Can anyone make sense of these blood results?

[GP46]

I have been hypothyroid for 4 years, and until now have been happy on a stable dose of 75mg levothyroxine and 20mg liothyronine.

In March of this year, I suffered an awful episode of severe hyperthyroid symptoms and had to temporarily stop all thyroid meds.

Seven months later, and I still cannot get back on the meds. Every time I take levothyroxine or liothyronine, the hyper symptoms come back.

When I first stopped the meds, my T3 dropped like a stone to 1.9 (3.1 - 6.8).

Since then, my TSH has risen sky high (as you might expect).

However my T3 has also risen to 4.5 and so is now within range, with NO MEDS.

TSH is 56 and so docs are adamant that I need to take something.

Where can the T3 be coming from? Does this explain why I am suffering hyper symptoms whenever I take either levo or liothyronine?

And why is TSH 56, when my T3 is in range?

Any ideas at this stage would be hugely appreciated as this is leaving me more or less housebound now. Every day is a battle 😢

[Jaydee1507 Administrator]

Have you managed to start supplementing your folate and iron?

Which brands of Levo have you tried?

Did you do a blood test before you stopped your Levo & T3 earlier this year?

You may have some thyroid function left, hence managing an FT3 of 4.5 but obviously it isn't enough.

[SlowDragon Administrator]

Essential to test vitamin D, folate, B12 and ferritin

Have you done this yet?

Vitamin levels likely dire now

Did you actually try taking just 1/4 tablet 25mcg levothyroxine four times a day initially

Then slowly build up dose over coming months

[GP46]

Recent bloods:

Vitamin D - 85 (>50)

Vitamin B12 - >2000 (180-900)

Folate - 12 (>3)

Ferritin - 58 (15-300)

I've tried MercuryPharma, Teva and Wockhardt brands of the Levo.

Blood tests when I stopped the meds were:

TSH <0.01 (0.27-4.2)

T4 13.5 (11-25)

T3 10.4 (3.1-6.8)

At a T3 of 10.4, I was suffering constant atrial fibrillations so was recommended to stop the meds for a week and bring that level down quickly.

It plummeted to 1.9 in 7 days.

Now, it's back to 4.5 without meds and I am not getting much in the way of hypo symptoms but my TSH is 56 and I am desperate to avoid going totally hypo (I have been there 4 years ago and I know how bad it can get).

I have tried taking just 1/4 of 25mg levothyroxine a day, and after 3 weeks of that all hyper symptoms were returning.

Baffling me!

[Jaydee1507 Administrator in reply to GP46]

There's liquid Levo that you could try although its expensive and GP might refuse on cost grounds. If you can get it then you could try very small amounts and increase very gradually.

FT3 will plummet fast as its not stored, its only really immediate use.

Do you have any other health conditions? On any other meds? What symptoms do you get?

[SlowDragon Administrator in reply to GP46]

I have tried taking just 1/4 of 25mg levothyroxine a day, and after 3 weeks of that all hyper symptoms were returning.

Well that’s not surprising

So increase 1/4 tablet to twice a day

After week or so ….increase to 3 x per day ….and again increase to 4 x 1/4 tablet

Wait 6 weeks and retest

Assuming your results show you are hypothyroid (highly likely)

Then slowly increase again by another 1/4 tablet etc

Until up to 50mcg daily …..wait 6 weeks …..Retest

Repeat slowly increasing dose levothyroxine until back on full replacement dose

Approximately how much do you weigh in kilo?

[GP46]

The symptoms I am getting are:

Tinnitus, high blood pressure, fast heart rate, fast bowel movements, cold sweats, insomnia.

This all settles down when I don’t take any meds.

It all returns as soon as I take the meds.

[Brightness14 in reply to GP46]

Adrenals maybe sound like it.

[GP46 in reply to Brightness14]

I have had a synacthen test.

Saw quite a big rise in cortisol after the injection. Well over the threshold for a reaction in normal range.

I actually felt dreadful for about 2 days after the test though, so not sure if that means anything.

[Brightness14 in reply to GP46]

Perhaps your adrenals need a little help.

[GP46]

I did ask my GP about liquid Levo. Point blank refused, but I would happily pay for it if that is an option.

Would be grateful if anyone would message me if there are details available of where I could source it.

I don’t have any other health conditions or medication to take.

[Jaydee1507 Administrator in reply to GP46]

I believe liquid levo is a few hundred pounds a bottle, also not really available without a prescription.

Roseway Pharmacy offer a prescribing service and compounded meds.

These are all symptoms that I suffered when I stopped meds having randomly gone hyper. It later transpired that I have histamine intolerance, so thats something that you could try, although not easy is a low histamine diet.

[Lovecake in reply to Jaydee1507]

I could have got liquid levo from Roseway via my private endo. They may do it direct. The price was too high for me to afford and my GP said that unless I tried it successfully for at least 6 months they wouldn’t even consider prescribing it. Too much of a risk, I just can’t afford it.

[Jaydee1507 Administrator in reply to Lovecake]

There are alternative options via compounding that Roseway offer a service for. This would work out cheaper than liquid Levo.

[Lovecake in reply to Jaydee1507]

Yes. I get T3 (Thybon) from them. I’m very sensitive to changes in tablets, so not going to change at present as I look after my grandson twice a week and can’t chance days/weeks of reactions.

[GP46]

I have cut out gluten already, and not seeing any difference from that, although not gone full low histamine.

Do you think the histamine intolerance had any bearing on getting back on to thyroid meds?

[Jaydee1507 Administrator in reply to GP46]

I can't tell you 100% if it did or didn't but I strongly suspect that it did. Histamine affects neurotransmitters.

It is a difficult diet to follow and all food has to be very fresh, especially any meat.

histaminintoleranz.ch/downl...

mastzellaktivierung.info/do...

[helvella Administrator]

I think you (and, more importantly, your doctor) need to be asking whether there is any interference with the lab tests.

There are, for example, several types of antibody which can affect test results - have a look at my blog page:

helvella - Factors that interfere with thyroid tests

A summary of factors known to interfere with thyroid tests.

helvella.blogspot.com/p/hel...