Devon Thyroid Group!

[JaneChapple]

Hiya

For anyone who might have missed this. Here is the link for my Devon Thyroid Group. I also take from Somerset and Cornwall borders.

facebook.com/groups/1035323...

Best wishes

Janexx😎

[Marz]

I'm there !

[Devonlad]

Hi Jane, I'm not sure how this all works, but on a conversation on the TUK forum a couple of days ago about my thyroid meds/levels, Pennyannie mentioned your name as running a local group, which I'm interested in joining. Unfortunately I don't really do Facebook (but I am prepared to give it a go). is there any other way? Please excuse me if this isn't the right way of contacting you

My history is, I live in West Devon, near Tavistock. I had a thyroidectomy in September 2021 following papillary cancer (found by chance and with no symptoms and clear lymph nodes) and have been on Levo 150mg until Sept 2022 when I dropped to 137.5mg as I wasn't good on 150mg. I've been under Nuclear Medicine in Derriford since my op even though I declined RAI as I suffer from dry mouth/low saliva as RAI can apparently affect saliva glands. I'm still not right on my meds though my 'new' consultant says all is OK (the previous one left to go to London which was a pity as he was really good).

I'm still not right in my meds, low energy, various aches etc and am considering going private as I'm not convinced I'm in the right place with Nuclear medicine. I have the TUK list of consultants, but there appears to be no one in Plymouth. Have you any suggestions? I have heard of a Dr. at Nuffield who is an Endo, (I do have a name, but not sure I should mention it) any ideas?

Sorry if this is a bit long and I'll look forward to hearing from you.

[JaneChapple in reply to Devonlad]

Hi Devonlad

Sorry only just seen this and sorry to hear a out your health issues.

It would probably be best if you joined FB. Id prefer a forum but they are not that easy to set up. I am happy for you to email me if you get really stuck. You can just use the FB page for my site and nothing else. Im not keen on it either tbh. If you set up an account you can message me personally. There are 203 members now and some very knowledgeable ones I have to say! There are also several men on the group, so you will not be alone by any means.

I cannot for the life of me understand why Nuclear Medicine deal with thyroid patients once they have operated on people. I usedto work at RD&E as a part time medical secretary (latterly bank staff) but retired just before xovid hit. Id have thought Nuclear Medicine would know even less than most endos?!

There is a private endo called Parg Singhal who works from Weston SuperMare, Taunton, Bristol. Im under him and have been fighting to get T3 only and presently under NHS. I have also been under him privately He also does video call. He has at long last agreed to take me on for T3 only but there will be further battles since my surgery are simply not interested and Devon ICB (previously Devon CCG together withExeter endocrinologists will only allow 10mcg max - a long story!

Just put his name on the net and he will come up.

Here is my email [e-mail].

Hope this helps.

Best wishes

Janexxx😣😎❤