Thyroid crew: Thank you for your support. - Thyroid UK

Thyroid UK

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Thyroid crew: Thank you for your support.

Abi-Abster profile image
6 Replies

I just wanted to say a heartfelt thank-you for your advice and input this last fortnight. Despite being hypothyroid and on Levothyroxine for over 15 years, I've learned more about the condition since I joined this website than I have over the preceding decade and-a-half.

Having gone to my GP for the last two years explaining that my thyroid symptoms have flared up to the extent that I'm in and out of bed with pain and exhaustion, only to be prescribed ever-stronger painkillers, it's been a lifeline to be learn from you guys that the blood test results he said were fine (most of all Ferritin at 20, right at the bottom of current guidelines) meant that I wasn't absorbing the Levothryoxine properly.

I've also paid for a private blood test via Medichecks for which I received a discount because one of you pointed out there was such a thing as #thyroidthursday (who knew?)!

Anyway, having been diagnosed with ME and CFS for many years (actual diagnosis coming nearly a decade after the initial flu virus that knocked me for six), I remember the fear of knowing something was wrong but not knowing what it was (this was in the 90s pre-widely accessible internet).

I remember the GPs and 'specialists' being unable to help, I remember being so frightened and feeling so isolated - and this was before a diagnosis when I was just looking for answers - and being made to feel like a crazy kid for having all these symptoms that nobody in the medical profession could explain.

When I finally received a diagnosis of ME/ CFS I was relieved: my condition had a name. But that was before it was made clear that there was still nothing that conventional medicine could treat other than the symptoms, i.e.: bed rest (or even worse, Graded Exercise Therapy, anti-emetics for the nausea, ever more painkillers, etc etc).

The reason I'm telling you all about this is because right now at 41 years old, I'm recognising echoes of the CFS/ ME fear and lack of support from the NHS that I had back when I was in my teens and twenties. It's a frightening feeling to be alone with a condition, and no matter how well-intentioned family and friends can be, if they don't have knowledge of the subject matter then there's only so much support they can give.

Which is where you guys come in: because YOU have this knowledge. Having researched and studied the thyroid to an extent most endocrinologists would aspire to, what the hive mind can offer here - from all angles - is unsurpassed.

Thanks to your holistic views on thyroid issues, I know that when I get my next set of blood results through in a fortnight that you will be able to tell me more than my GP, be able to explore deeper and explain better than your usual 3 month NHS waiting list for an initial assessment (followed by another three month wait afterwards to see an actual consultant!).

So, thank you from the bottom of my heart for collectively being patient with my ignorance and confusion, for talking through my blood test results and for your advice on what action to take. Your time is very much appreciated, and your input is invaluable.

Wishing each and every one of you on this forum all the very best,

Abi.

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Abi-Abster
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6 Replies
shaws profile image
shawsAdministrator

Thank you for your kind post. It was Thyroiduk.org.uk who enabled me to get well and there was no forum them but most now know more than many Endocrnologists, thankfully.

cwill profile image
cwill

Abi darling I hope that you are continuing to find answers on your own. I wouldn't wish a diagnosis of CFS/ME on anyone as they use it as an excuse to do very little thereafter. So well done!

Abi-Abster profile image
Abi-Abster in reply tocwill

You're so right! Thank you 😊

lynmynott profile image
lynmynottPartnerThyroid UK

Thank you Abi. We couldn't run the forum without our admins and the members on here. We are very grateful for all their hard work.

Would you give me permission to use the first paragraph of your post for our Annual Report when I do it? It's good to show that people can get help from our forum.

Abi-Abster profile image
Abi-Abster in reply tolynmynott

Absolutely. With pleasure!

And you're right: I have noticed the Admins are very 'on it' here. Most impressive!

Thanks again All 😃

lynmynott profile image
lynmynottPartnerThyroid UK in reply toAbi-Abster

Thanks so much Abi! I'll let you know when the Annual Report is available. Won't be for some time though...

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