My wife is on T3 only. She usually takes 40mcg (20 am, 10 pm and 10 evening) but often adds an extra 10mcg or 20mcg depending on how she feels and the demands of the day. If she's ill, she usually needs more T3. Her GP knows all this.
Her big concern is if she has to be hospitalized due to CV19 because there's a risk that some doctor or nurse doesn't know about T3 only people. Hopefully the issue will never arise but if it does, how would I be able to make absolutely sure she gets her T3 medication, and the right dosage bearing in mind that she usually needs more when ill?
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If you are worried, I would get a "pack" ready, saying what medication she is on [dosage timings etc], what allergies she has etc etc.
I don't know if you find these things easy to talk about, and at the risk of being morbid, a charity has produced something that I think is quite useful, about what kind of treatment you would not want while in hospital with Covid19:
It will be down to you to make sure she is given it. My husband didn't get his T3 for 5 days after an op, I wasn't aware until day 4 and it took many phone calls to get it re prescribed by the ITU doctors, he again went 3 days without it later on when they couldn't source IV Liothyronine, I believe this contributed to his death.
How horrific, so sorry to hear that. I realise it will be down to me but the problem is, as you found out, is getting the message through and actually acted upon.
You have to be persistent, I spoke to his nurse, critical care sister, Pharmacist and ITU Consultant to make sure they understood the importance, it still took a further 24 hours before he was given any !
There was no excuse as he took a very detailed list plus all his meds in with him but it was 4 days before the pharmacy realised the T3 hadn't been dispensed.
Based on your experience I think it would be necessary to put something in black and white to senior people to the effect that the patient must receive their normal T3 dosage and that the hospital will be held culpable for failure to ensure this.
This is something that worries me somewhat, I have to self medicate with T3 the GP and endo know this but refuse to prescribe it on the NHS. I'm not sure quite where we ( who self medicate ) would stand if we were admitted to hospital.
You probably wouldn't be given any T3, even when it's prescribed by GP or Endo the hospital doctor still has to re prescribe it so the pharmacy can dispense it.
I've just re-read all the responses to your post. I've been on T3 only for 9 years, helped by Dr Peatfield to transfer from T4 , which made my quality of life increasingly poor through 16 years on it with Hashimotos. I have met with the disrespect and hostility of Consultants and GPs who frame my decision as a neurotic lifestyle choice. When I have let them know how much my quality of life has been improved. Not perfect, but so much better.
I now have the backing of an NHS Consultant Endocrinologist who is monitoring me, from another area. My GP has come round a bit and will now meet my eye, having the pressure taken off her I suppose. It has taken all the maturity I possess to stay polite and hold my position through years of this.
Since reading these posts about what might happen to us if we get Covid19 , I'm feeling
unsafe again, since noone seems sure what our rights are. Is It really about the disposition of the individual Intensive Care Consultant? Is there any protocol about this?
My Consultant is backing my use of T3 , but on the basis I buy it online. I would not anyway wish to ask the NHS to pay the obscene amount of our money they are presently agreeing
to pay. My local CCG has a hardline attitude unfortunately.
I guess hospitals would have to have a small supply of powdered liothyronine in case of a rare case of Myxodaema ?
To have to bear the worry of getting Covid19 is one thing. It's appalling to have to fear our chances of survival being undermined by not receiving our normal T3 treatment.
My thoughts exactly when I first posted. I was hoping someone would be able to give us some sort of assurance but none has been forthcoming despite the vast wealth of knowledge provided by the members of this forum. This is a serious concern, so much so I doubt whether my wife (who also went onto T3 following a consultation with Dr P) would even agree to risking going into hospital if she became infected.
Here is the advice of a doctor friend of my daughter, who works in a hospital:
I think it all rests on whether it is in the in-patient formulary for the hospital in question. The inpatient formulary is bigger than the outpatient one. So just because the ccg takes a hardline approach on the outpatient side does not mean that this is reflected re inpatient meds.
If she was admitted with COVID at that point everything would be focused on short term survival and in particular supporting the heart, lungs and kidneys. The aim is to always continue the meds from the community. But if that is not possible they will substitute. Maybe something to ask her endocrinologist as he will know the specifics of the in-patient formulary.
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