Trying to locate some important info on 'Thyroi... - Thyroid UK

Thyroid UK

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Trying to locate some important info on 'Thyroid UK' website please.

Coastwalker profile image
28 Replies

I have spent ages trying to find a page on the 'Thyroid UK' website which mentions about there being no blood tests for Hypothyroidism in the 60's so Doctors went by Symptoms only.Then when blood tests came in Fibromyalgia, CFS and ME were all born.

Can anyone point me to the right page please as I need it to be printed out for someone.

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Coastwalker profile image
Coastwalker
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28 Replies
LouiseRoberts profile image
LouiseRoberts

I think you mean this page..

thyroiduk.org.uk/tuk/relate...

Coastwalker profile image
Coastwalker in reply to LouiseRoberts

Thank you Louise Warvil,

:) Spot on, you have saved me much time. I read that page several times quickly, but obviously too quickly. Many Thanks.

LouiseRoberts profile image
LouiseRoberts in reply to Coastwalker

No worries! :) Hope it helps!

x

Marz profile image
Marz in reply to Coastwalker

Would be great if you could post the link on Fibro-Action for their members to read. I have just left the forum having had a post on Magnesium so edited there was nothing there - and all because Dr Sircus sells a few products. Whatever next ? Firstly I was banned for 3 weeks for daring to stand up for myself - so I decided to leave. Every little thing I have tried to do to help has either been questioned by Admin or edited - don't think they want their members to be well - they might just leave the Forum :-) I was questioned - by Admin - that I possibly did not have Fibro as I had such a good recovery !! I was diagnosed by a Rheumatologist in the UK some 15 years ago - and I only improved/healed once on thyroid treatment from late 2005 onwards.

Am so grateful for the open minded people on this forum who are fountains of knowledge - both inside the box and outside it :-) Everyone seems so supportive and full of positive ideas and information. We should be very proud of the contributions made on this forum and the way it is run - thank you Admin....

M x

Coastwalker profile image
Coastwalker in reply to Marz

Nice to hear from you again Marz, :)

I too have had some deleted as people have not replied to back to me,

:O my name has been highlighted/blackened, which ever way you call it :(

Haven't got the hang of post linking (which is slightly embarrassing,) though I'm sure Daughter/Son would sort me out :) though I'll probably be binned/banned on the fibro site that's for sure :)

Remember you saying your Hubby had RA and Hypothyroidism Marz.

Our Update:- Hubby and his swollen Arthritic hands and X rayed & diagnosed Arthritic foot due to old injury does not have muscle weakness Rhumatologist said.

He asked if Hubby had any other symptoms,

:) I pulled out of my pocket a long list of Hypothyroid symptoms, he just dismissed them, I suggested they were a collection of Hypothyroid symptoms, he checked Hubby's bloods on screen and said 'no negative on thyroid'.

I just said to Rhumatologist as we left his room 'well that's good news then Hubby's muscles are all OK' (I just wanted to get out of there and scream.)

Hubby is not well, his weakened muscles are hurting, he finds it hard to hold up the kettle or mobile phone to his ear for long calls, also tired and often feels shivery and cold plus other hypo symptoms, (though others on here suggested to look into VitB12 deficency, (can apparently mimic Underactive Thyroid,) or maybe Aneamia/Folate deficiency.

Have written a letter to Hubby's Doctor explaining everything and asking for a blood printout, if no joy with Doc, we will have to go down the self diagnosis way as many others do.

Marz profile image
Marz in reply to Coastwalker

Sorry to hear about your Hubby and the on going battle for a diagnosis. My Hubby has Hashimotos - no RA - thankfully. Hope you soon will have the copies of Hubby's results. Good he has your support - what we do for our men eh ? Keep on battling......... M x

Coastwalker profile image
Coastwalker in reply to Marz

:O Apologies there Marz, (about your Hubby having RA,) can't blame it on my brain fog no more. ;) Thanks for support. :)

nightingale-56 profile image
nightingale-56 in reply to Coastwalker

HI coastwalker, I felt like this after antibiotic problems 7 years ago and have gradually improved when getting my Vit D3 at a good level (70 and above) and also by taking Nutri Adrenal under Dr P's guidance. Hope he improves soon. Janet.

Coastwalker profile image
Coastwalker in reply to nightingale-56

Thank you Janet, have written it down, sorry to hear you too were like it.

PinkNinja profile image
PinkNinja in reply to Marz

Sorry to hear you were treated in such a way :(

I think part of the problem is that they have fought so long and hard to be listened to and have a diagnosis taken seriously that they are (understandably) too scared to allow anything that may even slightly suggest that something that simple could make things better for them. As a result, they seem to have developed a very defensive clique. I can see where they are coming from but unfortunately, as you have suggested, that is not going to help them or their members in the long run :(

Good to hear from you again :)

Carolyn xxx

Marz profile image
Marz in reply to PinkNinja

Thanks CarolynB for your reply. Sadly it was the editing of the Magnesium link that was the straw that broke the camels back. When I first posted I was questioned as to my background - why did I have so much knowledge - was I a medic and so on. My fibro diagnosis I was told by their Admin must have been mis-diagnosed as I had recovered well. I was also told that to continue posting I should complete my Profile in order to be listened to - or words to that affect. All these things have NOT happened in the two years I have been with Thyroid UK.

Am afraid it has amounted to bullying by someone that was trained in the NHS and who would not allow any comment outside the remit of a GP. There are some people on that site taking 30 pills a day - and just looking at their pictures I can see HYPO written all over their faces.

I have received a couple of PM's from the forum - both very supportive in their different ways. One mentioned the fact that the site was possibly being run by a Pharmaceutical company and another thought it was just one BIG Pity Party !!

I totally understand your comment about being listened to - but whenever you make a simple suggestion that may just help - there is complete and utter silence. I think it has more to do with having a diagnosis that may just allow them to receive some sort of benefit....that may sound harsh - but it is talked about on a daily basis. Mention TFT's and you hear nothing....B12 and VitD nothing - and then a post about magnesium relaxing muscles and it is DELETED ! Reading the PM's to me from Admin it is all about Rules and Regulations - so the freedom of speech does NOT exist - and guess what - I apparently broke them all :-)

I will be 68 this year and do not relish being bullied and bossed about - I like being a Grumpy Granny and will continue to fight for what I think is right - and that is for everyone to have access to the correct testing and treatment - and that is why I joined Fibro-Action in the first place....I was hoping to help others based on experience and not a long list of medication....

I have been thrown out of better places !.....thank you for listening to my rant. I am very annoyed and have been out this evening and shared 500ml jug of local wine with Hubby in a local taverna - with octopus and wild asparagus. Nothing like the asparagus you know - more like stringy weeds - but probably good for the digestion..... :-) Apologies - I have hi-jacked a thread....xx

M x

PinkNinja profile image
PinkNinja in reply to Marz

Good for you, sticking to your guns! One can only hope that someone got some help from your posts before they were deleted.

Coastwalker profile image
Coastwalker in reply to Marz

Know exactly where you are coming from Marz, I have had the same thoughts on it too, I get daily prompts on our emails like we do on Thyroid UK, on here our posts consists of members wanting help, members giving out help, tips and advice, we learn a lot on here to help us all get well again.

Fibro Site is all about what's on Telly, a few jokes, everyone saying how unwell they are, what pills they are on, etc., seems very negative all round, I have jumped in a few times prompting them to get their thyroid bloods checked, but heard nothing back. :(

Will keep an eye out for anything positive happening. :)

in reply to Coastwalker

you may be waiting awhile for anything positive! (sorry been in this game too long maybe!) J x

Coastwalker profile image
Coastwalker in reply to

:)

Coastwalker profile image
Coastwalker in reply to

:) Excitement :)

Something positive found on Fibro site. Someone asking if Underactive Thyroid can be misdiagnosed as Fibro? is there a connection ? do you have both? which came first?

Marz profile image
Marz in reply to Coastwalker

Even if they have their thyroids checked - they are probably told they are normal - so nothing more required. They rarely bother to educate themselves to learn what proper testing is even when people like you step in and try to help. I have done various posts about thyroid/gut health and so on....wonder if they are still there ?...rarely hear anything back. Even B12 seems to be ignored - along with VitD.... :-)

in reply to Marz

Oyez Marz! - my experience with Fibros are they remain focussed on pure fibro - from fb, other forums, & wherever.... maybe it suits them....fine!

at last... However - I have for a while wanted to make little note (shout) that us roidies DO entertain alternative but related ideas such as investigating other stuff to feel better, e.g. coeliac, low minerals and vitamins etc.- we are not territorially focused on just ONE anatomy part but realise all work together and Thyroid trouble is so diverse- yet we want to GET BETTER! - I could spout way more but as an admin it's not appropriate.....

J :D

P.S I maybe sightly biased as CFS/ME suggested after my thyroid PT op - d'ya think it could've been Thyroid? - duh! x

in reply to

To be fair, this is what they are told, and no hope of treatment as everything gets blamed on the Fibro. :(

Coastwalker profile image
Coastwalker in reply to

So very 'unfair' for them to have info we post to them not passed on so they can choose for themselves. I answered the person, felt I had to help them, to all their questions I just answered yes, yes, yes. So hoping they will work it out themselves that Fibro connects with Hypo before being wiped off.

Coastwalker profile image
Coastwalker in reply to Marz

A bit of action on Fibro site, have answered Spareribs see down below or might be above :) I darn't answer it yet.

PR4NOW profile image
PR4NOW

Coastwalker, Actually there were some blood tests for thyroid in the 1960s. The T4 test was invented around then and found lacking and the first paper on the TSH was in 1965. The PBI or protein bound iodine was introduced around 1941/1942 and was used into the 1970s, it wasn't highly accurate either. ATA, American Thyroid Association just added a nifty thyroid timeline to their website for those that are interested. PR

thyroid.org/events/thyroid-...

Coastwalker profile image
Coastwalker in reply to PR4NOW

Took a peek, is it all to do with just America PR4NOW ?

PR4NOW profile image
PR4NOW in reply to Coastwalker

Coastwalker, no, this is a timeline about thyroid history from around the world. In recent western medical history a lot of the early thyroid research was from England, circa 1860s/1870s on. PR

Coastwalker profile image
Coastwalker in reply to PR4NOW

So best not to quote that one then? :( though might reword it to - not many Thyroid bloods were taken in the 60's Doctors went by symptoms only :) Would that be acceptable PR4NOW. ?

PR4NOW profile image
PR4NOW in reply to Coastwalker

Coastwalker, in the 1960s the prevalent blood test would have been the PBI. There were still many doctors that treated by symptom but I have no idea of the actual percentages. If I had to guess I would bet that more relied on the PBI than relied on symptoms, but that is just a guess. Remember the PBI had been around since 1941/1942. PR

Coastwalker profile image
Coastwalker in reply to PR4NOW

Best not quote that one at all then if it's not true, don't want to get out of my depth :o Thank Q PR4NOW :)

Coastwalker profile image
Coastwalker

Thanks too Reallyfedup123, will 'Google' myasthenia gravis and note it down, will certainly push for hypothyroid. :) also asking for his last bloods, we did ask before, but was only given the muscle blood test result.

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