No T3 blood test

[SusanAR]

Hello again!

Got my blood tests back from Thursday.

TSH <0.010 (0.2 - 4.5)

FT4 12 (9-21)

FT3 not checked

I am on 100mcg thyroxine and 20mcg liothyronine.

The doctor phoned me back. I asked why T3 wasn’t checked. She said she had never heard of anyone having T3 checked. So I said that because I am taking T3 surely it’s just common sense to check that it is working and I am on the right dose.

She said that the consultant asked for thyroid checks and didn’t specify T3. She also said that my TSH indicates that I’m on too much T3 and in her opinion I need to reduce it.

So I said that without actually checking the levels she can’t make any assumptions.

I then asked how to contact my consultant to ask his advice. She said she would do that but I’d really like to do it myself. I’m so sick and tired of talking to clueless GPs who put me in a bad mood!!

Does anyone know the best way to go about contacting a consultant. My next appointment with him isn’t until April.

Thanks very much.

[SeasideSusie Remembering]

SusanAR

If you know his name, then contact his secretary in the first instance.

All my letters from hospital, when they've come from a consultant, has the secretary's name and often their email address, and a phone number.

I find it very puzzling why they think it's OK to put you on T3 but not check your FT3 levels, I often wonder how far back in the queue they were when common sense was given out. But then again, when they took their exams, someone had to come bottom!

[SusanAR in reply to SeasideSusie]

Thank you. I only have letters from the appointments desk so maybe I should just call the switchboard and ask?

It’s the waste of time that’s annoying too. These people should be banned from even talking to thyroid patients! Maybe they covered Thyroids one afternoon that she was on holiday!

[shaws in reply to SusanAR]

I think they're directed to only look at the TSH result. If it is low the assumption is that we are overmedicated and will promptly reduce dose.

[SusanAR in reply to shaws]

Thank you for your reply. That would be true if he hadn’t read me the letter he wrote to my GP explaining to them that he doesn’t care if my TSH is suppressed because he wants my other levels in the right place. He actually quoted Dr Toft in saying that my TSH needs to be suppressed to get my T3 and T4 where they should be.

Maybe they lost that letter 😂.

[shaws in reply to SusanAR]

Either lost or ignored. Dr Toft has reiterated that few doctors are knowledgeable.

healthunlocked.com/thyroidu...

[SusanAR in reply to shaws]

Haha, you’re right - probably ignored.

Thanks so much for that link. Looks like very interesting reading.

[SusanAR in reply to shaws]

It has always seemed counterintuitive to continue to treat patients with a prohormone (LT4) alone when the thyroid gland secretes both the active (T3) and inactive hormones.

I like that bit - especially as I don’t have a thyroid.

I’m going to print it out and highlight.

Thanks again!

[shaws in reply to SusanAR]

I have my gland and needed T3 to improve. I was even worse on T4 than before my diagnosis (I diagnosed myself - eventually after misdiagnosis and even an op).The fact that the NHS has withdrawn T3 a few months ago due to the cost rising by 6,000%. No wonder the 'supplier' has now changed their name. I wonder if they've reduced the cost to the NHS. In Turkey and in Greece instead of about £600 for T3 (IUK) it is under £2. per 30 tablets. Members on this forum seem to be the ones who cannot recover on levothyroxine and despite quite a number of researchers/scientists proving that a combination of T3/T4 can improve symptoms and health the 'authorities' refuse to acknowledge this and insist you take levo even if it make one worse.

[SusanAR in reply to shaws]

It’s absolutely awful. It’s been proven to work so they should be searching for ways to get it from somewhere at a lower cost. It would be money well spent.

My mum picked me up 100 X 100mcg levo (for emergencies) in Spain at the weekend for €4.50. She went in and asked and they just asked what strength she wanted!

[Hidden in reply to SusanAR]

No prescription?

[SusanAR in reply to Hidden]

No just over the counter 😀. I read on here that you can buy it so asked her to try and there was no problem. The only question she was asked was what dose.

[Peanut31]

Hi

“She also said that my TSH indicates I’m on too much T3”

What an idiot, considering they haven’t tested your T3.

I wouldn’t listen to a single thing that comes out of her mouth.

Best Wishes

Peanut31

[SusanAR in reply to Peanut31]

Thank you, that made me laugh! I was thinking exactly the same. I definitely won’t be asking for an appointment with that one again!

[MissGrace]

OMG, she’s ‘never heard of anyone getting T3 checked’ but she knows (perhaps by osmosis) you’re on too much and need to reduce. Every time I come on this site someone raises the bar on reported levels of GP ignorance and incompetence. You have to laugh or you would never stop crying. Doesn’t she see the paradoxical nature of what she has said? And if she wants to hear of someone getting T3 checked - tell her about me. I get it checked every blood test. And on the NHS. What a t**t!

[SusanAR in reply to MissGrace]

😂😂 Thank you. Good to know I’m not alone!

I don’t know why I’m surprised any more. I’m written my consultant an email and I’m going to stop allowing my GP to do anything related to my thyroid (or lack of a thyroid which they keep refusing to acknowledge).

[shaws in reply to SusanAR]

People who have no thyroid gland at all need to have doctors/endocrinologists who are aware of how a person can feel when on an insufficient dose. Nothing in our body works effectively when not on a dose which is optimum for us as individuals.

[SusanAR in reply to shaws]

My endo is great. At my first appointment, when looking at my test results he actually started shouting “for goodness sake, are any of these people aware of the fact that you don’t have a thyroid”. My first thought was that I’ve found someone who understands!

[shaws in reply to SusanAR]

Your Endocrinologist sounds good which is great to have confidence. It has always puzzled me that those who've had their thyroid gland removed only get prescribed levo - and that's because I have my gland and couldn't improve. I

[blondpalomino]

Hi,

The only time I got my T3 checked was at the Hospital when I saw the Endo. My doctor requested it to be checked a few months later, but the Lab wouldn't do it!

[SusanAR in reply to blondpalomino]

Thank you.

Mine won’t even request it as there’s no need when we can just ‘assume’ the level.

May as well spin a wheel and just pick the number it lands on! 😂

[blondpalomino in reply to SusanAR]

Well, mine had to, as she asked me to change from T4/T3 combination to just T4 for a trial, due to the exorbitant cost of T3.

I agreed (to keep her on side),on the condition that I could go back on the T3 if I felt worse, which surprise surprise I did.

She then had no option but to put me back on the T3. When I saw her afterwards, she said they hadn't done the T3 test,but didn't make any other comment. It didn't worry me as long as I got the T3 back!

[SusanAR in reply to blondpalomino]

That’s great you got it back again. I feel so much better on it. And I’m loving my eyebrows 😂