Any help greatly appreciated: Hi everyone, I am... - Thyroid UK

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Any help greatly appreciated

Fid10 profile image
4 Replies

Hi everyone, I am blown away by the wealth of information on this forum, and how lovely and helpful everyone is. I have been struggling for years and am really hoping for some help please and I apologise in advance for the long post.

It all started for me in 2011. I had just got back to my normal healthy self a year after having my daughter when the symptoms started. I was utterly exhausted and cold, with brain fog, dry skin; I was losing more hair than I had after pregnancy and was putting weight on rapidly despite eating much less as I didn’t even have the energy to go to the kitchen and make so much as a sandwich! We had just relocated and couldn’t get registered with a GP, so I just put it all down to stress and being a parent at the time. After finally getting registered I had some blood tests and my TSH was 3.1 which the GP said was normal and ushered me out the door.

Shortly after I noticed a large lump in my neck, and when I went back to the GP his rather hostile demeanour changed to concern and referred me for US with FNA which revealed a 3cm mass encompassing the right lobe of my thyroid. As a result I had a hemithyroidectomy in December 2011. Despite the pain and discomfort immediately after surgery I felt the best I had in a while; I wasn’t tired, and my brain was working again. At this time my TSH level was 0.5. Slowly though, this feeling faded and I felt worse than ever. I kept going back to my GP, but they would only test for TSH which was always between 3.6 and 4.5; within the reference range of 0.4-5.0 and hence hypothyroid was always dismissed. I tried to research other explanations for my symptoms, but nothing else ever really fitted, so I have just muddled through since, feeling worse and worse.

Last year I started to have a lot of trouble with angioedema of my face, abdomen, hands and feet, through which I found out about private testing options as hereditary angioedema was suspected but not all the tests were available on the NHS apparently. Whilst these were negative, type 3 is suspected and I have an appointment at KCL in a few months which will hopefully shed some light on the issue, as the swellings don’t respond to steroids or antihistamines and have involved my throat in the past. In this process I also ordered a thyroid check with MediChecks, which I repeated this year and have copied the results below. On the strength of the last test my GP ran some extra bloods, but as these are again normal won’t take any action. Also I am currently supplementing vitamin D.

Sorry again for the long post, but if anyone can shed light on my results it would be much appreciated. I am open to literally ANY suggestions, and would love to know why my TSH value varied so much in a couple of weeks (6.18 then 1.5) as they were both morning tests (although the 1.5 was late morning) for which I hadn’t eaten since the previous evening. I have had marginally raised cortisol levels in the past (4 years ago), but an endo decided it was all fine and got me trying antidepressants for 2 years, which didn’t make any difference and I have now come off sensibly with no adverse effects thankfully. I also have signs of carpal tunnel syndrome, but haven’t got up the courage to get this investigated yet as at this point I feel like a total hypochondriac, and dread going to see doctors!!

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Fid10
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4 Replies
Aurealis profile image
Aurealis

Personally I don’t find TSH a reliable test - I have experienced a decrease in TSH following an decrease in dose and visa versa. I think you have to repeat tests following strange results.

Fid10 profile image
Fid10 in reply to Aurealis

Thank you so much for replying 😊 I was quite upset to get the NHS test result less than 2 weeks after finally getting an out of range TSH result from medichecks of 6.18. I felt equally bad on both days so am just so frustrated as I still have no hope of diagnosis or treatment. I don't understand how anyone has any hope of being diagnosed and properly treated when the metric they use to base everything on varies so wildly.

Aurealis profile image
Aurealis in reply to Fid10

They are supposed to also take into account clinical symptoms! I wonder if thyroid may be identified at your hospital appointment? It may be worth you reposting as you haven’t had many replies this time. Good luck

Fid10 profile image
Fid10 in reply to Aurealis

Thank you 😊 I will try reposting later, and make it a lot more concise as I know I probably rambled on too much in my first post (thank you so much for reading it 😊) It is comforting to know I am not alone, but I feel so sad that all these people are so ill and that is fine by the majority of GPs and endos 😳

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