Elisha Hussain, a health psychology master's student at Birmingham City University is undertaking some research to find out what the lived experiences are of people diagnosed with thyroid disease.
She needs participants who are over 18, have had a diagnosis of hyperthyroidism or hypothyroidism and who have not had a diagnosis of Graves' disease or Hashimoto's disease.
If you would like more information or would like to participate please contact Elisha at elisha.hussain@mail.bcu.ac.uk
I think excluding people with Hashimoto and Graves shows limited understanding of the thyroid issues by this student... Also hypo and hyper experiences will be very different, I wouldn’t put it all into one basket under thyroid dysfunction. Just my personal opinion - I am a researcher in my professional career.
Have to say that surprised me too.
I might email her and ask why she excluded Hashi and Graves? There is also the thought that just because someone does not have those diagnosis does not mean they don’t have those conditions. We all know how difficult it is to get a diagnosis of anything and how little Dr’s look to identify exact diagnosis. My record shows ‘Acquired Hypothyroidism’ as if I went out and bought it or caught it! Antibodies 40 years ago, that were not identified on my record, and non shown since.
I’m considering Hypo Graves at the min but Endo won’t test the right antibodies, thought he was, asked for specific tests, the bog standard ones were done. Waste of time and money.
I did double check with her that this is what she is doing. She has ethical approval. It's not how I would do it either...
I wonder what her aim is? I have emailed her. Will see if she replies.
Please let us know what she says if she replies.
humanbean Elisha replied as follows:
"In terms of the exclusion of the diagnoses this has been used as an exclusion criteria for firstly the benefits of a clear analysis. As I am exploring lived experiences of hypo and hyperthyroidism alone I am not exploring causal diseases rather keeping the focus on the experience of the thyroidism alone. As I am exploring both types of thyroid dysfunction by including further diagnoses may affect the results as having 2 diagnoses may bring about differing experiences that just say having hyperthyroidism alone. I’m terms of ensuring non-diagnosis I am going off disclosure alone.”
I think I understand her reasons - not wanting too many variables. I did point our that the current poor diagnosis protocols that people might have undiagnosed Hashimoto’s or Graves. I myself have ‘Acquired Hypo’ which means they don’t know what I have. Could originally have been Hashi’s or Graves, or both.
However, it is good that someone is showing an interest in the lived experience of TD - more studies/research like this might start to show the real human picture.
I'm very dubious that she'll find many (or any) people with two diagnoses i.e. hyperthyroidism without Graves' AND hypothyroidism without Hashi's. I struggle to imagine how that could even arise.
Hypothyroidism can't "turn into" hyperthyroidism for a start, so they must be looking for people who had hyperthyroidism turning into hypothyroidism. This can happen - but only when the sufferer has Hashi's - and those people are excluded.
The researcher is looking for lived experiences. But I'm sure her questionnaires and responses will be considered as part of a proof of concept to stop treating people who have thyroid disease without antibodies, and turning that into ME or CFS or depression or anxiety or hypochondria or somatic symptom disorder or bodily distress disorder or any others that are considered to be evidence of mental illness.
Me!
And I have been in contact to volunteer. She seems on the ball and friendly.
I never knew you were hyperthyroid before becoming hypothyroid. Have you worked out how it happened?
I hope she's studied this TUK forum for patient's perspectives!
In one fell swoop she has eliminated patients with either Graves or Hashimoto's. In doing so she has eliminated those with some of the most challenging conditions and the most challenging "lived experiences",...this, in turn, eliminates the study of some of the most challenging psychological issues of thyroid dysfunction. I gather that is what she's aiming to investigate....maybe not!
Will she be able to extrapolate any useful data from this narrow study that will point to the detrimental psychological impact that thyroid dysfunction can have on patients... to the extent that it has led some to consider - or at worst commit - suicide?
There appears to be no depth to this Masters Health Psychology study.
I'm not really sure what she is trying to achieve ....it looks as if she needs more guidance.
Apologises if I'm talking out of turn,......like all of us here I feel the current state of diagnoses and treatments meted out for thyroid disease is beyond appalling and here we have a further misunderstanding of the disease. Not, I think, specifically that of the student!
I agree with you. When I was formulating my masters thesis I had great support from my mentor who would guide and help me formulate the topic. I wonder if she had such help. If not- fair enough, she’s not a med student. If she did and that’s what they came up with - then wow. No wonder thyroid treatment is appalling in this country.
I was all set to help but the conditions are too restrictive....
I imagine there would not be many UK patients WITH a diagnosis of Hashimoto's thyroiditis .I've never come across a UK GP using that term.
I was only told verbally by the diagnosing GP that "your immune system is attacking your thyroid gland" And my notes only ever refer to 'hypothyroidism' although my raised TPOab are recorded( buried so deep in the bowels of my medical notes that i suspect my current GP may not even be aware they were ever that high))
I think i probably have Ord's, based on never having an obvious goitre. But no GP has ever so much as felt my thyroid gland in17 yrs let alone done an ultrasound.
It would be interesting to know what the questions asked in the interview turn out to be.
I'm afraid the fact that its a study by a Psychology masters student ring's a few alarm bells for me.
I am pleased to hear of any research to help thyroid patient's, but would be more trusting of Clinical research done by clinical specialists rather than psychologists.
Perhaps she's chosen this relatively small group because those unfortunates who have one or the other problem are simply regarded as a nuisance to doctors. Those without a thyroid and no specific diagnosis, such as me with eg no Hashi, Cancer or Graves, are simply lumped in with those who do have a specific medical problem as these.
I have probably the simplest form of "Hypothyroidism" that can exist and THE simplest form of solution to that problem that does or can ever exist short of a thyroid transplant. I am not Hypothyroid, I have Athyreosis, yet I am refused NDT for any reason the CCG can possibly think of, I am offered no genuine truths whatsoever by them to support their refusal, I am offered lies and now even an excuse that I can only vaguely understand which, if true, could be given as a reason to refuse each and every application for EVERY blacklisted medication by way of IFR in the entire County in which I live.
When I am refused NDT, there is probably no way at all in which anybody with any complications, such as already mentioned, is likely to get it.
Perhaps an additional piece of research would open the door to me and similar, making it possible to use this to open the door to those offered no hope to their debilitating conditions.
This situation makes me cry from the sheer insanity of allowing many thousands of us live with unnecessary health problems that could easily be solved, especially when I have also developed an unrelated health problem and have been forced to stop taking a synthetic drug that was helping but also causing breathing problems, perhaps related to the NDT I now take, that could very easily have caused Pneumonia once again.
I doubt she has such deep understanding of thyroid patients nuances to have considered that given she’s a psychology student. I believe it’s from her lack of knowledge.
Well, I have no idea what thyroid disorders I may be lumped in with!
I have a thyroid....no idea what state it's in. Never been scanned. It really doesn't matter anymore!
GP decided "hypothyroid" over 20 years ago, after decades of "iffy" health and after I finally requested a thyroid test!
Continued to feel increasingly worse over the subsequent years
Fall back diagnoses of Fibro and ME etc....many useless tests and treatments.....never convinced!
After much personal research it turns out I have a form of thyroid hormone resistance (RTH).
Endo didn't know what was wrong with me " difficult to diagnose" he said.
Not incisive!
He didn't look so he didn't find!
Not sure he had a clue anyway!
He wouldn't entertain the possibility of RTH when I raised it.....no!
Yet, he could not explain why I can tolerate a supraphysiological dose of T3 (I knew it can an only be tolerated with RTH)...he tried spinning a yarn about getting into a car and possibly having a crash. I think what he was trying to say is....you pay your money and you take your chance!!
He concluded that I should just do as I was doing.
I need T3, lots of it, and the only thing he might consider was LT4
I now self medicate with T3 which I buy......
NHS would baulk at the idea of paying for it.
No, they say ....levothyroxine is a suitable treatment
I know, I'm an odd bod... medics don't want to know that I ( and most likely many others) have a rare condition.
I think I'm probably filed , as you suggest, in the box - " Nuisance"
Thyroid disease is a complex issue as most of Us here know.
I would question the people who sanctioned this narrow investigation....particularly at Master's level. Not the student who probably has scant knowledge of thyroid disease.
Sorry, I'm ranting again....I agree that our treatment is sheer insanity!
Without TUK I doubt I'd be fit to write this rant!
Hope you find a way forward
Can I make a prediction?
The researcher probably wants to exclude people with Graves' and Hashi's because the NHS wants to stop treating people with no thyroid antibodies, and will classify such people as suffering from Chronic Fatigue Syndrome (CFS) rather than a thyroid problem. Such people can then be ignored because people with CFS are deemed to be mentally ill and the only treatment they need is Cognitive Behavioural Therapy.
Have you perchance met the same psychologists as me, and then read the PACE Trial . I'll bet 50 pence that the study criteria were suggested by the professor not the student. because without the antibodies its harder to prove it's a thyroid problem . Prepare to start seeing results of studies showing CBT or similar 'helps' sub clinical hypo ,followed by increased difficulty getting NHS to test antibodies. Evidence Based Medicine in action before your eyes.
Actually CBT is really effective on thyroid patients .... really effective at turning trusting folk into cynical nuisances like me.
I've never met any psychologists in recent years. I haven't actually read the Pace trial but I've read lots of stuff about it and read some of the rebuttals of it, and descriptions of how bad a piece of biased research it was. I've also read many of David Tuller's blog posts on ME.
I'm also aware of the efforts being made to psychologise lots of diseases so that the patients can be blamed, denied actual treatment and then end up being sent to CBT which is utterly useless.
Prepare to start seeing results of studies showing CBT or similar 'helps' sub clinical hypo ,followed by increased difficulty getting NHS to test antibodies.
That was the kind of thing I meant earlier with my previous post.
Oh, I've just remembered something. I was sent to see a CBT therapist about 10 years ago when I was suffering from severe depression. He was utterly useless and completely incompetent. I would have been better off staying at home. In the end I found my own cures for my depression over a period of years, with absolutely zero help from the medical profession.
This blog on the subject of CBT and IAPT (Improving Access to Psychological Therapies) is worth reading, although it is very depressing, knowing that this is the future of medicine and the NHS in the UK.
I haven't read it , but i'll bet you another 50 pence it foretells a new modified CBT, that's not called CBT, delivered by people who arn't called psychologists.
I must admit that having been there and bought the PACE t-shirt , i try to stay away from psychologists, especially if they are doing research.
Very wise move!
Regarding CBT I think people assume that it is some kind of monolithic treatment that is the same for everyone and has the same aims for everyone. But it isn't. CBT for people suffering from cancer is not the same as CBT for people with depression or anxiety, and is not the same for people suffering from ME/CFS.
I think a lot of people assume all CBT is just "having a nice chat" with someone. But it isn't.
Fascinating Blog by Dr
As i thought , cheap version of CBT delivered by people who are paid less than psychologists, with results scored by tick box, with practitioners under pressure to show 'improvement' in outcome.
Modified tactics to 'PACE', which 'moved the goalposts' to show 'improvement'
Oh I hope not! But I do wonder and not sure I can trust psychologists - have two in family would not trust as far as could throw.
But maybe more reason to partake? That said it is all about the questions posed. Wont know till too late maybe?
Isn’t it very sad and depressing, how cynical we all are - the result of life time experiences of being ignored, dismissed and deemed depressed or hypochondriacs. Even when we have previously been proven right!
It is sad - but from my point of view I felt worse when I got my hopes up that a doctor might actually believe me about something I had going wrong with me and then getting my hopes continually dashed. Being cynical saves me from that.
What's worse than your Doctor not believing you?
Your Doctor pretending to believe you !
To quote Walter Scott re medics dealing with thyroid disease...
"Oh what a tangled web we weave, when first we practise to deceive".
Just about sums it up!
Hi Lynn, I'm new here. Can you tell me how you managed to get your doctor to increase your dosage as mine refuses to listen to me despite my symptoms. I'm really at my wits end. I've gone from a size 14 to size 20 in 3 years, have every symptom in the book and he still won't increase my dose back to the 100mcg I was on when I returned from the US.
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