T3 prescribing

[carolinegodlonton]

My endo and gp have decided to remove my prescription for Liothyronine and want me to be on levo only. I'm in Cumbria. May I have the list of T3 doctors or endos that might prescribe lio on the NHS, if there even is such a thing. I can buy my own but my supply is reliant on someone else bringing it to me once a year. Many thanks

[Anthea55]

I'm sure that I've seen that they can't change your medication without your agreement.

Someone else will know more about this.

[DippyDame in reply to Anthea55]

This perhaps Anthea.

"Patient Autonomy"

carolinegodlonton

My endo and gp have decided to remove my prescription

This should have been a joint decision following a medic/patient discussion!

Too often the patient's point of view is ignored/ overruled....they forget the law of Patient Autonomy!

If T3 works for you ( compared to other treatments) then ask them to justify that decision. Only you can express how you feel, you know your body better than anyone else, and they must give that cognisance.

What the law says...

An adult patient who… suffers from no mental incapacity has an absolute right to choose whether to consent to medical treatment… This right of choice is not limited to decisions which others might regard as sensible. It exists notwithstanding that the reasons for making the choice are rational, irrational, unknown or even non-existent.

Lord Donaldson. Re T (Adult) [1992] 4 All ER 649.

bma.org.uk/advice-and-suppo...

[Anthea55 in reply to DippyDame]

Thanks DippyDame. I knew I'd seen it.

Most of us don't realise that they have to listen to us.

[DippyDame in reply to Anthea55]

It was a GP who pointed this out to me when I was having a discussion ( a friendly rant even!) about the fact that I have to self medicate with high dose T3...which is the only thing that allows me to function.

Sometimes it's not ignorance that prevents them from helping, it's the "rules" laid down for them by those at the top who seem to be more concerned with financial and political will than with patient care. Consequently, medics may have their hands tied behind their backs....and fear losing their regustration if they deviate from the guidelines.

However, arrogance and ignorance on the part of medics, as is evidenced in our amazing forum, also play a part in shocking patient care and outcomes!

We need to speak out ...and be heard!

[carolinegodlonton in reply to Anthea55]

Well, I'm not finished with them yet, I've only just started. Strangely if you need to communicate with them, there's no email address only snail mail. I don't have a printer so I'll have to go in search. I want all this on my file so there's no arguments later.

[SlowDragon Administrator]

Post 5 Months ago you were on NDT plus T3 - self sourced

healthunlocked.com/thyroidu...

Then the NHS agreed to prescribe

What were results on 100mcg levothyroxine and 20mcg T3

Why have they rescinded the offer to treat you

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

Are your vitamin levels optimal

[carolinegodlonton in reply to SlowDragon]

As far as I can see the gp prescribed the T3 for a while, while referring me to the endo. When the endo saw my suppressed tsh she suggested I drop the Ndt and replace with levo, which I did. When this did not change my TSH at all, she dropped my levo to 75mcg and also wanted to reduce the T3 but I refused. Her letter back to the gp said I should stay on the t3 20mcg but she didn't prescribed it. The gp just decided to drop it and when I asked why they said they weren't allowed to. So neither will prescribe it even though it was recommended. So now I'm back to square one. I'm going to fight back and I having upcoming appointments with both the gp and endo.

In answer to your question about levels, my t3 came down to 5.3 and t4 is 14. I feel great on this combo now but neither of them asked how I was feeling, just had a fit about the suppressed tsh!

[SlowDragon Administrator in reply to carolinegodlonton]

Ludicrous isn’t it

Many (probably most?) people on any T3 will have very low or suppressed TSH

When did you last test vitamin D, folate, B12 and ferritin levels

Ft4 might be a bit low? Assuming Ft4 range is 12- 22

[Anthea55 in reply to SlowDragon]

Can I refer you to the Thyroid UK website and further reading. Here you can read about the "7 Myths of Hypothyroidism"

thyroiduk.org/further-readi...

One of these is "The myth that a suppressed TSH leads to Osteoporosis", and this is what out of date doctors are still thinking. Many of us have had a suppressed TSH for years.

And that's why money is needed to fund research.

[carolinegodlonton in reply to Anthea55]

Thank for this link, what an interesting article x

[carolinegodlonton in reply to SlowDragon]

I haven't tested vitamins for about a year but am supplementing daily for all except iron, which when last tested was fine. Think I will test in the new year just to check. My levo was lowered to 75mcg even though my t4 was 14 (12-22) . She gave me a choice. Less t3 or less t4 and of course I said less t4 and that's why it's is going down. I have quite a few 100mcg tablets left so am going to increase it again. She said she's going to eventually get me off t3 all together and on to only levothyroxine. I really don't want to take that chance. I started a new, lovely job in November after leaving my previous one due to cortisol issues and no energy . I would love it if that works, but it didn't 6 years ago so I'm a bit dubious.

[SlowDragon Administrator in reply to carolinegodlonton]

She said she's going to eventually get me off t3 all together and on to only levothyroxine.

suggest you definitely need different endocrinologist…..she’s not interested in your health…..only her career prospects

I have quite a few 100mcg tablets left so am going to increase it again.

Either test now while only on 75mcg

Or put dose levothyroxine up to 100mcg and wait 6-8 weeks before retesting

[SlowDragon Administrator]

Is your hypothyroidism autoimmune

Have you tested BOTH TPO and TG antibodies

Are you on strictly gluten free or dairy free diet

What’s the highest dose Levo alone you were on when you started……BEFORE looking at adding NDT

[carolinegodlonton in reply to SlowDragon]

Yes it autoimmune. Looking after my digestion has been a life changer with regards to the antibodies. I have flares when I eat the wrong things ie gluten. I eat mostly a high protein and good fats diet including dairy. My story briefly: After my 2nd child in 1988 I never seemed to recover my energy and my figure. Puffy and tired, depressed and brain fogged.

I muddled through on anti depressants and detox diets, trying to find a solution. Thyroid never checked. In 2008 I started going hyper and lost 20 pounds, was tired and wired but dr didnt have clue, put me on 2 anti depressants and sleeping tablets. Blamed it on peri menopause and stress! She said my adrenals were exhausted and my thyroid should burn itself out and only then could she do something about it! Told her my mother and sister had radioactive iodine treatment for theirs.

My hormone dr gave me hrt and thyroid s the following year. I felt a bit better but never retested so stopped and started for a few years.

I emigrated to the UK in 2016 sick as a dog. That's when I started reading and learning everything thyroid. I got diagnosed and given levo 50mcg . No better so 100mcg. Even on that my t3 was below range. So I self sourced thyroid s and started that. My levels improved and maybe I should have taken more ie 3 grains.

I self sourced Liothyronine and started that slowly and started feeling normal for the first time in years. Id forgotten what normal felt like!

I tested all my vitamins and iron and all were bottom of the range and ferritin was too high. All sorted now.

So here I am with the latest dilemma about sourcing T3. I was over stimulated when I went to the endo, first one ever. I could have fixed that myself had I realised. I was just trying to get my lio on the NHS , cheaper and easier for me, but it seems they're not interested.

Think I'm going to ditch that idea and keep on with my current dosage as I'm feeling great except to put the levo back up too 100mcg. With lowering the dose I have body pain and sleep issues again. I'm still on lowest dose hrt as well.

Thanks for reading x