Urgency for meds: Hi, I am really concerned as to... - Thyroid UK

Thyroid UK

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Urgency for meds

Bridgette68 profile image
Bridgette68

Hi, I am really concerned as to where to go from here!!! Can anyone please help.

I have been on thyroid meds for about 15 yrs. I origionally started on Levothyroxine and was on it for about 12 yrs and over that time my bloods never balanced nor did I ever feel that good. So I asked to try something else. No Dr or Endo that I have seen has ever offered me anything else as apparently there isn't anything here in the UK other than the synthetic form. I over the yrs started getting lumps round my neck and my Doc and Endo said I was having a bad reaction on them. So with a lot of heated discussion my endo said I could try Armour but I would have to go through my Doc for the Prescriptions. Well that was for about 6 moths on the NHS and them they refused to let me have any more and if I wanted to continue I had to pay for the meds which worked out about £150 for 3 months Armour. I was on a 3 grain tablet that seemed to work and made me feel much better. But recently due to the high combination i was advised to drop a little to 2 grains and have been on that for 2 months. The recent issue I now have as I moved and though my existing surgery was still local I was told I had to change surgery. I have spent the last 3 weeks trying to sort out a new GP and get my notes moves over, but my new GP now tells me that as I was under a specialist they wouldn't honour the meds I had to go back to my Endo. My Endo is telling me he too doesn't like the Armour tablet and never advised me to take it even though there is no alternative offered.!!!! I was given some notes to say that ARMOUR isn't to be prescribed by local GP's. Arggggghhhhhh !!!!!!

With the bad reaction from the Levo tablets I really don't want to back onto those but fear I don't have an option but to and go back down hill with them.

I was also told by my Endo that over the yrs of not getting the right dose or the right Hormone replacement to help my thyroid it has dried up and not there any more.

So I have less than 2 weeks of tablets left and and not in a desperate state of where to go next. I really can't afford the high costs of seeing someone privately and the waiting game of starting all over again is worrying me.

Can anyone please help me in where to go or what I can now do??? I've less than a week now to get something sorted!!!

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3 Replies
shaws profile image
shawsAdministrator

Most on this forum have had similar responses to levothyroxine. We used to get prescribed NDT or T3 but due to the cost of T3 rising so high (About £600 + per month) they withdrew it. The Organisations, I believe, have wanted to also withdraw NDT for the few who were prescribed. NDT was the only thyroid hormone prescribed throughout the world since 1892 and before that we died a horrible death but the fact that the Authorities have the cheek to withdraw either NDT or T3 which relieved distressing clinical symptoms.

Those who source NDT and there are several will send you a private message as it isn't permitted on the open forum. There are various prices but at least your GP should have prescribed until you are able to source an alternative. For me, levothyro xine was a disaster and there is a group of people who also don't improve but do so on either NDT or T3 added to T4 or T3 only but the Authorities have also withdrawn it.

Thyroiduk.org.uk have a Petition going forward to Parliament. If you email TUK explaining what happened to you.: email

lyn.mynott@thyroiduk.org

thyroiduk.org.uk/tuk/campai...

I will close your post for comments on the forum but you will be sent private messages of where to source from members who do so.

Numberone1 profile image
Numberone1 in reply to shaws

Can I interrupt this message and also ask anyone listening what I might do also.

I am running out ofT3 and my gp prescribe won’t prescribe even though my endo has said I mustn’t take Levo.

I’m now having a nightmare scenario because I have found out that I have to have open heart surgery for a congenital condition I didn’t know I had.

I have been consumed by that as you can imagine and cannot start taking thyroxine again in this situation.

Can anyone help me? Advice?

shaws profile image
shawsAdministrator in reply to Numberone1

Members will respond and I would tell the GP that you will take this matter up with your MP and also report him for denying you a life-saving hormone until at least you have had your very necessary operation. They should not withdraw without a reasonable time in order to seek other sources.

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