Health board change - worry over T3 being taken... - Thyroid UK

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Health board change - worry over T3 being taken away

weezles profile image
20 Replies

Has anyone moved home to new health board area and not changed doctor (Scotland)? I have been on t4/t3 combination therapy for nearly a year. It has changed my life! I'm moving at the end of the month to an area where the health board are known not to issue t3 even when clinical need has been identified. Would it be crazy to not tell my doctor and just set up a mail redirect? Desperate times call for desperate measures!

Thanks.

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weezles profile image
weezles
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DippyDame profile image
DippyDame

Do you know about this?

scottishparliament.tv/meeti...

weezles profile image
weezles in reply to DippyDame

Thank you for the reply DippyDame. Yes I have been following this and at the most recent debate in Feb it is evident that some health boards are still denying t3 treatment, even when clinical need has been stated by endocrinologist. Three health boards were mentioned and unfortunately I am moving to one of them hence prompted my post.

I know not changing address would cause issues if I needed a home visit but have never required one yet. Wondering if I could just do a mail redirect to at least buy me some time.

marigold22 profile image
marigold22 in reply to weezles

I have done exactly that for nearly one year (I moved last March) I moved but didn't tell my GP surgery & put a mail redirect on my old address. Then I got very ill with stress & needed a GP; and although my old GP was only a half hour drive I couldn't do it. I've now had to change GP surgery & it has caused me a lot of anxiety. It's a very difficult decision. It depends how far away you are moving from your old address.

weezles profile image
weezles in reply to marigold22

Glad I'm not the only person to have thought of this. Thought it might be a totally mad idea! I will be moving around a 40 min drive but work 10 mins away. It's maybe something to do until forced to change for whatever reason. It would certainly buy me more time with guaranteed t3.

I hope you are feeling well soon x

marigold22 profile image
marigold22 in reply to weezles

I totally agree with many of the others. Don't rock the boat for at least 6 months, let Brexit sort out. GPs never do home visits anyway, and you can use 111 or 999. Stay with your current GP practice, at least you know you will get your T3 continued whilst there. Good luck

DippyDame profile image
DippyDame in reply to weezles

This extract, below, is from the Report of the Dec meeting

If you are denied T3 by a Health Board after having been prescribed it previously then write to Joe Fitzpatrick as he advised during the debate. You should not be put in the position of relying on subterfuge!

I self medicate so my position is different. I found by-passing the NHS was my only way to get the treatment I needed. However things in Scotland are changing and hopefully you will continue to receive the T3 you need.

"Miles Briggs: In the debate, the useful point

has been made that there is a postcode lottery

across Scotland. As Jackie Baillie suggested, will

the minister commit to writing to all health boards

to ensure that the guidance is being followed?

Joe FitzPatrick: I will come to that point.

I re-emphasise that the Scottish Government’s

position is that T3 can be prescribed by an

endocrinologist if it is considered to be the safest

and most effective course of treatment for an

individual. Elaine Smith and Jackie Baillie raised

that point—Elaine Smith asked whether I would

instruct health boards, and Jackie Baillie got to the

form of words that ministers need to use. I

absolutely will write to health boards to confirm

that patients who need access to T3 under an

endocrinologist can obtain it. That is important.

Jackie Baillie: I very much welcome the

minister’s confirmation, but will he monitor whether

boards pay attention to him?

Joe FitzPatrick: I suspect that, if boards are not

paying attention to me, many members will ensure

that I am aware of that. If people cannot access

the treatment that we all think and their

endocrinologist says that they should get, I ask

members to please write to me. We will chase that

up, because some of the stories and experiences "

weezles profile image
weezles in reply to DippyDame

Thank you for posting this. The letter has certainly been sent out however a clause has stated that the health board can make the decision.

scottishparliament.tv/meeti...

I realise that if I was refused then I could write to him but there are no guarantees that it would then be reinstated. I really don't want to take the risk.

DippyDame profile image
DippyDame in reply to weezles

Just when it looks as if things might improve the rug gets pulled from under your feet!

Perhaps a good idea to bide your time.

Have you considered taking control and buying some T3....as you will know, many of us do this....at least until things are more settled for you. That way you would avoid the worry of having no T3.

It's a scandal of monumental proportions that patients should find themselves in this position.

Good luck.

weezles profile image
weezles in reply to DippyDame

I will certainly look to buying some before I tell gp but it seems a scary thought of getting them from abroad.

DippyDame profile image
DippyDame in reply to weezles

You get very brave when you realise taking control of your health is the only effective option! You are already brave though....you go climbing!

Pleased to see what a difference T3 has made

weezles profile image
weezles in reply to DippyDame

I did a little research on buying t3 abroad and then funnily enough this morning a Facebook update told me a friend is travelling to Turkey. Sent him a message so hopefully he'll come home with a couple of wee packs of Tiromel for me 😀

MaisieGray profile image
MaisieGray in reply to weezles

I can't speak for Scotland, but home visits from Drs are rarer than hen's teeth in England, so it's not much of a risk or loss. I think if you are otherwise well, or at least, OK, I'd certainly do what ever you need subterfuge-wise, whilst you sort things out. You could always call 111 in case of a particular problem arising. Desperate times etc. I speak from personal experience of having had my T3 withdrawn in 2017, and no matter what we are told that they can't or shouldn't withdraw it or refuse to prescribe it, it is most certainly happening for many of us. I'm not clear what you'd achieve by redirecting your mail though, unless your Dr writes to you; but depending on the distance you are moving, can you simply not continue having your prescription sent electronically to your existing pharmacy, and just collect it when dispensed, as normal? Alternatively, perhaps you could have it sent to a pharmacy anywhere that posts your meds to you, and ask that mailing pharmacy for it to be sent temporarily to another address (eg your new one) because for the next few months you are going to be spending time whilst your house is renovated, or whilst you care for a sick relative or whatever. Your GP will not know about, or be involved in that arrangement, so will be none the wiser.

weezles profile image
weezles in reply to MaisieGray

Thank you for your reply. I'm sorry you had your t3 taken away 🙁

I would redirect my mail as I have actually had a few letters from my doc, and would want to still receive reminders for smears etc. Getting prescriptions/meds etc wouldn't be too much of an issue as don't work too far away.

Yep I think mind is made up. Going to do it ☺️

I think in your position, I would redirect my mail for now. There are bound to be medication issues around Brexit, and even if they do not relate to T3, the whole system is likely to be under extra pressure. In 6 months or so we may have a better idea how things stand.

weezles profile image
weezles in reply to

I never even thought of Brexit 😭

Are you required to move doctors when you move to a new area in the UK?

marigold22 profile image
marigold22 in reply to

Yes

weezles profile image
weezles in reply to

Unfortunately yes

M33R4 profile image
M33R4

You say it's changed your life. May I ask how it has please? I have no life at the moment 😩

weezles profile image
weezles in reply to M33R4

Within a couple of days I could think clearly which was very bizarre as I didn't realise it had been so bad for so long. I'm now more efficient at work and more confident driving on busy motorways as I finally have my wits about me. I no longer needing to collapse on sofa as soon as I get in from work. No more rapid drops in blood sugar or the ensuing dizziness, presumably because not as much strain on the adrenals. I am now running and climbing regularly although it was tricky building up and seeing what I could/couldn't do. I feel I didn't have much of a life before t3.

I hope you manage to find something that will help improve things for you x

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