Update on today's Bristol Support Group meeting!

[Clarebear]

Hi - I just wanted to say thanks very much to everyone who came along today (from near and far) - I counted 16 people - what a great turnout - it was really good to see you all

Thanks very much also to Paul Robinson who came along today and answered all of our questions on T3, CT3M and adrenals. We all really appreciated your time and input Paul

And thanks of course to Sally who set up the group, chairs the meeting and provides the great venue

Hope to see you all next time on Friday 1st Feb and then on Friday 1st March (both at the cafe in Knowle West Health Park). I am also hoping to organise an additional meeting on the morning of Saturday 16th of March at my house (for everyone, but so that people who find it difficult to make a weekday meeting due to work etc can come too.) - more details to follow soon.

Some of the stories we heard today were so upsetting but also so inspiring. What an amazing group of people.

Thanks,

Clare

[Hidden]

So glad you had a good meeting, Clare. None of the dates have worked out for me lately but I look forward to seeing you all again as soon as poss. I wonder if it would be worth inviting someone from the Bristol Hospital Endo Dept to a meeting so that they could see life at the coal face so to speak! I seem to recall that they are more receptive there than some.

Jane x

[Clarebear in reply to Hidden]

Thanks Jane I feel so lucky to be feeling better and to have got it all sorted in 2 years. Some of the people there today have been ill for 25 year Most seem to be doing better now on T3 or NDT

It would be lovely to see you again at another one of our meetings. I'd love to get NaamiSue to come back for some more yoga.

I must say I would be rather nervous about getting an endo along but will give it some thought xx

[Hidden]

I wish I lived in Bristol, Clarebear. sounds like a great meeting! x

[Clarebear in reply to Hidden]

Thanks xx

[tingles]

Im so jealous! Bristol is about a hundred miles from me, otherwise I would be there like a shot

T

[Clarebear in reply to tingles]

Hi tingles - you could always set up your own meeting. Our group started last year when one person (Sally) posted a question on here about whether there was any one in Bristol who would like to meet up. It has taken off gradually from there. We usually just sit around in a cafe (or room when more people) and have a good chat xx

[chocolate49]

It will be great if a meeting can be arranged on the 16th March, as I have tried to make the other meetings but due to working full-time have so far have been unsuccessful. This support group has been so helpful with advice and tips for all of us I am sure.

I also feel so much better than this time last January and there are more days now that I feel nearly normal. The support from this group has been invaluable to me and I am sure everyone else. Hopefully I will see a few of you on the 16th!

[Clarebear in reply to chocolate49]

I will post about this again nearer the time

[sallyb]

It was a truly humbling experience to be sitting around the same table as so many inspiring people, each one having been on an incredible journey. Someone told me some years ago that it is not what you achieve in life, but who you become that is important. Well yesterday I met many people,each of whom had climbed their own `mile high staircase` and despite and because of it all, who they had become was evident and wonderful to behold.

Over the weeks ahead, as I journey on, I will keep you in my thoughts and prayers.

Thank you to each one of you and hope to see you all again one day.

Sally

[Clarebear in reply to sallyb]

Hi Sally - it was lovely to meet you and you were one of the people with such an inspiring story - hope you come along again soon

[zarjaz]

Thank you too Clare, and Sally for organising the group,

It was indeed inspiring and very moving to hear what an incredibly difficult journey some people have been on. I feel more encourged and motivated to sort out my own recovery and more confident about communicating this to my GP and endo. Paul's clear info was really useful (it's taking me a while to really understand the science, what with the foggy brain etc),

It was certainly worth the 3 hour round trip for me and I hope to come next time or in March. (if anyone wants to come from the South Somerset area, maybe we could share the journey?)

Thank you everyone and good health,

Joanna

[Clarebear in reply to zarjaz]

Hi Joanna - thanks very much for coming. Good luck with trying the T3 - if that is what you decide to do (hope I've got that right) and hope to see you next time x

[zarjaz in reply to Clarebear]

Hi Clare, thanks. Yes. I'm planning to try it. Am following Paul Robinson's advice and clearing out T4 first, and also getting an adrenal test done. Am wondering thoiugh why the Endo prescribed T3 not Armour first... is Armour more expensive? (T3 is £28 for 28 x 20 mcg).xx

[Clarebear in reply to zarjaz]

Hi zarjaz - no my understanding is Armour is cheaper than T3 but Armour and other NDTs are unlicsensed in this country (but sill prescribable on a "named patient basis"), so often endos/doctors are reluctant to prescribe it. From memmory when I was getting Armour on a private prescrption it cost me about £35 for 3 months. xx

[hymermad]

Would have loved to have come as only in the Forest of Dean, but was too poorly to make it. Hopefully will get to one of your future meetings.

Caroline

[Clarebear in reply to hymermad]

It would be lovely to see you at a future meeting - hope you are feeling a bit better soon. x

[hymermad]

Thank you Clarebear

[sarahstevenson]

Sorry not to have posted earlier - MANY THANKS to Clare and to Sally for setting up the meeting and also to Paul for his valuable information and most especially writing his book.

Thank you to all the 16 who were able to get there and to share their stories as it says above some real journeys of discovery determination and fortitude !

Re: Armour rather than T3 on NHS. It seems as Clare says that the NHS will usually only prescribe T3. My Endo in Bath did not list NDT as an option at all saying it is unreliable in dosage - she admitted we had read more about it than she had but wouldn't feel she could oversee a trial. May be we should have pushed harder and reassured her re amounts ? Not an option at the moment as she has signed me off.

[Clarebear in reply to sarahstevenson]

Thank you See you at the next meeting xx

[sarahstevenson]

Thank you - lovely to see you again X

[mmatrina]

I too am sorry that I didn't get to the meeting. Were there others there who use the circadian method of taking T3? I found that, after decades of ill health, taking my first dose at 4.00 am has transformed my mental and physical health. Thank you Paul for writing your article which prompted me to try this method.

The Professor at the BRI was the first person to explain to me the science of my hypothyroidism and the link with the adrenal system. I think it may be a good idea to invite someone from his department to a meeting but only if they understand they are being invited to listen and not just talk at people.

And thanks to the support group organisers who have also spent time on this forum.

[Clarebear in reply to mmatrina]

Hi mmatrina - thank you for your suggestion. Would you be able to send me a PM with the name of the professor you saw? Thank you.

I myself use the CT3M and starting it seemed to be the turning point for me I take my first dose at 5am. Paul is hoping to come along to our next meeting on Friday 1st February - so maybe you might be able to come to that one? xx

[mmatrina]

Am happy to send you info re the BRI - if I send a message to you via this website will it be private? Excuse my ignorance but this is the first time I have taken part in a web forum like this.

Will definitely go to the next meeting if Paul Robinson is attending and the snow has gone and - we are now living near Monmouth and we have lot of it!

[Clarebear in reply to mmatrina]

Thanks Yes if you send me a PM then it will be private. Just click on my name and then on send me a message

We have quite a lot of snow but you must have been in the red area? xx