Do We Really Matter ?

I sometimes wonder ...what is going on?

We are under diagnosed ...and under treated and today I received an NHS questionnaire to fill in.......The GP Patient Survey.

On one of the pages was a question asking you to tick off any long term health conditions that you suffer from, but were Thyroid problems on the list?.......No .....just a tick box for "Another" without even a space to write what other condition!

Well I can assure you I added a note about Thyroid Problems on the bottom.

One wonders if we really do exist !!!!

14 Replies

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  • Well done. I do the same thing in these situations. The last one I filled in at my surgery was more interested in how the receptionist greeted me and whether I liked the seating in the waiting room. So I added a few comments of my own. It was anonymous, but I'm pretty sure they'll have known who filled it in because I'm such a "troublemaker"! Seriously, if you knew me you'd know that is SOOO far from the truth, but I have learned that as far as the medical profession here in the UK is concerned you have to really stand up for yourself. Jane x x

  • Thanks for that Jane.I am the same.I don't fit the "Angry Activist" role.I tend to take everything calmly for so long until someone really stirs me up and then I have to say something.However,I do really wonder how long it will be before thyroid problems will be properly acknowledged and treated.If you mention Thyroid to most people they say "What's That ?" By the way my survey was anonymous too.

  • Keep it up: it's the squeaking wheel that gets the grease.

  • Hi Marfit, good for you.

    I was misdiagnosed by my previous GP who said I had a high TSH but didn't act on it. She said something along the lines of "let's not worry about that". She didn't even explain to me as to why I had a high TSH in the first place! They refused to do more regular tests from that point onwards.

    So I changed GPs in Jan this year and my current GP is brilliant. When I was told my TSH was once again through the roof it was then that I knew that all my problems were not all in my head and I was right to worry. My previous GP was referring me to counsellors and therapists as I had difficulty swallowing!

    I have also complained to the NHS. I did complain before and my previous GP wrote to me directly. I felt very threatened by this as I changed address and they had gotten hold of it. I've now told the NHS commissioning department responsible that I don't want my previous GP to write directly to me and wish for the complaints department to act as mediator. I felt very uncomfortable about receiving this letter I wasn't expecting. I've even sent them photographic evidence of everything about my thyroid issues - the abnormal results, the prescription my new GP has given me which my previous one didn't even get that far to prescribe let alone come to the conclusion I had an underactive thyroid, anything I could think of.

    So thanks to them I have hypothyroidism that has come from Hashimoto's - which they refused to do a thyroid autoantibody test for because they only did those in "special cases".

    Whether or not I hear back from the NHS I'm not sure - I wouldn't hold my breath if they haven't replied to my complaint letter I sent to them in April.

    Whereabouts is this survey? Is it still available by the way?

    Take care xx

  • Sorry to hear of all your problems..it seems to be a continual struggle doesn't it.

    I have just looked at the letter that came with the survey.It came from Ipsos MORI who select you at random from the NHS list of patients registered with a GP.

    Best Wishes to you x

  • I received one once and it had such biased questioning that my answers could only read as positive and that was certainly not how I felt! The wording was such that you had to agree with the positive answer. They were all closed questions that didn't invite a negative response. I returned it with a note stating that the questionnaire was pointless as it didn't allow me to answer truthfully due to the biased, closed nature of the questions. I never got a response :(

  • I agree with what you are saying .I have no problems about my surgery as everyone is always pleasant ....it is a comparatively small surgery with a friendly family feel to it.However,with regard to Thyroid problems and the negative approach to them within the NHS the survey will highlight nothing!!

  • I was asked to fill in a survey form about depression on a visit to the docs. After completing the form I wrote on the bottom ' I have an illness that changes my life which is disregarded and treated incorrectly - of course I'm bloody depressed!!!

  • Can quite understand your response....it's such a serious subject we're dealing with here .....but Oh! How you gave me an early morning laugh.....so thanks for that X

  • Amazing! A condition that affects every cell in your body and it doesn't make the list!

  • Exactly! .......It doesn't make sense!

  • It is astounding,dr treats us like someone with a common cold,I mentioned to my dr last week that l was feeling so tired even after a nights sleep and was it because my ferritin was still low, he looked at his screen and said all was fine ferritin 28,aches and pains,dry eyes and fed up he said come back in a couple of weeks if you still have the symptoms,said l did,nt need iron but l feel the same when told l was anaemic so have bought spa tone , if l get a patient survey l will do as suggested and write on the bottom (THYROID SUCKS) keep up the good work folks x

  • I know how you feel....I was fobbed off year after year " your blood results are normal"....." how can I assure you there is nothing wrong with your thyroid"....all the time I was feeling unwell and beginning to think I was going mad as nobody understood me.

    Then I registered with this support group and ....WOW ......there were people out there with the same problems as me and I finally gained some knowledge and felt supported and armed with my DR A. Toft's book my visits to my GP have changed and I am getting the help I need.

    However,I think there must be a better way of getting our point across than these surveys.....I think they probably record the numbers they want for their statistics and unfortunately ignore anything we add on as has already been said.

  • Suffering too for too many decades, with it comes a clear picture how dr.'s work for their own interests, some one said ''It is difficult to get a man to understand something when his salary depends on not understanding it'. Dr.'s make a living by keeping us in a state of misery decade after decade SHAME ON THEM ! They do get away with murder time after time,in couple of hrs.another dr.'s appointment,am fed up fighting,no NRG anymore but just one more try i say and come back demoralised exhausted,and flabbergusted,,well good luck to all the fellow sufferers,,,,

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