My GP is confused: As am I. Hello, I hope you're... - Thyroid UK

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My GP is confused

Kitty1watson profile image
21 Replies

As am I.

Hello, I hope you're all well.

After years of feeling awful and ignored, I had a blood test last week, after a 6 week trial of 30mcg T3 combined with 150mg T4.

My results were as follows:

TSH - suppressed (0.03, I think).

T4 - 7.0 (12.0-22.0)

T3 - 3.3 (I can't remember the range but it was around mid-range, something like 2.5-4.5)

I didn't take my medication prior to the test and I had it at 8.30am without eating first.

Does anyone know what this could indicate? My GP is at a loss and he thinks the endo is also not sure, but has referred me back anyway.

Last year I bought myself Thyrogold and took it for a couple of months on top of 10mg T3 and 150mg T4. I lost 6kg, and felt better generally. That ran out and it's out of stock. I gained all the weight back within 3 weeks and felt dreadful.

Since the trial of 30mcg T3 I've lost 2kg but that's plateaued and I feel pretty much the same.

I am not sure what to talk to the endo about to try and get the appropriate help.

Thanks so much for any ideas.

(NB I tried to search this topic but the results were all unrelated!)

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21 Replies
greygoose profile image
greygoose

So, how long was the gap between the last dose of T4, and the last dose of T3, and the blood draw?

Those results are suggesting you aren't absorbing it very well. How do you take your hormone? On an empty stomach, well away from food/supplements/other medication?

Kitty1watson profile image
Kitty1watson in reply to greygoose

I took it in the morning the day before and yes, first thing in the morning, about 2 hours before I eat. I take it and then take my son to school and eat when I get back. I put the T3 under my tongue instead of swallowing it, but I swallow the T4.

greygoose profile image
greygoose in reply to Kitty1watson

Well, that's not a very good way to take T3. It's not meant to be taken sublingually. It is designed to be swallowed, because it needs stomach acid to free it from the sodium molecule it is attached too. Plus, the T3 molecule is too large to cross the muscus-blood barrier. So, that's probably why you're not absorbing it very well.

Kitty1watson profile image
Kitty1watson in reply to greygoose

But my T3 levels are in range and it's the T4 which is well under.

greygoose profile image
greygoose in reply to Kitty1watson

Your T4 is low because you are taking T3.

Just being 'in range' is not always good enough. Mid-range is rarely high enough for hypos. Yes, you are absorbing some of it, but given the size of your dose, one would expect your FT3 to be higher. So, a lot of it is not getting absorbed.

Quite amazing the number of doctors that don't know what to expect when someone takes T3: the TSH becomes suppressed and the FT4 drops low - especially when taking a high dose like 30 mcg. There's no mystery, it's just that your GP and endo are both very ignorant. :)

Evej13 profile image
Evej13 in reply to greygoose

Hi greygoose Can you tell me why t4 drops when taking t3 please? Does t4 drop more if you take more t3? Or is it if you take any t3? References if possible. Thank you!

greygoose profile image
greygoose in reply to Evej13

I'm afraid I can't tell you that. Nobody really seems to know. Someone asked that the other day and diogenes replied. He thought that it was because more T4 was converted to rT3 when taking T3, but he didn't seem to be really sure.

healthunlocked.com/thyroidu...

It will drop if you take any amount of T3. But whether or not it drops further if you increase T3, I couldn't say. So many unknowns where thyroid is concerned! :)

Evej13 profile image
Evej13 in reply to greygoose

Thanks @greygoose. I'd sure like to know! Yes.... too many unknowns :(

greygoose profile image
greygoose in reply to Evej13

You're welcome. :)

Kitty1watson profile image
Kitty1watson in reply to greygoose

Thank you, it feels so hopeless, if the specialist has no idea! 😭

greygoose profile image
greygoose in reply to Kitty1watson

The specialist of any disease is the patient that suffers from it. Can't remember who first said that, but I think Dr P quoted it.

We have to learn about our own disease and take charge. Doctors just aren't interested in thyroid. That is a fact. They learn next to nothing about it in med school; rarely come across it when interning in hospitals; and don't believe it's important enough to read up on in their own time. So, we have to do it ourselves.

Kitty1watson profile image
Kitty1watson in reply to greygoose

Absolutely. It's only through hours and hours of research that I was able to present the case for T3 in the first place and I think they're getting really fed up with me, keep presenting them with medical articles. 😬 But my research doesn't help if their minds are closed.

radd profile image
radd

Kitty1watson

I agree with greygoose re the swallowing of T3.

If you saw weight loss with the addition of T3 it was doing something but not enough for full wellbeing. Try swallowing T3 coz if taking it sublingually was the issue, you will notice improvements very quickly. Some members need to split their doses into two or three a day to reduce rapidity of onset and prolong the duration of its action.

Also are your iron and nutrients definitively all optimal?

A suppressed TSH is fine with the addition of T3. You have written your other results as T4 & T3. Did you mean FT4 & FT3?

T4 levels can drop with the addition of T3 but (whether T4 or FT4) yours are too low to make sense of where all that medicated T4 has gone. Are you medicating away from calcium and iron? Are you perimenopausal or taking HRT? Even eating high fibre foods before full absorption will shunt it through too quickly. Otherwise it has to be bound to something unless the test is wrong. Did you stop any biotin supplements a week beforehand as this risks altering results for T4, T3 and TSH.

SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you currently taking

Do you always get same brand

T3 needs to be swallowed. Not sublingual

Also many people need to split T3 into 2 or 3 smaller doses through day. 3 x 10mcg at equal 8 hour intervals

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s?

What vitamin supplements are you currently taking

Ask GP to test vitamin levels (and thyroid antibodies if not been tested)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

If/when also on T3, make sure to take last third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

If you left 24 hours for T3 the result is false low

Kitty1watson profile image
Kitty1watson in reply to SlowDragon

Hello, thank you, everyone. My doctor believes I have issues absorbing medication through my stomach. They recently tested my vitamins, and, whilst my B12 was in range, it was low, despite taking prescribed tablets every day. I saw a marked improvement in taking T3 sublingually vs swallowing.

I've been in T4 only for years and absolutely nothing changed. I even tried out taking double the dose and honest to god, nothing happened. GP said I might not be absorbing B12 well enough and will need revert to injections. They were stopped because of covid.

My T3 result was mid range, whilst my T4, taken by swallowing, was well below. The GP has increased me back up to 175mcg T4, which I think is pointless, give that it's never done anything.

SlowDragon profile image
SlowDragonAdministrator in reply to Kitty1watson

Most of udon levothyroxine plus T3 need both Ft4 And Ft3 at least 60% through range

So I would agree with GP you probably need dose increase in levothyroxine

Are you on dairy free diet

Poor absorption often linked to both gluten intolerance and dairy intolerance

Which brand of levothyroxine are you currently taking

Do you always get same brand

If dairy intolerant you need lactose free levothyroxine tablets or liquid

You might need liquid levothyroxine, often better absorbed

Endocrinologist can prescribe liquid levothyroxine

B12 injections should not have been stopped due to Covid

Essential to regularly retest vitamin D, folate and ferritin

When were these last tested

Personally I only feel well with both Ft4 and Ft3 at good levels.

Taking T3 at 3 doses spread through the day at roughly 8 hour intervals may be more effective

7am, 3pm and 11pm approx

Suggest you retest TSH, Ft4 and Ft3 after 6-8 weeks taking T3 by swallowing and as divided dose. Last 10mcg approx 12 hours before test

Last dose levothyroxine 24 hours before test

Test as early as possible in morning before eating or drinking anything other than water

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Kitty1watson profile image
Kitty1watson in reply to SlowDragon

So, actually, then, my T3 is good, taken sublingually, as I had left 24 hours? It was in range, middling, but if it was falsely low, it would have been higher had I taken the small dose beforehand. It was the T4 which was low (which has longer half life and should be in my system, if it's correct that it should be swallowed). It was very under range. The lowest I've been before is 11.0.

It's all so confusing but I'm very grateful for you all taking the time to give me your thoughts.

Kitty1watson profile image
Kitty1watson in reply to SlowDragon

Thank you, I take a generic, I believe, it just says Levothyroxine. I feel like everything is a battle with the GP and endocrinologist. I can imagine their faces if I ask for a different named brand.

I didn't know there was a liquid form. That's interesting. I will cut dairy again. I don't get any overt symptoms and I only have cheese once in a while (I have almond milk now, no dairy milk) but I can cut it out.

SlowDragon profile image
SlowDragonAdministrator

Reading previous posts, you’re severely gluten intolerant, so almost certainly cause of your hypothyroidism is autoimmune thyroid disease

Essential to test vitamin D, folate, ferritin and B12 annually

Are you still on regular B12 injections

What vitamin supplements are you currently taking?

On gluten free diet we are frequently low in magnesium

Kitty1watson profile image
Kitty1watson in reply to SlowDragon

Thank you, my injections were stopped and I was given tablets but GP has said it's common not to be able to absorb B12 through the stomach. If my levels drop next time, I'm using my stores, apparently, so will have to have injections again.

I have recently added magnesium and selenium, so, fingers crossed! 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Kitty1watson

Sublingual B12 tablets, designed to be absorbed under the tongue, often work better than tablets you swallow

Eg Jarrow B12 tablets

amazon.co.uk/Jarrow-Methylc...

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