Thyroid UK
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A cautionary tale and a GP's apology

Hi I have had a pituitary tumour for 20 years and this has lead to hypothyroidism 8 years ago.

I felt ok but never the same after the thyroiditis but then I moved house 2 years ago.

I just got worse and worse after a year I had gall stones not diagnosed by GP who offered antidepressants for pain until I collapsed as it became infected and had emergency surgery .

I had terrible pain in hips and knees could not walk far, breathless and major brain fog. I used a stick and arise and recliner chair to get myself up some days i could not dress myself.

I recognised the symptoms I felt the same as 8 years ago. I told the GP who under pressure referred me to endo they said definitely not and go away oh and by the way your vit D is low. The GP did not know how much to prescribe nor did the pharmacist so they guessed the bottle was French and dosage and patient information was in French but that was not a problem as vit d is not a problem in high doses or so I was told!!

After taking this for two months I felt 100 times worse the symptoms were so bad I felt I was dying my husband took me to NHS 24 doc who said I must have bought the vit d myself at that dose and what did I want him to do I explained could it be the V it d he said see my own GP. I stopped this myself and within one week I had stopped going to the loo during the night 8/9 times and started to feel more like myself. Calcium must have been out of range but they did not both to check.

I then tried again to get GP to listen but he was not interested but upped my high blood pressure pills as by now my readings were very high.

Now I do not suggest or advocate anyone try this without medical help but I came off my ace inhibitor blood pressure tablets and omeprazole proton inhibitor meds. I had read that long term use of omeprazole can lead to pain in joints muscle weakness, b12 is also not absorbed etc if taken long term I had been on this for 3 years. They suggest 3 month course as optimum.

First week no improvement got fed up but decided give it another week to see. I remember it was a Saturday morning I was having my little grandson to stay but I had been dreading the prospect as he is so active. I awoke having slept most of the night for the first time in 2 years. I started to get out of bed and realised the pain was almost gone I could bend easily. My husband came through to the living room to find me laughing dancing and I immediately showed him I could move more freely. Over the next few weeks I found an improvement in stamina and for the first time I could breath on exertion it's feels like taking a breath of fresh air on a cold crisp morning.

So why do I think the improvement happened. I could no longer tolerate omeprazole. But I had also taken all my medications together washed down with a milk coffee in the AM. I used activis and now returned to mercury pharma my old medication maker which I now take at night due to getting wise and reading sites like this.

Why did the GP apologise because armed with all my new knowledge gained on here I confronted him on not telling me to take levo on its own especially with anti acids etc for not listening to me and understanding my symptoms etc. I got an apology he is going to tell the other GPs and speak to the area pharmacist so they can inform people better. RESULT!!

He also supports my return to the endo to get my levels to an optimum for health .

I can't thank you all enough for your informative posts and thyroid uk's main site for the ammunition together people can make a difference!


9 Replies

An encouraging post for many who haven't yet found a solution. Why do we have to find a solution on our own?

Best wishes


Wow Lilypie! What can I say? Well done and really hoping things continue on the upward trend rapidly now for you!


I take my hat off to you. And, though he was obviously wrong over time, an apology and some intent to improve the situation is more than many get. So maybe tip my hat to him a little as well for doing better than most in the end.

But so, so well done.



Thanks for all your comments but I could not have done this without the support from all of you both here and on thyroid uk. Yes I have thanked him for eventually listening to me and I intend to write to my local NHS trust to explain my story and request a reply on the actions they intend to take to rectify this lack of basic knowledge on drug administration I bet they aren't so sorry!!! Watch this space.



you go girl and make them listen..


+1 on the well dones list Lily. As ever it's great to see 'yet another take responsibility for herself and find a way forward' - and in doing so spread the message that it's often possible.

There's times i'm convinced that for some of us that it's (while far from risk free or guaranteed to succeed) the life lesson involved.

There's a fine line between staying light enough that we are led by our hearts/knowing - and getting fixated on stuff (which scenario docs love to suspect - it's a favourite put down). The point though is that while it's a skill in itself it (and not the hierarchical and authoritarian claptrap the system operates by) is our natural state and an ability we're required to use!!

We each possess and/or can access a God or whatever given natural wisdom - which is often so effective. Add a co-operative and interested doc and the options multiply.

Every single step forward i've experienced has required action of this sort...

Well done to your doctor though - it sounds like he may have learned something too. My ex doc after 12 or so years of undiagnosed hypo eventually proven by the pathology report and the cancer for which my thyroid was removed is still hanging tough and refusing to admit anything...



Thanks for your comments if only they stopped protecting their own backs and said sorry more patients would then be able to get resolution to their health problems and feel listened too.

Take care Lily


Well done Lilypie for getting your doctor to see your point, and well done your doctor for letting other doctors and pharmacists know this information. Janet.


Thank you for you kind comment and yes the GP has exceeded my expectations on this occasion. Take care Lily


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