Like Schenks, my endo is suddenly back on the T... - Thyroid UK

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Like Schenks, my endo is suddenly back on the TSH trail...

Zephyrbear profile image
12 Replies

I went for my latest appointment with my endo on Wednesday and his reaction to my most recent blood results took me slightly by surprise. He spent all his time obsessing about how my TSH reading of < 0.05 mu/L (Lab range: 0.35-5.50) was dangerously low and that it could cause me cardiac problems, in the form of AF 10-12 years down the line... I have had this reading since 2010 and because he put me on T3 he has always previously agreed that the low reading was down to that factor... The other results were FT3b- 4.5 pmol/L (Lab range:3.5-6.5, which was down from last year's reading of 5.0 pmol/L) and the FT4 which was 6.5 pmol/L (Lab range: 11.0-23.0, again down on last year's of 6.6). Although I had taken my 25mcg T4 and midnight before my bloodtest, I had not taken my usual 15mcg T3 at 6am and the test was done at 9.30am due to a massive cock-up at my surgery over my arranged 8.45am appointment. I had to go to our local hospital (11miles away!) to have it done there...

He tried to persuade me to drop my 11.30am dose of 10 mcg T3 (I currently only take 35mcg/day in addition to 25mcg T4), which I refused to do citing my experience of there being a noticeable effect at around 2pm if I had forgotten to take that dose, at which stage he came out with that statement about the AF 10-12 years down the line, but backed off nonetheless. Instead, he agreed to make another appointment for 12 month's time... If anything, I was rather hoping that he might agree to an increase as my FT3b reading is quite a bit lower than it was last year and I'm finding myself putting on weight again accompanied by a decrease in energy.

Should I be worried? After reading Schenks' recent posts about her endo suddenly changing tack from being supportive and helpful to becoming obsessed about the TSH test again, I'm beginning to wonder whether there has been some form of pressure being exerted on these people to toe the official wholly discredited BTA/RCP line... Bad news all around, I think. :-(

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Zephyrbear
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12 Replies
Jazzw profile image
Jazzw

I'm wondering the same, as my OH's formerly supportive endo spouted the same nonsense. It has to have something to do with the cost of T3 in the UK, too. It shouldn't be so expensive - it cost pennies elsewhere - goodness knows why the NHS buyers don't challenge the price.

In the end, we shut up the endo by saying that without the T3 my OH would rarely get out of bed and that she'd rather take her chances with AF than spend the next 10 years bed-bound. But I don't think there is much of a risk of AF. My instinct is that hypothyroid people develop AF as a result of years of being undermedicated, not because they're now adequately treated with liothyronine.

Zephyrbear profile image
Zephyrbear in reply to Jazzw

I so agree!

PinkNinja profile image
PinkNinja in reply to Jazzw

Couldn't agree more!

Low TSH is a concern if the free t3 is high but when it is as low as this, there is certainly no concern from over replacement but perhaps a concern from under replacement.

My GP says that the reason he isn't allowed to prescribe t3 is cost. He is happy to manage me with my suppressed t3 and my private procurement of t3 as it has clearly made me so much better.

Heloise profile image
Heloise in reply to PinkNinja

Hi Carolyn, I'm so glad you are doing well with T3. Are you completely off your high dose of T4 now or do you take both?

PinkNinja profile image
PinkNinja in reply to Heloise

Thanks. I was taking 100mcg t3 only but added 25mcg of t4 for a bit of storage in case I got noro virus again (couldn't keep my tablets down for several days this year!). Unfortunately after a few weeks I have seen the return of symptoms, including severe joint pain, insomnia and fatigue. I have not taken it for two days and am feeling a little better. I clearly can't tolerate even small doses of t4. Even still, I am much better than a few years ago :)

Heloise profile image
Heloise in reply to PinkNinja

That's quite interesting. I've been posting videos by Dr. John Bergman on youtube, Carolyn. Whew, he doesn't like T4 at all.

You should check him out regarding thyroid and adrenals. He's excellent at teaching and his segments on the nervous system are outstanding.

Zephyrbear profile image
Zephyrbear in reply to Heloise

Is my post being hijacked by a private conversation???

Heloise profile image
Heloise in reply to Zephyrbear

Just sort of, kind of. It is on topic for people taking both T4 and T3. Carolyn's experience sounds like your own and might be helpful to you as well.

galathea profile image
galathea

So,I have had a supressed tsh for about 13 years due to taking t3 and later, NDT. Should I be or am I worried about AF? Hell no.... I am not all worried about it and it hasn't happened.

Scare stories..... Ask your doc for proof.... How the heck can he threaten you with something which might happen in the distant future ..... I would have stood there and laughed at him.

Xx. G

Zephyrbear profile image
Zephyrbear in reply to galathea

I turned around and told him flat that at the age of 60 already I wasn't really looking to make old bones, a thought which, quite frankly, terrifies me fartless! He didn't have an answer for that one! :-D

Glynisrose profile image
Glynisrose

Explain that being UNDER medicated causes worse problems and anyway taking thyroxine of any kind can supress the TSH. It has to be said that TSH is a pituitary hormone so why are they testing it instead of thyroid hormones? Your doctor is an ADVSOR only and it is down to how you feel NOT numbers!

Zephyrbear profile image
Zephyrbear in reply to Glynisrose

That's why I am treading my own path... I will decide how much T4/T3 to take to make me feel better and use him only to monitor my blood results. At least with the TSH reading being so low the lab automatically takes it further to test the FT3 and FT4.

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