Thyroidectomy followed by feeling totally unwell - Thyroid UK

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Thyroidectomy followed by feeling totally unwell

traceytired profile image
10 Replies

I had a total thyroidectomy in November 2011 due to a non malignant tumour. I am currently on 150 Thyroxine one day and 175 the following day. According to my GP my levels are satisfactory now. However, I suffer from aching all over my body (GP says it's my age - I am a 49 year old female), night sweats, headaches (above eye on right hand side), tinnitus, anxiety and I don't feel like "myself".

Does anybody else feel this bad? My GP makes me feel like a hypochondriac!

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traceytired
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10 Replies
she33 profile image
she33

i had a thyroidectomy 6 yrs ago due to graves disease and i have never felt well since, i now suffer from fibromyalgia and getting tested for arthiritis, i truley believe there is a link between these conditions keep on at your gp it took me 2 yrs of fighting as i knew something was wrong x

traceytired profile image
traceytired

Thank you for that. I was sent for a hand x-ray and the result was that I probably have arthritis....GP didn't want me to be referred to Arthritis clinic just yet because I get relief from the pain with Ibuprofen, but I seem to be taking it more and more regularly. I do my best to excercise and be healthy, but it's so difficult when the pain keeps dragging me down. Blood tests being done again at the moment, but I'm fully expecting them to come back "normal".

xx

debjs profile image
debjs

Have you asked to see your levels? I was told my levels were fine post my thyroidectomy but was very unwell and in fact my T4 was barely in range even though my TSH was low. (I have had a lot of other problems since but that is a starting point). I have since been told that people are often on too low a dose. Also have your calcium levels been checked? I had terrible muscle pain and cramps, particularly in my hands and legs and my calcium levels were low in range. Again I have been told that calcium levels should ideally be above 2.2 if you have had a total thyroidectomy.

traceytired profile image
traceytired

So I should ask for a print of my results? There are 4 GPs at my surgery, and I really don't have faith in any of them. I keep going back, and keep being told that I'm normal. I do wonder whether they know what they are looking at. When I get the print, do I post details on here? I have no idea what I'm looking for.

in reply to traceytired

Yes :-)

Some info here which might help:

thyroiduk.org.uk/tuk/diagno...

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

Louise

x

shaws profile image
shawsAdministrator

This link may give you some info

web.archive.org/web/2010103...

and first letter

web.archive.org/web/2010103...

traceytired profile image
traceytired

Thankyou so much for your help. It's all very interesting reading. Looks like I need T3!!

Muffy profile image
Muffy

Apparently, most patients who have had a thyroidectomy, need natural desiccated thyroid to feel better.

traceytired profile image
traceytired

My mum had total thyroidectomy due to cancer a year before me and suffers all the same symptoms as me. We're going to the GP together, and taking my 19 year old daughter too. She doesn't overeat, but she is morbidly obese, yet her thyroid function is "normal". Lets see what the GP says about family history and thyroid function tests being normal!

traceytired profile image
traceytired

Ah well, result with GP was very much as I expected. My poor mum has been referred to a heart specialist because of her sleeping problems and irregular heartbeat. T4/TSH normal, so no need to look further into that! I have been referred to a rheumatologist because I have suspected Fibromyalgia, and have been put on Amitriptyline to help me sleep at night because of the constant pain. Requested a T3 test, but was told that it is not availableT4 and TSH are normal so I don't have any problems!. Suggested that the GP should look at the submissions to the Scottish Parliament and refer me to an endo. GP said she can't do that until she has investigated my fibromyalgia. My daughter's T4/TSH results are normal, so she doesn't have any problems. AAAAARRRRRGGH. Totally fed up.

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