MediAlert bracelet for private T3 anybody?

[inthedoldrums]

A post by Rapunzel mentioned someone who was left untreated with T3 in hospital as they were on a private prescription. It made me think on the idea of getting a MediAlert bracelet for the private T3 issue. I wondered if anyone does this already and am interested in opinions as to whether the hospitals could ethically ignore the information on the bracelet..

[RedApple Administrator]

That's a good question. I have a feeling though, that the problem is that hospital staff cannot take responsibility for providing/administering a patient with prescription medication that hasn't been prescribed by a medical professional.

[inthedoldrums in reply to RedApple]

Thanks for that, I think you may be right that it has to actually be on their system somewhere.

[helvella Administrator Thyroid UK]

What I'm just about to say doesn't answer your question (sorry ) but if you have a phone, I suggest you look at the options for storing SOS data.

I don't know how well hospital staff are trained in looking for such information, but if the information isn't there, even the most diligent staff won't be able to find it.

[inthedoldrums in reply to helvella]

Thanks that is a good idea.

[DippyDame]

I need high dose T3 to function, self sourced and self medicated. I very much doubt hospital staff would take the responsibility of giving me the daily c100mcg T3 I need, when the NHS were not prepared to prescribe it in the first place.....they just don't understand why I need it.

I'm fortunate in having good GPs who have listened to me and now accept my decision ( which legally I have the right to make) They cannot help....red tape ties their hands behind their backs.

I also doubt hospitals are ethically bound to administer T3 based on a non NHS decision. I imagine they would treat according to their own NHS tests/ investigations....they would be putting their jobs at risk otherwise

My GP once asked me what I would do without T3 if I had to be in hospital or in care. My answer was..."Probably die..., my body would eventually start to shut down as cellular T3 level dropped". She went silent and said nothing.....a new experience I imagine.

At best they might give me levothyroxine which after 20 years left me barely able to function....so not hopeful.

Then.... I found one or two knowledgeable members here who helped me research and find the answers that had eluded me for decades ....they very likely saved my life. They are my heros!

I have had a document, written by me, included in my medical notes explaining my T3 situation but I doubt that will hold any sway because it is not official.....and the responsibility to take T3 lies with me!

By all means wear a Medi-Alert bracelet or whatever you feel might draw attention to your use of T3. Perhaps if your dose is small someone might understand/ investigate....good luck.

In my case I guess it will be the beginning of the end, so I try to avoid doctors and hospitals if at all possible....and keep a plentiful supply of T3 to hand.

Since you asked, I offer this as my personal opinion, based on my own experience,

Current thyroid treatment, in some cases, is tantamount to medical neglect

[inthedoldrums in reply to DippyDame]

Thank you so much for taking the time. Your reply is very helpful as it all builds a bigger picture of what I could expect in hospital. Best wishes.

[Valerie0106]

This doesn’t answer every scenario or the thrust of your question, but I make sure I take my t3 with me and keep it in my bag. If I were more poorly I would task someone close to me to ensure I got it.

[inthedoldrums in reply to Valerie0106]

That is a good plan. I am quite new to this and grateful for your advice. Best wishes.

[Anthea55]

I take photos of my private prescriptions on my phone. When in hospital in January I was able to show them the photos and explain why I need T3. When I was discharged they gave me NHS prescriptions for T4 and T3 so that's now on my record. It did take me several days to get them to issue any levo, and then only the brand which was on the meds trolley.

Over the years I've had NHS and other treatments. I maintain what I call my 'Medical CV' listing my medical history as I see it. I hand it out to any medics I haven't seen before. It includes current meds and supplements. Useful so you don't have to remember answers to questions such as 'When did you have...'.

[inthedoldrums in reply to Anthea55]

Thanks for your reply. This also is good advice that i am grateful for.

[WildDeer]

I have been on T3 only for 13 years and it has made life worth living, In my area the Consultant Endo told GPs to take anyone on T3 off it. That prompted me to travel up country to seek help from one of the 'Outlying 10% ' , as he describes himself, Endocrinologists who understand the T3 situation. I saw him privately, and asked to switch to being an NHS patient as NHS doesn't deal with Private practitioners. I asked for it to be on my notes that I need T3 . However, the sharing of information between hospitals is parlous so I don't have much faith in that system. At least my family , should I be unconscious, can ring up the Endocrinologist and demand support. We are left feeling unsafe because such a mixture of vested interests.

[inthedoldrums in reply to WildDeer]

Thanks for replying. I agree with you. I am just starting to realise how perilous our situation can be as I have only been on T3 for a couple of months. Best wishes.

[Soloslim]

It's a concern of mine also. I'm not even on private prescription, I just self-treat with T3 I buy abroad. T3 isn't even a registered drug in my country, so I doubt that hospitals would ever administer that. No endo prescribes will ever prescribe it, although it is available on prescription just 10 km from my home, across the border!

I don't know how it is in the UK but here in Belgium a bracelet wouldn't do much good, I'm afraid.

[inthedoldrums in reply to Soloslim]

Gosh, I didn't realise it was so much more difficult in Belgium. I hope you manage to keep your supply and keep well. Thank you for replying.

[serenfach]

Last time I was in I gave them that green form that comes with your pills when you renew a prescription, so they knew the drugs and what I take.

What did I get? Nothing....

[sparkly in reply to serenfach]

This is a bit morbid I know. I now keep a copy of script in my motorcycle jacket so hopefully they have no excuse. God forbid if I turn up in an ambulance with no id

[inthedoldrums in reply to serenfach]

I think it's disgraceful that this can happen. I hope you keep well and thanks for your reply.

[Fluffysheep]

I have T3 on prescription (not enough, but not really the point of this post). I was in hospital for 10 days in December (emergency surgery). Every single Dr who came in went through my prescription and told me the hospital would be able to supply my T3. Only to come back a couple of hours later and tell me sorry, they couldn't. No reason given, but I suspect cost.

Fortunately, my husband came in every day, so he was able to bring my T3. They were quite happy that I took more than the amount on my prescription, they just couldn't supply even the prescription amount for me.

It was kept in the drawer by my bed (I couldn't really move much, so had to rely on them in the early morning drugs round). All was fine, apart from one nurse (who turned out to be agency) tried to give me levothyroxine, even though that wasn't on my list of medications, and liothyronine was stipulated, and it was passed over in the handover where it was kept.

I only knew because there less tablets than there should have been, and when I queried it the nurse told me there was a 50mcg tablet in there - obviously liothyronine doesn't come in 50mcg tablets.

I mentioned it to the next nurse on shift, and she went and got the matron and I had to explain what had happened so that she could report the nurse and make sure he wasn't sent by the agency again.

[inthedoldrums in reply to Fluffysheep]

Thank you for your reply. It is quite shocking that they wouldn't supply it even though you were prescribed it. I think it means that even if I wore a MediAlert bracelet, they would feel quite comfortable to ignore it. It was a good job that your husband was able to bring it in for you. It is interesting that the nurses were prepared to hand it out to you so not all hope is lost if we bring it in ourselves. Best wishes and I hope you keep well.