Thyroid UK
87,640 members102,335 posts

My story

Hi. I joined the facebook support page and have been humbled by everyones stories of their journies. I thought I would share mine with everyone here who may not have seen it

. I had an underactive thyroid for 30 years with a multinodular goitre. 9 years ago it was discovered that one of the nodules had become severly overactive so my thyroid was removed ( but not before having been extremely ill for 2 years and sent for a variety of nasty tests for cancer in other parts of my body !) I recovered and was stableised on 200mcg Levothyroxine . I have had several operations since though..broken back; ; carpal tunnel ops( wondering if they necessary as they found after that I had actualy broken my neck.!) Then last year as a result of scans to my neck I was found to have a brain tumour...what a lucky girl I am !!! The removal of this led me to be paralised down my right side and I spent several weeks in rehab learning to walk again. I began to feel well again...thats until I changed gp practice due to relocation and new GP decided I needed an "mot" !. She decided I was overdosed on levothyroxine and reduced it in stages from 200 to 125 at which point I thought I was dying and also suicidal. Fortunately I know the senior partner and he has interveneed and I am on the way back up to 200 now. Still dont feel great but feel better ! Angry that I was made ill for no good reason. I empathise with evryones symptoms..we all seem to have so many in common.Thyroid UK has been my life support and I thank everyone there for it. Sorry for the rant !!! Its been a tough time, especially as I was widowed 16 years ago with a ten year old still to raise. I got there and he is now a doctor too !!! People have told me I am strong...have not really felt it, and to be honest often embarrased by having to say there is yet again something wrong with me. Thats why I am cross with this latest thyroid episode as I was recovering well from my brain tumour op even though I still walk a bit wobbly !!!

There is always a light at the end of the tunnel, however long and dark it is. We just have to struggle to get there at times xxx

11 Replies

Have a look at the case studies over on the main Thyroid UK site:

(And there are sections for other issues.)

Perhaps you would like to submit your story there so it remains accessible (on HU the rate of posting means they do not remain easily accessible for long).



Hi Rod...tried the link but it doesnt work ?


The link works fine for me. However, another way to approach this is to go the main main website and then navigate from Get Involved > Case Studies on the purple menu bar across the top.

Also, here's a direct link to the 'Submit Your Story' page for you.


Tried both and still comes up with a blank page even if i google the site....says method not implemented or something !!!


Wondering what browser you are using?

Works for me!

If you are, for example, using a mobile phone, could you try a PC? Or a Mac? Or vice versa?


i am using a mac ....I will try it from phone...but thats apple too !!!


Oh dear, well the site is working just fine so this sounds as if you may have a browser problem. What browser are you using on your Mac, Safari? Firefox?


Safari. I will turn off computer and start again. See if that helps !!!! Thanks guys


ow dear my girl, your post shows strengh and courage, I havent had it as severe as you but I do feel that having unnessary test and scans have caused me more issues. I also have a M goitre and just had MRI on the neck no results yet.

Caprel tunel, compressed spinal fracture, neck issues, the list is endless.

I was told over and over again I needed one more test one more scan as cancer had been intermated on sevsral occasions and I was in complete meltdown.

good luck my friend, wish you happiness xxx

1 like

Bless you Merrisa....I wish the same for you and hope things get sorted for you soon x


Welcome maddi What a story! You ARE strong, no two ways about it All that and bereavement young too. I also have found this site to be a life line and am thinking now I should write my own case study.

Does your doctor son specialise in thyroid per chance? ;-) That would be useful.


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