My thyroid story

I had a large goitre & had half my thyroid removed 7 years ago. I became unwell within a few months & was refused Thyroxine even though my blood results were T4 9 T.S.H. 5. I saw an endocrinologist as I was exhausted, had pins & needles in my hands & feet & had constant bladder infections. I was told by the endocrinologist that I was borderline hypothyroid & that she wanted me to have a trial of Thyroxine. The senior doctor refused to let me have medication though. I now have constant chest infections, bladder infections & have a burnt, sore throat due to acid reflux. I saw an E.N.T. specialist who told me my problems were caused by being overweight. I am a size 14 & although I have gone up a dress size since my operation I am not obese. I exercise everyday & have a strict diet with no snacks. I cannot lose weight which I was told to do. My Ferritin level was 300 prior to the operation & two years post op was 8!!!! I now have to take constant iron tablets & manage to keep to a maximum of 30. I have low calcium in my blood from time to time as my body no longer seems able to be able to absorb vitamins since my thyroid op.

I'm sure there are people out there who can live with half a thyroid gland with no problems. I suffer without my whole thyroid gland but the medical profession just roll their eyes when thyroid issues are mentioned & treat me as if I'm a hypochondriac.

I've shared my story as I'm new to this site. I've read about other people's experiences with interest & thank you for reading mine.

7 Replies

  • I am sorry you have been treated so badly. The fact is they really don't understand what they are (not ) trained to do and that is to restore our medication so that we can function.

    With a TSH you should be treated, especially as you have had half your thyroid gland removed and have clinical symptoms.

    In the USA they have their upper range for the TSH at 3, so we are way behind.

    I am not medically qualified but you do have appear to have hypo symptoms and I would say that your other problems are due to being untreated.

    If you email and ask for a list of NHS Endos/private doctors and if there is one near you ask your GP for a referral. You definitely need a second opinion from someone who knows what he/she is doing.

    At a size 14 and he said you were overweight!!! What cloud does he live on. They don't treat you and lay the blame on you for continuing/extra clinical symptoms.

    The quicker you have a new appointment the better.

    Have you had any recent thyroid gland blood tests done? If so, get a copy from your surgery complete with the ranges and post on another question - if you haven't, ask your GP for a full thyroid function test and someone will comment. It's the least your doctor can do.

  • jilyanna, thanks to shaws for directing you for some proper attention.

    I am of no use to you as am once again overwhelmed with sadness and anger at the way thyroid disease is not treated and particularly what you describe.

    Sometimes it appears that only the strong assertive wealthy or aggressive get treatment. So often these are the characteristics we are robbed of when developing these disorders.

    I so wish you strength to be what you can and hope you follow Shaws advice.

  • Incredibly angry at reading your sad story. So hope you are able to get the treatment you so clearly need and deserve

    Jenni x

  • Hi Jillyanna

    I'm so sorry you are going through this and suffering.

    As if the condition isn't enough to cope with, to be treated in this manner is despicable. Yet another case of neglect - I'm so upset for you.

    As Shaw says 'they don't treat you and lay the blame on you'.

    My understanding is that if your thyroid results show 'borderline' and you have symptoms, you should be treated.

    Please follow Shaws advice.

    Best wishes

  • +1 from personal experience that if it's furry, has a tail and barks that it's likely a dog. I'm likewise not medical, but struggled through 12+ years of unadiagnosed hypothyroidism while being assured (with increasing irritation and eventually outright ridicule) that based on the stock blood tests my thyroid was 'normal'.

    'We all get a little bit of depression at our age' was the refrain.

    If you're not well and demonstrating what sound like fairly classic hypothyroid or similar symptoms then you need to get properly diagnosed - whatever the cause.

    My own experience was that i developed serious chronic fatigue, lost a career, and ended up in hospital seriously ill. The eventual thyroidectomy was necessitated by a thyroid cancer and a greatly enlarged thyroid that was only found late on during this stay, and the pathology showed advanced auto immune thyroid disease as well.

    The hypothyroidism was never ever diagnosed Once I'd had the thyroidectomy the evidence so to speak was gone..

    I was already hypothyroid with most of the regular symptoms and many classically associated conditions prior to a partial thyroidectomy, but within a week or so of it was in real trouble - the 'maintenance' dose of T4 given was far too low.

    In desperation I ended up travelling to the UK to see a thyroid friendly Doc. It helped, but I didn't really get sorted until after the completion thyroidectomy and a switch to an endo prepared to prescribe some T3.

    The proof of the pudding was in the eating - it transformed my situation, and has largely resolved most of the secondary conditions. It's become clear that for whatever reason I was producing reasonable amounts of thyrone hormone (so far as the stock blood test was concerned), but was unable to make enough T3 (the active form of the hormone) from it to feel well.

    The stock blood tests should certainly not be ignored when abnormal, but my experience and that of many many others (and there's more and more research to show this) is that the reverse isn't necessarily the case. Because there are many potential causes of hypothyroidism the tests don't detect.

    Good luck with your search. If you're not well don't let it drag on as it just gets harder to sort out as the body gets further out of whack.

    My own experience suggests that if a practitioner is not responding to obvious symptoms and insists you're normal despite these that it's probably advisable to not attempt to 'win' (it's not about winning) the argument as it tends to trigger defensive responses. Better to do the research and move on to another thyroid friendly doc...

    Don't be surprised if it takes a few attempts to run your issues to ground...


  • OMG you have been treated appallingly. Hope you find suitable treatment soon. X

  • Horrible story, Jillyana, I hope others here have given you something to work on. Wishing you the strength to do so.

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