Myxedema coma recovery

[tgroszart4_n]

Anyone else been here?

[Gerispice]

You poor thing. How on earth did you get to that stage? Your doctors are useless!

[GosportNancy]

I was treated for Myxedema coma in March this year. I have been home since April 1st but am having to buy my meds on-line as my GP practice refuses to prescribe it (although the hospital doctor did)

[Hidden in reply to GosportNancy]

oh my goodness gosodportnancy... i was reading in depth myxedema coma... i think its a fear for all the people out there that arent being treated properly for their hypothyroidism... its definitely mine... hope ur ok now and on the mend....did u actually collapse or did a doc actually pick up on this... i do know you dont always go into a coma as in unconscious....x

[Hidden in reply to Hidden]

oh sorry for my spelling of your name... trying to type without glasses lol xxx

[GosportNancy in reply to Hidden]

I woke in ICU and a member of staff told me I had been in a coma (a flat out away with the fairies coma) for several days.My family filled in the gaps.

I collapsed at home and arrived at the hospital with multiple organ failure and low thyroid hormone levels. I was left in a corridor for 18 hours while they waited for a bed...then a few days on a medical ward went by and I had a cardiac arrest...woke up after 3 attempts of CPR and slipped into a coma..woke for a few minutes then conked out again until I came to in ICU.

The hospital staff treated the thyroid levels but nothing else. I am on the mend now that I am buying my own meds. I can only get T4 from the GP as that is all they test for

[Kitten1978 in reply to GosportNancy]

OMG!!! I'm so sorry you have been through this!!! And your GP still wouldn't prescribe??? That's shocking ;(

Take good care of yourself x

Kitten

[Musicmonkey in reply to GosportNancy]

GosportNancy Honestly I can't believe that you

1. suffered multiple organ failure

2. had a cardiac arrest

3. went into a coma

and that YOU ARE BUYING YOUR OWN MEDS!!

Actually, the sad thing is that I can believe it, but it is so NOT OK.

Surely, if anyone needs an accurate diagnosis and appropriate treatment it is you!

I thought there was something on the Thyroid UK site which invited anyone who didn't feel they were getting the right treatment to get some legal support, but I couldn't find it with a quick search.

If it was me (with such a serious situation) I would contact my local Healthwatch organisation:

healthwatch.co.uk/find-loca...

or The Patients' Association

patients-association.org.uk/

or the advocacy charity

pohwer.net/

or the Parliamentary Ombudsman

phsothefacts.com/

Sorry you have suffered like you have and I hope you have sufficient strength and support to get the treatment you need.

[DiNiro in reply to GosportNancy]

It is outrageous! In Norway, if a doctor at a Hospital gives a patient a prescription for a medicine, a GP normally doesn't refuse to follow up. We even have rights to go to court for bad treatment on medical issues. What is happening in the world when the best treatment isn't available because of idiot doctors? Is it Big Pharma who is their leaders?? 😡

[mistydog in reply to DiNiro]

It's a big part of it.

[GosportNancy]

I am getting tons of support (and laughs) on a couple of facebook groups for cardiac arrest survivors ....I am waiting for an endo appointment so I will ask about the t3 then

[Auntyp62]

I was in a myxoedema coma but that was 42 years ago and if we think doctors are ignorant now they were worse then. I was in hospital for 3 weeks, my GP later, who had missed my problem totally said people my age (early 20s) do not have thyroid problems. 20 years later in 1986 a hospital junior doctor took me off all thyroid meds saying as I did not have the antibodies I did not need medication. 2 months later I was admitted with a heartbeat of 36 and although not in a coma well on the way. I am sad to hear these things are still happening.

[JOLLYDOLLY in reply to Auntyp62]

It is incredible isn't? End of last year, I had a routine liver function test and the results came back high. Bearing in mind I had been on high doses of iron for the previous month for anaemia. Anyway, the upshot was my batty GP said that she was going to do more tests but asked if I drank alcohol for my liver count to be high! Did the tests again and she then came back to say, "You have been tested positive for antibodies, so you might have hepatitis" Hello, I have thyroid problems, I have been on a high course of iron, bit of a coincidence. The upshot was I stopped taken the iron for a while and my blood test came back normal! It is not rocket science - It comes to something when we know more than them! I am so pleased you didn't go into a coma but it is shocking that you had to become poorly because of a junior doctors mistake. I am surprised it was not checked by his senior. It makes me go cold when I hear what is going on. At the end of the day, these mistakes and misdiagnosis should not be happening, not in this day and age.

[JOLLYDOLLY]

I am sorry to hear what you have been through. I was in a coma as a baby. I was born with congenital hypothyroidism but they didn't find out until I was five weeks old. It was thanks to a Health Visitor who realised the problem and I was rushed into hospital, the rest is history. I am guessing that you were on the infamous Liothyronine T3 whilst in hospital? The GP will tell you that they are "Not licensed" but they are. The T3 is a big debate here, the powers that be, say it is too expensive so it is being discontinued in the UK - Even though there are many who are on it and need it, including myself. I do hope that you will see an Endo soon and that they are sympathetic. I have had to report my Endo. She told me that it causes the problems that it actually corrects. What are you taking at the moment, thyroxine? Take care

[tgroszart4_n]

Yepppp, How are you doing?