Frustrated!

[Molly161018]

I have been on an increased dose of thyroxine, as I complained to my GP of ongoing/worsening symptoms. Turned out my T4 had dropped so they increased it quite willingly. However, my initial conversation with him was regarding T3 meds, and he wanted to try increasing T4 and lowering my TSH before considering referring me to an endo etc etc...

So my blood test results from August were as follows:

TSH - 1.71 (0.55-4.78)

T4 - 11.5 (10-20)

T3 - 4.1 (3.5-6.5)

And this past week I've had a follow up blood test and they didn't test T3!! Not helpful!

TSH - 0.12 (0.55-4.78)

T4 - 18 (10-20)

I asked the lady that phoned why a T3 test wasn't done and she said the lab would reject it if one had been done in the last 12 months (I don't believe this as I've had two in the last few months anyway!) She wanted to reduce my dose as my T4 was up the top end and TSH was below their "normal range" (which she says can cause heart problems in time...?) but I said that I'm still not feeling great and no way was I risking going back to how I was a couple of months ago...

She then agreed that I could stay on my current dose and review in 8 weeks - and this time she'd request for a T3 test again.

But that's another 8 weeks away!!! I'm just desperate to try T3 and hopefully feel better! What can I do? I'm willing to get a private test done but will my GP take any notice of this?? Or do I get a private test done, get advice on this forum and try self medicating?!

I just feel like I'm being strung along...and even if I finally get referred to an endo, will they let me try T3, and how long will it take to be referred on the NHS??

Any advice out there please?

Thanks in advance!

[greygoose]

TSH - 1.71 (0.55-4.78)

T4 - 11.5 (10-20)

T3 - 4.1 (3.5-6.5)

Those numbers don't actually suggest a conversion problem. Your FT4 was 15% through the range and your FT3 was 20%. Your TSH is a tad high, and your FT4 very low, but increasing the FT4 to the top of the range could make your conversion worse.

If, however, your conversion rate stays the same, your FT3 will now be right up the top of the range, suggesting that lack of T3 is not really your problem. And, adding more T3 isn't the solution.

If you feel you can't wait, do private tests now. Your doctor may or may not accept them, but at least you will know.

[Molly161018 in reply to greygoose]

Thanks greygoose

I can see why you are saying that...but I'm beginning to wonder if those results were a bit skewed, as I have always had low T3 previously:

Jun 17: T4 - 17.75; T3 - 4.18

Jul 18: T4 - 18.7; T3 - 3.47

Apr 19: T4 - not tested; T3 - 3.6

These definitely suggest conversion issues don't they?

I think I will get a private test done as I haven't had a comprehensive one done for over a year and it would be good to get the full picture with vitamins etc too. At least I will know where I need to go from here without waiting around another 8 weeks...

Thanks again for your advice

[greygoose in reply to Molly161018]

If they're the same ranges, then yes, they do. Good idea to get private testing, Get the results all in one place.

[SlowDragon Administrator]

It's rare to get FT3 tested by NHS these days

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

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

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 . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Is this how you did the last test?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Molly161018 in reply to SlowDragon]

Thanks slowdragon!

Yes my last test was in line with this guidance - my previous one in August which seems to be a bit odd was fasting and no thyroxine for 24 hours, but was quite late in the morning (11:00 ish) as I had to wait at a walk in clinic...could this have influenced the results?

My previous tests were fasting but I can't remember if I took my meds or not!

I'm looking at medichecks now - they seem to be reasonably priced...but I'll wait til next Thursday to order it anyway!! Thanks for the tip! Will be in touch...