Lets do a petition

[marigold22]

Hi again everyone, you have served me well on this site over the last couple of years since I discovered you. I’ve asked a few questions & got lots of helpful replies.

In 2014 I found a Prof endo at QE Birmingham; he was the best endo I had ever seen. He managed to get my T3 dose correct with a bit of prompting from me. Also get me off the cortisone 1mg a month which had been prescribed by a well known private doc. Sadly the Prof endo left January 2015 to do diabetes research in Oxford. By July 2015 I had appointment with another endo at same hospital following a short synacthen test & was told I was ‘cured’ and officially signed off. I do feel really well. In the end it was simple – unable to convert any T4, needed T3 only; the cortisone was simply supporting me as I was sub clinically hypo.

So now after 35 years of having the classic hypo symptoms , along the way losing my marriage, my home, unable to work, I am as close to my old self as I will get considering I’m now 64

I’m on the verge of going to see top medical negligence lawyer to sue the NHS, BUT having read old postings & replies here, it’s become clear that the GPs particularly are between a rock & a hard place. Is it the GMC and/or NICE that put the rules in place, for blood test ranges, not to prescribe T3, etc ?

With that in mind, it would be those bodies to sue and not the NHS as a whole.

An alternative is to start an online petition to draw the problems we hypo’s have to MP’s attention. Any views please?

[MaryF]

There have been so many petitions past, present etc, it is getting people to sign and indeed recruit for other signatures, or sometimes somebody will start a petition and then not bother to promote it. I think people get petition fatigue, Thyroid UK did one not that long ago. I always sign decent petitions and always pass them on: MaryF

[Lizzy1606]

Maybe we should do a poll on this site and find out how many members would like to be seen to be heard to make a change .There have been quite a few good petitions but its seems like MPS are not interested in listening .Maybe we should target the Endo who are members of the BTA and the BES .Maybe even protest outside the hospitals they work in, all on the same day up and down the UK.

I am begining to feel that we won't get change unless we get out there and be seen.Anybody else feel the same.I will be honest i would do nearly any think for thyroid nightmare to be over.

[Clutter]

Marigold22, UK guidelines for the management of primary hypothyroidism are drawn up by the British Thyroid Association and endorsed by the Association for Clinical Biochemistry and Laboratory Medicine, British Thyroid Foundation, Royal College of Physicians and the Society for Endocrinology. The guidelines are closely aligned to those recommended by the European Thyroid Association and American Thyroid Association.

The UK guidelines permit clinicians to treat with T3 on an individual patient basis.

I don't think a medical negligence claim can be successfully brought against clinicians following guidelines or the experts who devised the guidelines.

Despite having more than 30,000 forum members ThyroidUK struggled to get 10,000+ signatures on their petition and 100,000 is required to be eligible for MPs to debate.

[galathea in reply to Clutter]

Theyre not proper NICE guidelines though.... Nice have a defined method of drawing up guideIines, whereby they consult with many different groups to get a balanced view.....

In fact, officially, there are No gudelines in the uk and a doctor is free to do more or less as he pleases so long as it gets his patient well.

The best bet at the moment would seem to be the Scottish petition which calls for better diagnosis and treatment. This is ongoing and the Scottish parliament have been helpful so far. Once the treatment is changed in Scotland, we should have more teeth to call for changes in England and Wales.

Xx g

[thyr01d]

Yes Marigold 22, I think your idea is excellent and I'd be glad to sign. One request though, please could it be worded respectfully so we keep the medical profession 'on side' as it were?

[Glynisrose]

I am very surprised you found an adequate 'professor' at the QE! I ruled out all of them when I was refused any sort of response to the thyroid problem! I was told by a 'professor' there was nothing they could do for me and I would have to suffer the symptoms! I told him he was a disgrace and should not be practising let alone teaching others!

[marigold22 in reply to Glynisrose]

Hi Glynisrose, I saw a Prof endo at Selly Oak about 10 years ago (Prof S) who dismissed me. However after an absolute fiasco - me overdosing on cortisone by mistake when I needed to increase my T3, ending up at Russells Hall Hosp. where the endo was totally negligent, I then got to see Prof T at QE. As I said, he's moved on to research diabetes of all things. I wouldnt know who to recommend at the QE now though. It's all very sad and frustrating. Best wishes

[Beverleyb]

I think it's a good idea for another petition. On the last petition we had I could only get a few people to sign, not many are agreeable to give out private information online, if only we could actually have paper signatures, I would gladly stand in streets asking for signatures,and I know I would get many more signatures.

[marigold22 in reply to Beverleyb]

Thanks for your offer Beverleyb, I had thought the 'general public' would be less likely to sign & it would need folk who know about the problems we hypo's have.

[Beverleyb in reply to marigold22]

I understand what you are saying marigold22, but the people I come across who have thyroid problems but have no help. I went to loan a book on hypothyroidism from my local library and I ended up giving a librarian advice, a pharmacist was going to research after I had spoken to him, and as I posted last week 4 out of the 12 people I spent Christmas Day with were all hypothyroid, ( related by marriage) and having problems. It's so frustrating!!