new results:

Serum free T4 level 12.1 pmol/L (12-22)

Serum TSH 1.82 mU/L (0.27-4.20)

I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low/below range. Your results fit perfectly into this criteria.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

In Primary Hypothyroidism, which is where the thyroid fails, the TSH will be high.

However, with Central Hypothyroidism the signal isn't getting through for whatever reason so the message isn't getting through to the thyroid to produce hormone, hence low FT4. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).

As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before.

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:

bestpractice.bmj.com/topics...

and another article which explains it:

ncbi.nlm.nih.gov/pmc/articl...

and another here:

endocrinologyadvisor.com/ho...

and another one:

academic.oup.com/jcem/artic...

You could do some more research, print out anything that may help and show your GP.

You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email ThyroidUK at

tukadmin@thyroiduk.org

for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.

From your other results

MCHC: 350 (315-345)

MCH: 32 (27-32)

This could be a sign of macrocytic anemia which happens when the blood cells are too big and can be due to not having low or deficient Vitamin B12 or folic acid - ask GP to test these. Also ask for Vit D and Ferritin whilst these are being done, this then means all key nutrients have been tested.

Low creatinine - not too sure so wont comment.

SlowDragon profile image
SlowDragonAdministrator

Strongly recommend getting full thyroid and vitamin testing done privately yourself

Your GP was supposed to do full iron panel test including ferritin

There’s no folate, B12 or vitamin D results either

Are you vegetarian or vegan?

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Recommended on here that all thyroid blood tests early morning, ideally before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Come back with new post once you get results

MrsButler profile image
MrsButler

Hi, I totally understand the doubting yourself. We have similar results. I'm having bloods on Friday and I just know the T4 is going to just in range. It's frustrating, and unfortunately with the thyriod I think it can be a waiting game until your results are as "bad" as you've been feeling for ages!

My gp is pushing it as menopause, (maybe it is that too) but at least you're too young for them to jump to that conclusion.

Have you had other pituary hormones tested? Like prolactin?

Hedgeree profile image
Hedgeree

Hi AbigailHolywood,

I've also been in a similar situation with the gp not taking my blood results seriously (below range FT4)

Unfortunately it took some time and writing letters to the surgery for both the gp and the practice manager, outlining my problems and what I wanted them to do about it. (Polite but to the point!) before they acted on my concerns.

You do start to doubt yourself but as I've been feeling so ill I managed to keep on going as I deserve better treatment and I don't want others at my surgery to be treated like I have so I made it my focus.

I've been told that it's all in my head/a symptom of anxiety/come back in a year's time for tests etc but with the support of the forum I've managed to get a referral and have been seeing an NHS endo this year.

I have a multinodular goitre and I'm having pituitary tests done so still only at the beginning of a diagnosis.

Don't give up!!

AbigailHolywood profile image
AbigailHolywood

Many thanks for all of the replies, very very much appreciated.

I ended up phoning a private GP last night, to get some clarification on the results and what he recommended, I’d forgotten I have access to this through our health insurance.

I won’t bore you with the details but his comment of “there is no such thing as secondary hypothyroid you either have hypothyroid or you dont” I lost all confidence in him after that.

He did go on to say that with my results he would personally be looking at a trial dose of Levo and retesting in 6 weeks.

I have a phone appointment sometime before 1pm with my local GP… although the helpful GP I first spoke to about all of this isn’t in today, and is off for 3 weeks! So, wish me luck that whichever doctor calls me, is willing to listen and wants to help.

Will update after she has phoned me.

AbigailHolywood profile image
AbigailHolywood

I requested a female GP, a male doctor called me and he was awful, just awful. Said my results were entirely normal, and that he’s very sorry but he wasn’t going to debate it and he would be morally going against all guidance to prescribe me anything. He said best he could do was refer me to endo and that referral would likely be bounced back unaccepted, because there’s nothing wrong with me.

I am sat here crying, embarrassed and so annoyed with myself for letting myself believe I would finally get help this time,l. I keep being told I’m absolutely fine, it’s all normal and to go away, it’s driving me crazy, I keep questing myself and thinking maybe I am just imagining it all.

After the positive talk with my usual GP last week I was so hopeful and now I’m back to feeling crushed and that no one will ever help me.

AbigailHolywood profile image
AbigailHolywood

Now on hold to speak to a private GP I have access to through my health insurance. Hopefully they will be able to clarify what I have been told, or better yet, actually help me.

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