Will I ever get treated, if my TSH is deemed 'n... - Thyroid UK

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Will I ever get treated, if my TSH is deemed 'normal'? What to expect from first endo appoint...?

sip1 profile image
sip1
22 Replies

My doctor has referred me to see an endo next month, because I took in my results from Genova that showed I have a low ft3, in range ft4 and also adrenal fatigue. (Just sent off another adrenal stress test though as I'm hoping this has improved). My TSH results that the doctor did came back normal (2.67, range 0.35 - 4.5).

My question is - will they even treat me if my TSH is normal? Don't they look at the TSH when checking to see if the medication is working or not?

I'm not sure what to expect from my first endo appointment. Is it likely they will re-check my TSH again? This is all my doctor did, he didn't do any other thyroid tests. Or are they likely to check anything else? Am I correct in saying they don't routinely check ft3? I'm worried that if they don't check that, and all other tests come back in range they'll send me on my merry way, telling me there's nothing wrong! :-/

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sip1
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22 Replies
Peacefullbliss profile image
Peacefullbliss

The endo will test TSH, T4 and T3.

HarryE profile image
HarryE in reply toPeacefullbliss

Mine wouldn't! He did T4 eventually under protest, but not T3.

Peacefullbliss profile image
Peacefullbliss in reply toHarryE

I must have been lucky then. Mine does all three plus vitD. I had to beg him to also test B12, iron and ferritin.

HarryE profile image
HarryE in reply toPeacefullbliss

It seems they pick and choose. I got the GP to do B12 & ferritin, but had to get Vit D done privately. Endo thinks I'm not ill anyway!

sip1 profile image
sip1 in reply toPeacefullbliss

Oh dear, so they don't test ft3? Makes me wonder why I'm going! I have this feeling I'm going to come away feeling disappointed and frustrated. :( Should I ask for it to be done, or is it pointless? I could always do another thyroid test privately and take it in, although I was going to wait until after the first appointment and see what they did first!!

Peacefullbliss profile image
Peacefullbliss in reply tosip1

Your endo might be ok. I would ask them to test TSH, T4, T3, iron, ferritin, B12, D3. T3 is what is going into your cells. It's the active hormone so you need to know this. The vitamins will impact the conversion process. So this too you need to know. Ask for a printout of your results when they are available. Don't just allow your endo to look at their computer screen and tell you everything is "normal". You should see the numbers for yourself. So when your in the endos office getting the results ask them to print them off for you there and then.

HarryE profile image
HarryE in reply tosip1

sip, you can only ask, they all seem to vary so much. I really hope you get a good one x

sip1 profile image
sip1 in reply toHarryE

I suppose they can only say no can't they!

HarryE profile image
HarryE in reply tosip1

Exactly! They should do it, as you know, but it's sometimes best to be prepared for the worst and then you can be pleasantly surprised.

sip1 profile image
sip1 in reply toHarryE

That's a good way to look at it :)

sandywandy1 profile image
sandywandy1

My endo tests for TSH, free T3 and free T4 (and Full blood count and thyroid antibodies the first time.) If you take in the results of the tests you had done, he will see that you are low on T3 and hopefully recommend treatment. Sandra

sip1 profile image
sip1 in reply tosandywandy1

Thanks Sandy - that's what I was hoping. I think this is why my doc referred me. Without the tests I did, I'm convinced I would not have been referred at all.

HarryE profile image
HarryE in reply tosip1

That's what happened to me too sip, my private Genova tests showed stupidly high antibodies. I had been refused a referral twice before that.

sip1 profile image
sip1 in reply toHarryE

Are you being treated now HarryE?

HarryE profile image
HarryE in reply tosip1

Treating myself, got nowhere with the NHS. Am now totally recovered!

sip1 profile image
sip1 in reply toHarryE

Wow really! That's encouraging. How did you go about treating yourself - was it trial and error? And presumably you have to check your levels regularly yourself too?

HarryE profile image
HarryE in reply tosip1

Dr Peatfield's book - followed his protocol, sorted out vit/mineral levels first, adrenal supplements, then got my own NDT when it became clear the NHS weren't going to do anything. I've just had a repeat blood test done, out of curiousity really as I knew I felt fine. You should be able to find the thread, I only posted it the other day :-)

sip1 profile image
sip1 in reply toHarryE

I have the stop the thyroid madness book, which looks like it might be useful if it ever came to self medicating. But I'll order the Dr Peatfields book, as I've heard his name mentioned quite a lot. Might be a good thing to read before my appointment! Just so I'm well informed and well armed! :)

Is it called 'Your Thyroid and How to Keep it Healthy'? They do a kindle edition which would be great :)

ann_g_k profile image
ann_g_k

You may consider taking along a printout of the following NICE Clinical Knowledge Summaries re: misleading TSH test results in case you come across resistance (though you may need to measure this against the possibility of putting the endo's back up):

cks.nice.org.uk/hypothyroid...

This isn't official NICE guidance but is provided as 'best practice'. It appears that many medics/labs aren't taking heed of this advice - if they've even come across it at all.

sip1 profile image
sip1 in reply toann_g_k

I feel really uncomfortable questioning their judgement - but if it comes to it, then I will do. I'll see how the first appointment goes, though I'm not expecting miracles - but who knows!! Perhaps the endo at Sidmouth hospital is a good one!!??!

ann_g_k profile image
ann_g_k in reply tosip1

Let us know how it goes - will be thinking of you.

sip1 profile image
sip1 in reply toann_g_k

Thank you so much :) x

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