Support group

[Churchy12]

Hey I was just wondering if anybody knows of any Thyroid support groups in Hertfordshire at the present time (Stevenage/Baldock/Hitchin/Letchworth) I’ve tried doing a search on here but the posts I’ve found are from a few years ago.

[shaws Administrator]

email Dionne at TUK and usually they know if there are groups in certain areas. They wont be back till Tuesday.

[e-mail]

[Churchy12 in reply to shaws]

Thank you I will do that first thing Tuesday 😀

[shaws Administrator in reply to Churchy12]

If there isn't you might like to begin one if there's sufficient people. Even if there's a couple you can always meet in a cafe/

[Churchy12 in reply to shaws]

That is a thought just not sure how you go about setting it up.... and if I’d get any interest ?? From what I can gather there isn’t any support groups around here I’ve done endless internet searches etc. I’d love to just chat with people experiencing the same as me I think I drive my family mad as they have to listen to me go on and on about every little thing that’s wrong with me I’d be fed up with me too.

[shaws Administrator in reply to Churchy12]

TUK I'm sure will advise. Even if you only meet every couple of months it enables us to get things off our chest as we understand so well how we are failed by the majority of doctors and even endocrinologists. Especially now that they will not prescribe anything but levothyroxine, whereas in the past if not improving we were given a trial of NDT or added T3 to T4. Some even got T3 only. Now those who've had other than levo prescribed are left in the lurch and frantic.

[shaws Administrator in reply to Churchy12]

I think my family/friends think I'm neurotic too but the fact is that I cannot get over that I remained undiagnosed for such a long time and given 'other' diagnoses except the 'real' one, i.e. hypo. Not one took a blood test for hypo despite a list of clinical symptoms and they know none at all.

[Churchy12 in reply to shaws]

I feel in such a dark place sometimes and I feel let down by my body ,I currently don’t take my Thyroxine as I have a real anxiety with taking pills I’m convinced I’m gonna react to them ( stems from a reaction as a child to penicillin) I’ve had CBT but don’t feel any further forward my family are at their wits end with listening to me and with me refusing to take the Thyroxine they know I’m getting worse as the months go on ( I was diagnosed over 2 years ago) I lost my Nan who I was very close too in January she was always there to talk now there’s a massive void and no one to listen to me harping on she used to just listen to me. I’m in a bit of a state really.

[DeeD123 in reply to Churchy12]

If your in any fb groups for thyroid why not put a post on them asking if anyone’s in your area and would be interested. I’ve seen it done and even joined a local one myself through someone doing just that. Hope it works and good luck. X

[Churchy12 in reply to DeeD123]

Thank you x

[shaws Administrator in reply to Churchy12]

Don't look on levothyroxine (T4) as a 'drug' it is a thyroid hormone. You have to have enough so that it converts to the only Active Thyroid Hormone, liothyronine (T3). There are very serious consequences if we don't take thyroid hormones if we need them.

Our metabolism cannot function optimally if our dose is too low and our heart and brain need the most thyroid hormones as do the millions of T3 receptor cells.

Before NDT was invented (natural dessicated thyroid hormones) in 1891/92have people died and we have no option but to take thyroid hormones so we have to supplement with levothyroxine (thyroxine) or other thyroid hormones which we'd have to source ourselves as the NHS don't now prescribe anything but levothyroxine.

I am sorry your Nan died but you have to look back and be thankful you had someone who loved you as you are and listened. I lost my sister last year and it does leave a big void in our lives.

Levo is T4 and is increased gradually until we feel well with no symptoms. Sometimes we need to add some T3 but might have to source it ourselves as NHS has stopped providing. You will see on the following link that mental health issues can occur with hypo, so essential to have hormones at an optimal level.

thyroiduk.org.uk/tuk/about_...