Opinion on test results please?: NHS test results... - Thyroid UK

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Opinion on test results please?

Harebell profile image
22 Replies

NHS test results: TSH <0.03, T4 20, T3 4.33.

I'm taking 150mcg thyroxine and 10mcg liothyronine. GP wants to reduce the thyroxine dose. Any comments gratefully received, thank you.

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Harebell profile image
Harebell
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22 Replies
Harebell profile image
Harebell

Thanks very much for your reply. GP thinks T4 is nearly too high and TSH is too low, and I presume she doesn't know about T3.

I've not had ferritin checked for a while, it's always wanting to be low, and I'm not supplementing it anymore because I couldn't tolerate ferrous sulphate or fumarate. I need another kind but don't know what. They were upsetting my gut and giving me headaches at anything more than one tablet.

I've asked for Vit D test and been told they no longer test it on the NHS. No idea what my folate and B12 levels are, not sure if they've ever been tested.

How do they come into the picture?

I was thinking of getting a thyroid panel done privately, including Reverse T3, as I've never tested for that. Do you think that would be indicated in my case?

JOLLYDOLLY profile image
JOLLYDOLLY

Your TSH is low but does your thyroid work at all? The reason I ask, is my partial thyroid has never worked, so naturally low on TSH. I am waiting on new results, last time it was 0.09. The medication does the work instead. I was on 250 mcg of thyroxine for T4, but now 200 which is why I am being retested. I call it my natural dose as it was the dose I was on for many years without problems. I also take 20 mcg of lithyronine (T3).

The reason I ask about your thyroid is, that if it is working and just needs a top up with the medication, then you may be over prescribed, as the TSH is made by the body naturally and would be suppressed. Has your GP given you any ranges especially with the T3 side?

If you live in the UK it is unlikely that they will give a prescription for T3 now. I am supposed to be weaned off it. They say it doesn't work and is dangerous but it is basically down to expense for the NHS. It does work, trust me.

I would ask for your ranges and if still not happy, seek a second opinion. I personally have not got a lot of faith in GPs knowledge these days regarding thyroid conditions.

The GP should do a full blood count to check your ferritin levels too. I also have B12 deficiency, anaemia and vitamin D deficiency. Unfortunately they walk hand in hand sometimes and have similar symptom's.

Hope this helps :)

Harebell profile image
Harebell in reply to JOLLYDOLLY

I don't know if my thyroid works or not! How would I know? I've been hypothyroid for about 15 years and have Hashimotos.

I've not got the ranges. The doctor did ask what I wanted to do, and I said stay on the same dose, because I don't really know what is best and I didn't know how to interpret the results either, but I didn't think I wanted to reduce the dose which is what she was suggesting.

I am trying to keep in with my current GP. Touchwood, they are still prescribing liothyronine (UK, yes). But my previous GP was trying to get me off the liothyronine, about two years ago. His argument was that I didn't need it because my test results were "fine" (if they were, who knows). My argument was that my results were fine BECAUSE I was taking it! However, that doctor also said there was no test for T3, you just tested TSH and that was the test for T3 (honestly).

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Harebell

Your GP needs to be retrained then lol. They should check TSH, T4 and T3 (they call it Free T4 and T3). The reason I asked was I was not sure, whether you had had your thyroid removed which would mean, like me that the medication did the work of the thyroid, hence the TSH level being low. Or whether your thyroid was still working but needed help - that is the only reason I asked for clarification.

I was also told last time, that my results were in range and fine for all three tests, so the liothyronine as you say does work. The so called professionals contradict themselves all the time. As you pointed out, keep with your current GP especially whilst they are still prescribing.

Take care :)

Harebell profile image
Harebell in reply to JOLLYDOLLY

I see re the thyroid ;-) It's still there but whether it's doing anything anymore, I don't know.

Yes, I just hope they keep prescribing, but does it look like they are going to try and phase it out completely on the NHS?

Thank you; you too :-)

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Harebell

They are trying too phase it out mainly because of the price regarding Lithyronine. By all accounts the NHS are being charged £9.22 a tablet as there is only pharmaceutical company supplying the NHS and they charge what they like. My Endo told me in her opinion that it was a waste of money and the money could be spent on more worthy causes. she also tried to imply that it causes heart attacks and other problems and was dangerous. She then said I did not need it and would not prescribe it. In fact I reported her for her unprofessional behaviour. It didn't get me very far, but hopefully made her think about her conduct.

But the research she referred to had no relevance to me or others. Any medication taken in access would be harmful. But some people evidently use it and thyroxine as a stimulant for the body beautiful and a slimming agent, taking several a day with a normal thyroid function.

There was a suggestion many years ago, when my problems began, that a Dr had been struck off for prescribing thyroxine in that way. How far that is true I don't know and I don't care. At the end of the day, I am not abusing my body, I just need to feel "normal" again and have quality of life, like we all do. I think we are being penalised by the so called professionals, as the powers that be, won't endorse the T3 medication, thus making it cheaper to supply the NHS. There seems to be a huge divide between certain professionals and us, the patients. :(

shaws profile image
shawsAdministrator

This is a post and many doctors who were taught at the same time as Dr Derry had the same viewpoint. Before the TSH and blood tests were introduced we were given NDT due to symptoms alone on a trial basis and if we felt an improvement the dose was increased until we were well.

thyroid-info.com/articles/d...

Glynisrose profile image
Glynisrose

Go by how you FEEL not numbers.

Harebell profile image
Harebell in reply to Glynisrose

Problem is I have ME also, so always difficult to tell what is thyroid related and what is ME :-(

ElRR profile image
ElRR

Are these free T3/T4, or total?

Harebell profile image
Harebell in reply to ElRR

I don't know - total? Just what the NHS tests.

Harebell profile image
Harebell

Is liver alone enough to raise ferritin? How much would you need to eat of it?

SeasideSusie profile image
SeasideSusieRemembering in reply to Harebell

Harebell I couldn't tolerate iron supplements and I managed to raise my ferritin level from about 35 to about 85 just by eating liver once a week. I aim for about 120-140g in a meal, I just gently fry it in butter.

For iron supplements you could try iron bisglycinate which is a more gentle form, look for Solgar Gentle Iron. It only has about 20-25mg iron. As with other iron tablets, always take it with 1000mg Vit C to aid absorption and help prevent constipation.

Harebell profile image
Harebell in reply to SeasideSusie

Thanks very much for that. That's amazing, I knew liver was good but didn't know it was that potent. I'll put it on the shopping list. Lamb's liver?

Thanks for the tip about bisglycinate. I'll look out for that. My ferritin just plummets when I don't take iron, but I've not been supplementing for a while now, so it's probably rock bottom again :-(

SeasideSusie profile image
SeasideSusieRemembering in reply to Harebell

I use lamb's liver, it's milder than some. Chicken liver is supposed to be mild. If you like pate then that's OK but not as potent. If you do casseroles, cottage pie, curry, bolognese, etc., mince up some liver and add. And, of course, just as a meal like liver and onions. I think I've read you shouldn't go over 200g a week because of the high vitamin A content.

Harebell profile image
Harebell

Is a Reverse T3 problem likely? Would getting a full thyroid panel, including reverse T3, done privately help make sense of my situation, do you think?

(And many thanks for all your helpful replies, they're much appreciated :-) )

Lmcg30 profile image
Lmcg30

Do you know the ranges for these results? Ideally tsh should be below 1. Ft4 in the middle of range and ft3 in the upper quarter of range

Gillybabe48 profile image
Gillybabe48

I had similar results and reluctantly dropped dose as 0.03 is verging on hyperactive and t4 high end. But how do you feel.

Harebell profile image
Harebell in reply to Gillybabe48

Thank you Gillybabe. Were you just on thyroxine? And did you feel better as a result of dropping dosage?

I don't feel well, but I don't think I'm feeling hyperactive. I'm getting a Genova panel done privately soon, so hope that will provide more answers. I must check up on how to prepare for it - like stopping medication and / or fasting.

Gillybabe48 profile image
Gillybabe48 in reply to Harebell

Yes no more racing heartbeat aching or feeling a bit irritable and feeling unusually hot. I am just on levothyroxine.

Harebell profile image
Harebell in reply to Gillybabe48

Okay, that's good. I have been hyperactive a while ago, and that manifested as racing heartbeat and insomnia, mainly. I've not got racing heartbeat this time though, but I do have insomnia and I am over-heating more often, but I was putting both of those down to menopause, possibly. All so tricky to work out.

Gillybabe48 profile image
Gillybabe48 in reply to Harebell

Well I would drop 25mg and see how you feel. Take doctors advice. Nothing bad will happe if you drop 25 mg. All the best.

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