Case Study Needed - Misdiagnosis

[lynmynott]

I have been approached by a well known radio show who is looking for a case study.

"We’ve spoken to a couple of people who’ve mentioned that people might mis-diagnose themselves with a thyroid illness (either think they have it when they don’t, or don’t think they have it when they do)"

Has this happened to anyone? If so, if you are willing to be interviewed, do let me know.

I have told her that it's more likely that patients are being misdiagnosed by their doctors because not all the tests have been done or that they are not tested or being prescribed T3.

If you fit this criteria send me an email: [e-mail]

[shaws Administrator]

I definitely didn't fit the criteria having knowledge of dysfunctions of the thyroid gland. If I heard 'hypothyroidism' it was meaningless.

Also the' doctors/specialists I saw had no idea either, despite their qualifications but I had a few 'diagnoses' but not the right one.

Even being discharged by the A&E after an overnight stay as as 'probably viral with a high cholesterol' when in actual fact I had a TSH of 100 one week before my own diagnosis requesting a blood test and I was bedridden.

[JGBH]

lynmynot,

With all due respect I really can't see the relevance of such a programme. WHY on earth should it be about patients misdiagnosing their hypothyroidism?? Patients do research, in despair, in trying to find the root cause for their debilitating symptoms which are totally ignored and dismissed by the so-called medical professionals! Such a programme might reinforce the misbelief that the symptoms are all in the patients' head and that they must all be hypochondriacs! What a disservice to patients who are so shabbily treated.

To me it looks like they are trying to dismiss YET again the serious symptoms patients experience. Surely it should be about case studies of GPs and endo's misdiagnoses of patients. That would give a clearer picture of what's happening throughout the country. Also by exposing the inability/unwillingness of doctors to diagnose hypothyroidism could help patients in getting the treatment they need and deserve. Indeed it might even help with the campaign to get the NHS to resume prescription of T3.

I really do not see the point in such a programme, perhaps you would enlighten us all. Wondering if other members would feel the same, or is it just me?

[shaws Administrator in reply to JGBH]

I think you're right - all the doctors do is look at a blood test result, if they take one, and pronounce you are 'normal' as your TSH and T4 are somewhere in the range.

I listened to a video yesterday and the doctor (with hypothyroidism) said that is all they learn in medical school. TSH and T4. They never learn or are knowledgeable about the clinical symptoms, even the most common ones and Dr Skinner said that patients are in a parlous situation due to the guidelines.

[lynmynott Partner Thyroid UK in reply to JGBH]

That's exactly what I was trying to steer her towards - the fact that doctors are misdiagnosing patients with other conditions when they really have hypothyroidism.

Having said that, people have come to me before telling me that they thought they had hypothyroidism and bought meds online which made them poorly when, in fact, if was B12 deficiency because the symptoms are similar.

[shaws Administrator in reply to lynmynott]

Yes deficiencies in vitamins can also cause symptoms. In the past a member put 81 I believe for B12! Is that not a red flag! Doctor ignores it.

[JGBH]

Hi lynmynot,

Thank you for replying.

However I still think the title is incorrect. I believe it is pointing a finger at patients for being "overzealous" to put it mildly (in doctors's speak = hypochondriac, all in the mind, have antidepressanst, that will solve your imaginary symptoms- sort of attitude we have all experienced) and therefore cannot see how this will help patients in getting the correct diagnosis in the first place by GPs and endos, then the correct treatment which most patients clearly do not get. As for Levothyroxine being "the gold standard treatment"... that is a sad and cruel joke! Sorry.

If I may say, the title for this case study would be more accurate and certainly more transparent if it read: "Misdiagnosis of hypothyroidism by medical professionals and lack of appropriate treatment leading desperate patients to research their condition in order to recover some quality of life". That is the crux of the matter.

If patients were diagnosed properly by knowledgeable medical professionals who do not only rely on old fashioned and inaccurate "guidelines" and poor methods of diagnosis (ticking boxes, the same for everyone when we are all different, avoiding doing proper tests rather than relying mostly on TSH and T4 alone), then given the correct form of treatment there would be NO need for patients to try finding ways to better health. Patients suffer incredible debilitating symptoms which are being ignored, this leads to on-going deteriorating health then death (premature death)... No doubt patients need to find answers when left ignored and untreated.

Finally, I must assure you this is not a personal issue, having no intention to upset you, but it is very important that patients are not being treated with disrespect (as is often the case) for seeking help in getting better when they are ignored and dismissed by the medical professions through lack of knowledge of condition of hypothyroidism and appropriate tests and treatment.

Because of this I do not think this study will do anything to make the media and doctors realise what impact undiagnosed and untreated hypothyroidism has on so many desperate patients and must reiterate it will NOT serve the patients' cause at all but do just the opposite that is for doctors to reinforce the fact that the symptoms are all in the patients' mind... and "let's put them all on antidepressants"... That is a scandal. I do feel very strongly about this situation... but where are all those people who suffer from hypothyroidism? Am amazed they have not responded...or are they feeling so bad they have capitulated and are prepared to accept anything even though it will not serve them well?

Best wishes.