I survived

[joydot]

last 18 months have been crazy. So sick. gp/ endo nearly killed me. Full blown myxedema coma most of past 6.5 yrs. By some luck, after 6.5 yrs of of startlingly bad medical care I only just found a good GP surgery, they are slowly piecing me back together on T3. Lotta sleeping & serious despair that this was even possible. not having anything more to do with mr malpractice & currently training doc on reality so sw England will have one competent thyroid connection. At this point need name of an endo who understands T3 & NDT. As long as my GP can phone or email it’s enough. Will anyone recommend?

In 3ish months I’ve gone from 250lb to 170ish - my body looks like an old balloon & my poor face has stretch marks. Unbelievable. Breast cancer treatment was a holiday compared to hashis in cornwall. I wouldn’t wish it on anyone. Hopefully my legal case will make healthcare professionals pay attention. We deserve much better than this.

#NDT. #T3. #recommendation

[Lalatoot]

Gosh I thought my treatment was bad but leaving you in a coma.......not often I am speechless.

[joydot in reply to Lalatoot]

that was part of the problem - myxedema coma you usually aren’t comatose. I didn’t realise - you’re more walking dead.

[Thyrigia in reply to joydot]

Hello Joydot very sorry to learn you have had such a rough time but body is remarkable and can heal and recover. Best help I can think of is go see Dr who is homeopathic doctor. He's in Winchester and couple of other places. He can prescribe NDT. He was recommended to me via both Thyroid UK and a helpful person on this chat line called . Am so grateful as have been consulting him for about five/six years now. Taking NDT I dropped five stone without changing my generally healthy lifestyle. Up until then I could never shift more than half a pound a week which came back the following week. Also rediscovered that person I was used to prior to poor thyroid treatment. When will usual UK medical practice wake up to thyroid disease? Far as I can make out nothing has changed since 1960s when artificial thyroxine displaced the previous treatment using Dessicated thyroxine that had successfully managed thyroid disease for over one hundred years. By the way. Most endocrinologists nowadays advocate synthetic levothyroxine following the usual practice in this country. All good wishes to you for your return to good health. Thyrigia

[helvella in reply to Thyrigia]

Our guidelines do not allow doctors names to be posted.

It is OK to ask "Is Doctor A worth seeing?" - but replies must be by private message.

For that reason I have edited your reply to remove doctor names.

[lau99]

So sorry to hear that you went through something so, so awful...I'm relieved to hear that you're on the mend now. I hope your legal case makes waves as well.

[Delilahmy]

Sorry to hear your story… nightmare… I have been hypo for approx 35 years and too ended up with myxedema…. I can totally relate I felt like the walking dead… could barely string a sentence together and walked like I was drunk … my GP was asking whether I was drinking …. Testing took a year at doctors and not even looking in the right place. My Dad took me to see an endo … them my hypo journey began …

[joydot in reply to Delilahmy]

it’s unbelievable. I’m glad you finally have something good happening.

[Batty1]

How did they manage to make you so sick and what actually got you properly diagnosed? Curious

[joydot in reply to Batty1]

withholding what I’ve been on for 19 yrs. and refusing to treat extreme anaemia at same time (thyroid brought it on). What they did is covered under torture legislation. That is my ultimate goal. My first gp & 2nd last here are in my sights. That should get them paying attention.

[tattybogle]

Curious joydot .. why did you stop taking any thyroid meds (T3 only ?)for 4 months leading up to Jan 2022

Was the T3 not working for you any longer , or were you just unable to source it / had prescription stopped ?

What have you been taking since then ?

Since you were previously ok on NDT before you moved to UK ... were you unable to source that once in UK?

NHS GP/ endo's are not usually allowed to prescribe NDT to 'new' patients on NHS.. due to CCG limitations ....( theoretically, some GP's may agree to prescribe it by private prescription at their own risk, but that's rare)... most members on here who take NDT either have a private prescription from private endo , or buy their own NDT without prescription .

[joydot in reply to tattybogle]

both gp & endo declared me uncritical. Absolutely no reason to have done so- crazy in fact. was frantic but couldn’t get traction anywhere. Then when I finally got script it was for less than half required (was off my head & didnt realise)

[joydot in reply to tattybogle]

wasn’t on t3 before - NDT had always been fine. In Germany a horrible doctor put me on Levo/t3 instead but it didn’t work & new doc (more functional medicine type) whipped me back on NDT immediately.

[chrisbuy63]

Well done you are on the way up now! As for the loose flesh look up autophagy benefits, there are youtube videos about it and a good one is on Dr Eric Berg channel but you must discuss with your doc as he seems to be really willing to help you on your road to complete recovery from such a terrible ordeal.

[joydot in reply to chrisbuy63]

I’m feeling a bit traumatised at the moment. I came here with everything in terms of history etc & yet every step medical professionals have been defiant & refused to follow protocol - even set by nhs itself. I’ve been so sick. And they didn’t care.

[tattybogle in reply to joydot]

are you now getting T3 prescribed regularly on the NHS in Cornwall ,joydot ?

or are you paying for private prescriptions / self funding the T3.

members on the forum who have experience with getting NHS to prescribe T3 will be able to help better if you give more information about what CCG / ICB area you are in and whether you have NHS or private treatment.

(different CCG/ ICB areas have different protocols for prescribing T3 on the NHS .

and NDT prescribing is even more tricky on the NHS.... nowadays it's virtually impossible for 'new' patients, because in most areas , NHS guidelines do not allow NDT for new patients)

Most NDT prescribing is usually private nowadays ,There are some rare patients getting NHS NDT prescriptions , but only if it has already been prescribed to them by the NHS for a long time already)

To get more helpful support from members, it's useful to give current dose & latest blood results.

[joydot in reply to tattybogle]

miraculously t3 on nhs.

NDT was always private, sometimes could have pushed but wasn’t expensive /couldn’t be bothered. I kept taking same as long as possible - in nz from compounding pharmacy, then europe from Munich pharmacy. While here thanks to this forum was on Thai govt NDT for 12-14 months, was great until supply shut down & I ordered Thai pink pill version that was fake. Then it really fell apart, however sick I was getting Covid drama was priority 1 😬

[pennyannie in reply to joydot]

NIKEGIRL

[joydot in reply to chrisbuy63]

ive been using bio oil on my face & neck but seems overly optimistic!

[Imaaan]

My heart goes out to you. I hope you find someone that will treat you with dignity and is willing to collaborate with you on how best to tackle your health.

[joydot]

Thanks - it’s been a wild ride. In nhs I don’t expect dignity, best you can hope for is competence & even that is thin on the ground 🤨