What can be done if Drs refuse Armour and reduce T3? (If anything)

[annca1]

Hello,

I am new on this site.

I was diagnosed by the wonderful Dr Peatfield with secondary hypothyroidism many years ago..

I am on Armour Thyroid 3gr, or at least I was until I was told, by letter this week, that the surgery would no longer prescribe it. Instead, they have issued a script for T4 50mcg. I was also on T3 twice a day. That has been cut back to 20mcg a day. This has been my regime for many years.

Unfortunately I can't take T4, or I would have been taking it already. I tried it right at the start and it made the palpitations and chest pains going into my arm worse, making me even more ill. I have asked for a referral to an endocrinologist, although my experience is with them has been mixed, but I have been ignored. Oh, I have been told that if I want to continue on Armour, I will have to find a private endo to prescribe it. Not great advice when my only income is my state pension.

It seems to me that as some people can't take T4, and if now denied the alternative, either doctors are unaware or uncaring of the consequences. And dereliction of duty. We are supposed to be participants in our own health care decisions, but in my case and others, that is not happening.

Sorry for the length of this. I would appreciate any advice.

[SlowDragon Administrator]

Email Thyroid UK for list of recommend thyroid specialist endocrinologists. Some on list will prescribe NDT, usually Armour or Efra.

Roughly where in the U.K. are you

Increasingly difficult to get NDT prescription on NHS

[e-mail]

[annca1 in reply to SlowDragon]

Thank you for this. I'm in Devon.

[TaraJR in reply to annca1]

Devon is notorious for only allowing a maximum of 20mcg T3 daily. A ridiculous practice - what would happen if diabetics were only given half or a third of the insulin they needed?

If you're on Facebook, please join ITT Improve Thyroid Treatment Group. We have various template letters to help patients when fighting/writing to CCGs, endos, PALS, MPs etc.

[annca1 in reply to TaraJR]

Will do! Thanks for this, it is really helpful. I will use your comment too, ref diabetes treatment, when I try to have this decision reversed. Worth thinking about the number of meds available for diabetes and other conditions, too, by comparison. As thyroid problems affect mainly women, and so many struggle to be listened to, or to access appropriate treatment, perhaps this is a Human Rights issue, too.

[SlowDragon Administrator]

Might be worth trying adding levothyroxine

Making sure vitamin D, folate, ferritin and B12 levels are at good levels BEFORE starting levothyroxine

When were vitamin levels last tested

What vitamin supplements are you currently taking

Many people find different brands are not interchangeable. Teva brand in particular upsets many people, but for some people it’s by far the best (it’s lactose free)

Are you lactose intolerant?

[annca1 in reply to SlowDragon]

Thank you for your comments and advice.

I take lots of different supplements for numerous conditions, including selenium, vit D, C E and the Bs and herbs.

I am not sure what my levels are, are some are not tested. I think the last ferritin was raised.

I am very anxious about trying T4, but I may have to. Perhaps trying a reduced amount might make things clear.

I don't have a lactose problem, at least in small amounts.

Thank you again. It is most appreciated.

[SlowDragon Administrator in reply to annca1]

Many people who find levothyroxine tablets difficult to tolerate do well on liquid levothyroxine

So that’s another option to consider (not cheap so they don’t like to offer it)

healthunlocked.com/thyroidu...

In some patients, better control of thyroid function may be achieved with oral solution forms of levothyroxine than with tablets

[annca1 in reply to SlowDragon]

That's helpful. Thanks very much!

[Gigi216 in reply to annca1]

I’ll add that I get chest pains and pain in left arm when I try synthroid. Pitted edema in legs and feet also. I’m not certain but I think it could be lowering my B1 because I have had issues with low thiamine in the past. I get dizzy with large doses of thiamine so I haven’t been able to take as much as I want to, I’m having to work my way up. Good luck maybe that’s causing your chest pain

[annca1 in reply to Gigi216]

Thanks very much for your comments. Sorry, I didn't explain it well. Since being on Armour and T3 in correct dose, the palpitations, and chest pains stopped. But, I need to ensure that they do not come back. Regarding thiamine, I take a preparation called benfotiamine 150mg, primarily to help with glucose metabolism as I am diabetic, too, with my other vit B preparations and myriad supplements. So it is interesting about the B1 link. Hope you get sorted, too.

[Gigi216 in reply to annca1]

Ah ok! Well I’m glad they resolve on correct dose, obviously synthroid does not agree with me at all. I don’t have chest pains or leg swelling unless I take it so I don’t. Benfotiamine is a good supplement I take it sometimes too. Take care!