Review appointment at Endo clinic. Results. Advice please.

[Mickeydooley]

I recently had a phone appointment with an endo at the local hospital where I’ve been on a T4/T3 trial for over a year now. I explained to the endo that I wasn’t feeling well. Hair and eyebrows falling out, exhausted all the time and falling asleep in the afternoon/evening and sore joints and muscles if I do any activity. She sent me for bloods which I did according to advice here. (9am appointment/fasted/levo 24 hours and t3 12 hours prior to blood draw). This was 3 weeks ago. I hadn’t heard anything from the clinic so I phoned this afternoon to see if my results were back. They are as follows:

TSH 0.02

FT4 12.4 (12-22)

FT3 4.2 (3.1-6.8)

That means my FT4 is only 4% through range and FT3 is just under 30% through range as far as I can make out. The endo has written to my gp to say that my meds should remain unchanged and that I will be reviewed in four months. I’m furious! Why do they even bother speaking to people? Sorry for the rant but I wondered if anyone could advise please? Am I being unreasonable in expecting a raise in dose? I’ve written an email to the lead endo at the hospital but want to check first that I’m right to be annoyed. Thanks.

[SlowDragon Administrator]

Was this on 75mcg levothyroxine and 20mcg T3 (as divided does?)

Suggest you try 25mcg increase in levothyroxine. This should also increase Ft3 result

Retest Thyroid (and ideally Vitamins) 6-8 weeks later

[Mickeydooley in reply to SlowDragon]

Yes I took 10mcg t3 12 hours prior to bloods and 75mcg levo 24 hours before. I had increased my levo to 100mcg on alternate days in the past (Without consulting endo) but my T3 went just over range so I dropped back again to 75mcg each day plus the 20mcg t3. Perhaps I should just take 100 one day a week.? My tft levels have never been so low. No wonder my hair and eyebrows are falling out! I had my vitamins tested in May and all were good (I posted here and was told that they were good) apart from ferritin which was high.

[Mickeydooley in reply to Mickeydooley]

Oops! I just looked again at a previous post where I added my vitamin levels and you had suggested that my folate was a bit low. I actually bought the supplements you advised but never took them as I was waiting to do bloods. I’ll take them tomorrow after breakfast. Wonder why if vitamins are so essential for us that endos don’t check them? Sometimes I wonder if they know anything at all! 😡

[SlowDragon Administrator in reply to Mickeydooley]

Well they are supposed to test for deficiencies of folate, b12, vitamin D and ferritin ....but NHS won’t prescribe if they are low, but within range

Down to you, as an individual to improve to optimal levels

NHS England Liothyronine guidelines July 2019

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

[Mickeydooley in reply to SlowDragon]

Thanks. I do a medichecks ultravit twice a year to keep an eye on vitamins

[greygoose]

I had increased my levo to 100mcg on alternate days in the past (Without consulting endo) but my T3 went just over range so I dropped back again to 75mcg each day plus the 20mcg t3.

Do you have Hashi's? Because it seems highly unlikely that with just a 12.5 mcg increase in levo daily that your FT3 would go from well under mid-range to over-range. You would have to have super conversion for that to happen - and then some! So, either there was interferrence of some kind with the test, or you had a Hashi's swing.

[Mickeydooley in reply to greygoose]

I have over range TGAb. 380 or thereabouts last time I tested. Always about 400 (<115). I was very surprised myself when my t3 went over range when it had only been about 62% (if memory serves me right). My T4 was roughly 32% so I thought a slight increase in levo might bring both up. My conversion was never great hence the t3 trial.

[greygoose in reply to Mickeydooley]

Exactly, I didn't think your conversion was that good, or you wouldn't be taking T3. So, I don't think that high FT3 had anything to do with your dose of levo, I think it was the Hashi's causing the rise. You might want to try increasing the levo again, see what happens.

[Mickeydooley in reply to greygoose]

I’ve sent an email to the lead endo at the clinic to ask him to contact me. The last endo (5 different ones now in 6 appointments, all with different views on what my treatment should be and dosing me by my TSH) has written to the gp to tell him my dose should remain the same so I won’t get extra levo on my script.

[greygoose in reply to Mickeydooley]

You could buy your own. Write a new post, asking people to PM you their trusted links. There's no reason to allow people who know less than you do about you, control your life by withholding life-giving medication. It's just not right.

[Mickeydooley in reply to greygoose]

Thanks greygoose. I’ll see what the endo says and if he doesn’t help I’ll definitely do that. X

[greygoose in reply to Mickeydooley]

You're welcome.