We were called to a meeting by the chief executive of the NHS Trust i work for today, regarding an upcoming hospital inspection from the Care Quality Commission. The overall theme of the meeting was about nurses, midwives and care workers ensuring they provide the 'best care experience' to our patients and their families under the principles of Care Respect Responsibility and Communication. This included care our 'our own'.
I was once a patient of my own Trust. One visit to an endo, who i pinned my hopes of some effective treatment, but which resulted in the usual garb of " your depressed". Your continuing low levels of ft3 are "low but a stable normal" Discharged...end of care episode. The care was disgraceful.
This has troubled me greatly since along with the knowledge that most of the GP's working in the surrounding areas of the hospital , will only test TSH. I find it distressing that i talk to others who feel unwell and guide them but who wont fight and be their own advocate...their docs know it all and im a maverick.
Ultimately...who IS responsible for all this? Can i blame my endo when we know all docs are singing from the same song sheet from the training they receive? How much is she to blame? Should i be writing to the Trust to complain? Will it help or change anything or will it just make me feel better psychologically having off-loaded?
I still feel rubbish and am preparing myself to start NDT with my T3. After a very stressful few months my adrenals are shattered again so have upped my supplements. I have blagged a full panel of bloods off my GP as feel he at least owes me that (he doesnt know what to do with me). I will post again when the results come back.
I am also sorry to not be around much....i am letting apathy get the better of me again.......
I have decided to write to the GMC about my experience so far......I f anyone has any research papers which i can use to support my complaint...id be very grateful Hugs sent to all.... K x
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babycatcher7572
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Plus the fact that the BTA have about 4,500 members whilst Thyroiduk had more than 20,000 on HU within a couple of months. Unfortunately because HU changed their website apparently they cannot give individual numbers on each of the forums which is a pity.
I can't remember who it was, so can't credit them. It's from the Lancet and has some very interesting info on a range of thyroid disorders both common and rare and on which tests should be done.
I was under an endo when I was south and had continuos fup's. When I moved north east I saw an endo for a while at a Trust I chose, as I anticipated good continuing care, however, I then was discharged back to my GP. I have learnt that a percentage of endos are more focused on diabetes with thyroid as an add on. My way forward is to research, educate and encourage my GP, and I've chosen a newish GP who is more open to being presented supporting papers on my condition. I know it's not exactly the answer you were looking for ......however, I have worked within the health sector too. We need to pick who we can influence ......... x
NICE has produced a document which includes information about misleading TSH results and the importance of properly examining patients with suspected non-thyroidal patients:
Here is what it says about T4 to T3 conversion (or lack of):
'Total triiodothyronine and free triiodothyronine (FT3) concentrations usually decrease as a result of impaired tissue uptake of T4 and impaired conversion of T4 to T3. Total thyroxine and FT4 levels may also be outside the reference range.'
Although not a research paper, the info is from NICE - so the Trust (and GPs and endos in general) should at least be taking attention to the advice.
Recently there have been a lot of comments of Endo's and GP's and not getting much help or advice from either. Cities tend to have a university and a medical school and teaching hospital. Medical students starting their degree tend to have 2-3 years pre clinical studies taught in the main by scientists. Universities pay their lecturers less than medics at lecturer level but the facts are more likely to be accurate as these lecturers also do research within their area of expertese. As research experts they are more open to suggestions and routinely read mountains of literature. After students safely negotiate their 2nd MB.CHB and then move more to the confines of the teaching hospitals where they meet patients, consultants and the smaller subjects of medicine, the earlier subjects being Physiology, Anatomy and Biochemistry. So at this stage the endocrinology input is probably given them by a consultant who is more interested in diabetics. It is these people who are instrumental in giving the GP's of the future their grounding and why your GP won't go against the decision of the local Endo. I think medical schools teach students many things but possibly not to have a mind or opinion of their own. Short of having a department suffering with thyroid problems I can't see this changing in the short term
Suggest you write the letter saying exactly what you want to say, then look at it and decide which bits need backing up with research..... For example, if you put in the letter
'The tsh limit is all countries is lower than the uk'. Then this statement would need backing up. So what you could do, is come on here and ask if anyone has evidence that the tsh threshold is lower in other countries.
That way your letter will say what you rely feel and you will have the relevant bits of research. Otherwise you could follow all the references and lose sight of what you are trying to say, and it could take forever.
Please do not waste your energy on the GMC. I have some experience in this regard. They are just a defence union for doctors, they have no interest in patient care. No one is accountable for UK NHS failures, not the pcts, not the dept of health, no one. Even the ombudsman defends them. I have exhausted the whole procedure extensively. I wasted so mucg energy when i should just have used it to start self medicating earlier.
You would be better off using your precious energy to educate and warn other sufferers so that they can help themselves. In my humble opinion your MP or the media would be a better bet for raising awareness.
The gmc has been known to allow padophile doctors to continue working. I personally had botched surgery by a rogue surgeon who - it later emerged - allowed a trainee to practice on me. No one cares, no one is accountable. The gmc said it was my own fault, these things happen, etc. I also complained about nhs gps missing diagnoses and putting me at risk, again, denial all round - even in the face of irrefutable evidence.
This "industry" has more sociopaths and misogynists working in it than any other - in my personal opinion and based on my personal experience.
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While the iron is hot may I suggest that you have a look at the thread 'let's take some action' (which may be displayed in the blue 'read next' box below). I've been following up on the debate in the House about thyroidism and poor care led by Caroline Spelman, MP, who seems keen to push for better care for thyroid sufferers. Do write to your MP for onward transmission to the Minister, Jane Ellison, mentioning the correspondence in that thread to date and citing your own experiences.
I so agree with Bluedoffodil!! My Graves disease went undiagnosed for 6 years; it affected my brain very badly so GP dismissed all my physical symptoms as "all psychological"; he didn't even bother to do any blood tests at all. This was even though (I have since seen in my medical notes) a previous GP, who did order TFTs, which came back "normal", had noted "visible goitre! I lost all interest in everything, all motivation & sank into a deep depression, so much so that after 3 years I wanted to end it all and took a massive overdose. Somehow I survived but it was more than another 2 years before a concerned hypnotherapist insisted I should get a 2nd opinion. The GP I then saw ordered a whole raft of blood tests, when my TSH was found to be <0.05, FT4 was 82.9(range 9-23) & FT3 was 27.1 (range3.5-6.5)!!
It took a long while but once my brain cleared after treatment (RAI, which I now know to my cost to have been over-aggressive & unnecessary; I have been physically very unwell but luckily last year found Dr. P.), I complained to the GMC. Did they care that my life had been ruined & wasted for all those years & I could have died?? Not at all!!
All complaining does is cause stress and a raised blood pressure!
I agree with someone else that has said GMC is a waste of time. What I do find interesting is AmandaK post about NICE. I pray for the day a savvy journalist who falls foul of the NHS cos they have Thyroid issues takes the Thyroid scandal into mainstream publicity and exposes Big Pharma corruption & NHS scandal of mistreatment of men and women with thyroid disease. . Not that I would wish thyroid probs on anyone.
Hi !..Can I not just wish it upon my endos....just for a year....and see if the symptoms they experience are still classed 'vague; and 'non descript' ....oh pretty pleeeeeaaasse!!! I think I already in my heart I know complaining will be fruitless but im bursting with resentment and frustration and im letting it eat me up! I might try the MP route tho
I understand perfectly babycatcher7572 I know exactly how you feel and it is human to feel resentment when you have suffered because of doctors incompetence ,negligence and unwillingness to do the best for their patient .when I feel resentment rising I try to remember what Nelson Mandela said in his book "resentment is like drinking a poison and then hoping it will kill your enemies"
So it is a waste of energy. I do think as JLTsirium that what is needed is a good investigative journalist that is willing to taken on the establishment BTF GMC but maybe it needs more than one brave person may be more people need to be involved.
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