Just saw this and thought both that it is interesting it is being done. And, secondly, wondered if any would be willing to take part.
I've scan read the information about the study and it appears that there is no geographical limit (please reply to let me know if I am wrong!) - just that you need to be able to connect to the internet using Microsoft Teams. (That operates on at least Windows and MacOS and possibly other options.)
Study to help patients manage their underactive thyroid
Wednesday 1 November 2023
People with an underactive thyroid are being sought by a Black Country scientist who is leading a research study to try to improve patients’ and Doctors’ experiences of monitoring the condition.
James Pethick is a Principal Clinical Scientist with Black Country Pathology Services (BCPS) which comprises the four pathology laboratories from Walsall Healthcare NHS Trust, The Royal Wolverhampton NHS Trust, The Dudley Group NHS Foundation Trust and Sandwell and West Birmingham NHS Trust (SWBH).
He is Principal Investigator on the study: “What are patients’ and Doctors’ perceptions of self-management of primary hypothyroidism and the barriers and facilitators to different types of self-management.”
Primary hypothyroidism affects around four per cent of people in the UK and is more common in women than men. It means patients have an underactive thyroid gland, the small gland found in the neck, which does not produce enough hormones; this can slow many organs in the body.
Symptoms include tiredness, weight gain, depression and loss of appetite and there are several causes including autoimmune disease and mineral deficiency. It can also be hereditary or sparked by a viral illness.
James, who is based at City Hospital with SWBH, is working with the University of Manchester as part of his professional doctorate qualification on the study, which aims to recruit up to 50 participants.
He said: “The study is aimed at people who have had hypothyroidism for at least two years which is treated with levothyroxine, or other thyroid hormone replacement medication.
“It will focus on people’s experience of monitoring their condition and the clinical team here at BCPS would like to know more about this, as well as hear from Doctors in primary care. Research is vital to help us find out what patients want and whether we can work in partnership, with medical experts, to provide this.
“This is my first study, and I am also working with relevant organisations to help us collectively gain a better understanding of what it is like to live with this condition and where improvements may be possible.”
He said: “The study is aimed at people who have had hypothyroidism for at least two years which is treated with levothyroxine, or other thyroid hormone replacement medication .
Except when asked which medications you take it just gives you T4 options!
The information relating to this study focuses on levothyroxine without mentioning liothyronine because the NICE guidelines for thyroid disease assessment and management recommend levothyroxine as the first line treatment and for doctors not to offer routine combination treatment.
So, your query has already highlighted some of the real-world challenges experienced by people managing hypothyroidism. Thank you, and I would be very grateful to hear more about your experience. There is a question in the survey relating to medication. Liothyronine isn’t mentioned, but you could add this to the other option.
Oh wow - full marks to them for a speedy reply. Alas I'm never quite suitable to participate in surveys these days but hopefully some good may come out of it☹️
A study involving only 50 PARTIPANTS! My suggestion would be for him to ask the whole of Thyroid UK forum members to participate in order to get a real feeling for how many many people have suffered from thyroid disease and are still suffering. In a nutshell, until GP's and endos have proper training in the subject (preferably by patients) small studies will remain inconsequential.
Oops - Partipants was obviously a typo but maybe that sums up what I already think about such a small survey. Unfortunately I'm not very technie and only wish I were - calling on TiggerMe , Regenallotment and anyone else who is proficient in the computing world.
Should you contact him, perhaps suggest he joins HU and the thyroid community himself?
I'm not techie enough to get involved with this, but agree with you that 50 participants will only give him a snapshot so small it will be almost invisible.
Sadly I'm not technie enough either 1tuppence but I'm sure there are others who are and it seems such a waste of an opportunity to tell them exactly like it really is.
Perhaps I'll email him and suggest he joins this forum....such a wealth of info already here for him, and continuing on... and on.
It's wonderful to me that at last someone seems to be seriously interested in finding out how folk with hypothyroidism feel and deal with what we're faced with. We already have to self monitor, pay for blood tests and find treatments to help us, as medics have so little interest/knowledge of the importance of vitamins and nutrition , and are told to concentrate on TSH which tells them virtually nothing...OH! I could go on and on.....
Having said the above, and having read the linked info, there's a part of me wondering if this research has a "cost cutting" edge to it..
Very much tempted to agree about cost cutting. AI involvement too but since our doctor benefactors seem to be so useless, could that be an actual improvement?
Unfortunately, AI is only as good as those putting the information parameters in… so if the programmer is ‘programmed’ a certain way, the program won’t be any better… ‘sh*t in, sh*t out’ sort of thing… 🫤
Oh, I thought that was what we were already getting. It seems also that whomever the NHS employ to do their IT systems just rubs their hands and let the cash roll in. Some group of civil servants contracting the work with no idea what it should contain. Medical staff who don’t know what’s needed either. Look at the way they run their surgeries, take their notes, organise their answering machine service, too much power to admin staff who have even less knowledge than they do. I guess they will be under even more stress, unable to have any power to change anything but stuck there on the frontline. In a Newcastle hospital recently, someone found a cache of letters that should have been sent to GPs and patients over a period of about five years. What could be the knock on effects? I certainly visited A&E over the years in question. It’s downright scary when you reach that point in your life when you need them and we have been paying our taxes for their fat salaries for years. From the government down. False targets etc. I could go on.
From attendance at today's focus group as part of this research, it certainly didn't seem like a cost cutting exercise. James Pethick was extremely interested when the group were all for having hypothyroidism patches which measures our thyroid hormone levels fT3 and fT4 and dispenses the appropriate amount of medication whether T4 or T3. I did say that it was with the caveat that the medication was dispensed until resolution of symptoms, not until our lab results were 'in range'. I don't think I said it this eloquently though.
You just see so many clips of people who can't cope with the mute button 🙃 but I'm sure it's idiot proof really... I've just managed to dodge it and covid thus far 😁
A focus group might be hilarious trying to work out who else is from here 🕵️♀️ and who they could be
There you go with "Techie speak" and I'm lost. I'm a "pen and paper and landline person" but hats off to you who can do techie.....and thank you for giving it a go.
The setup required immediately disenfranchises (if that's the correct term) a proportion of potential participants. The NHS doesn't seem to mind the expense of snail mail, so it could be possible to send invitations to a selection of patients, and avoid the selection bias of too many from this fine community, and design the study so tech gear and familiarity with its use is not a requirement.
James was aware of his selection bias from so many of the participants being from healthunlocked. He surmised that this was a good thing as we were probably the target group for home blood testing and shared monitoring between patient and GP (which is what seemed to me to be one of the thoughts behind the survey).
I’m surprised to read the 4% of the uk suffer from primary hypothyroidism. Surely it’s much higher. 🤔 Since I found out about my issues I’ve discovered at least 6 people I know though work and my volunteering job have it and a lot of them have had their thyroid removed completely, it must be a lot more common than 4%!
Edit: just to add I've spent 4 hours (😂) stewing on the fact that despite presenting with symptoms for 2 years AND over-range TSH they still classed me as 'subclinical'.
I think I'm still marked up as subclinical as my TSH was around 7.5 when I started treatment.... I wouldn't let 'sub' hold you back the fact is their classification is off... you are on the treatment, fill in the form 🤗
Historically I made the cut of formal diagnosis of Hypothyroidism cos of a TSH of 4.8 ( medical profession would laugh at this level these days!) Following GP treatment for a year my TSH was7. 6. Clearly he thought TSH needed to go up not down... Bless! I can laugh about it now back then I was close to being out of a job, career probably home due to my GPs 'excellant' care. Saved by going private.Think this novice researcher may just find hes bitten off more than he can chew. Never mind thesis, he could write a doctorate on it! 🤣😂
Maybe I shouldn't confuse him by throwing NDT into the mix as well..... besides which I'm currently dealing with an iodine block so he might just get very irate GPs telling him I'm bonkers cos I won't let them refer me to my local endocrinology dept!!
This sparked my attention as this is rarely mentioned in the literature about hypothyroidism, nor in medical articles (as far as I'm aware).
Given the rise in Long Covid (and the known impaired T3 levels in ME/CFS and other chronic illnesses), then maybe the study might highlight the need for full thyroid testing - including T3 - for those adversely affected by viral illnesses.
I'm hoping we can highlight that everyone is let down by the current testing and we (the enlightened bad converters) have all massively improved since private testing and dosing
Also the importance of increased Vit and Min levels
A viral illness could well be an important factor.
However we have difficulties in several areas of investigation and understanding:
Why does a virus cause a thyroid issue in some - but not others?
Which viruses cause thyroid issues?
Does the virus just precipitate what would eventually have happened anyway?
The Epstein–Barr virus (EBV) has often been suggested as a cause. But even in someone who has had EBV, how can we know it was a factor? Something else, whether another virus or a non-viral issue could have been the cause for them.
This is all made ever more difficult by the time between EBV (or other viral) infection and any thyroid issue being identified.
And what if the biggest cause is a combination of environmental factors along with a virus - with either on their own not being that significant?
Very much needs investigation but it is very far from trivial.
Yes, all very valid points and potentially the subject of its own study. It was when I came under the care of Dr M three years ago that my thyroid status was taken seriously by a member of the medical profession. Dr M identified that it was highly likely I'd had EBV, which initiated the ME (but which wasn't tested at the time), stated that my thyroid status suggested hypothyroidism (although within range according to the NHS) and she advocated Metavive. Since taking this (and antioxidant and other supplements) my life has been transformed.
I'm sorry if I've sent the discussion on a tangent, but it did seem relevant, given that the study recognises that hypothyroidism can develop after a viral illness.
Maybe but I was diagnosed with CFS/ME first but no viral illness with it or preceeded it but specialist said my Hypothyroidism was a consequence not a cause. I think it's called get out clause.
Does the viral illness have to be even noticeable?
Could it be that we could have a very minor cold, something that comes out as just an ignorable snuffle and feeling tired for a few hours? Something that is so minor we just forget about it entirely.
It's a good point. On that basis though wouldn't you expect there to be a much higher percentage of the population being triggered as I don't know anyone who hasn't had a cold etc in their life?I think for me Hypothyroidism was triggered eventually from my body being overloaded with a lot of stress for a long period of time. I already had an another autoimmune condition which has strong links to Hypothyroidism. The unremitting stress levels I believe was a tipping point perhaps praying on a weakness in my system. . Completely unproved of course! 😂
Seems very reasonable to start by assuming that viruses which make us very ill are the ones which will have consequences. And I'm not saying that isn't true in general.
But viruses can do some odd things.
Think chicken pox - which might have been suffered fifty years ago and almost totally forgotten. Yet shingles can appear due to reactivation.
And chicken pox, despite being unpleasant, is usually regarded as being fairly mild.
A total of 287 patients were included in the study, of which 214 (74.6%) demonstrated normal thyroid function. Of those with abnormal thyroid tests, 58 (20.2%) showed lab tests consistent with hyperthyroidism (low TSH) and 15 (5.2%) with hypothyroidism (high TSH). Of those with a low TSH, most were mildly low, but 31 of 58 patients (53%) had elevated FreeT4 levels indicating overt hyperthyroidism. In addition, 10 patients with overt hyperthyroidism had atrial fibrillation, a known heart complication of hyperthyroidism. TSH was lower with increasing age and higher IL-6 levels. Lower death rates were seen in patients with normal TSH levels.
Overall, the results of this study indicated that abnormal thyroid function is common in patients with COVID-19, particularly hyperthyroidism, and that TSH suppression appears to be associated with higher levels of the inflammatory cytokine IL-6. Although more research is needed, these investigators suggest that COVID-19 associated with systemic immune activation may possibly cause thyroid inflammation and result in hyperthyroidism.
So basically they were only testing TSH and T4, and would have missed those patients with low T3. I suspect that usual lab testing rules would have been applied and they would only test fT4 if TSH was out of range, and would only test fT3 if both TSH and fT4 were out of range, which means they would have missed all the people who had hypothyroidism with 'normal' TSH and/or 'normal' fT4.
Also, what did they deem to be 'normal' TSH and 'normal' fT4? Normal for that person? Or within range? TSH range is usually around 0.4-4.9, yet the majority of people are around 1-1.5. So there is a big gap between 1.5-4.9 for people to fall down and not be classed as hypothyroid.
Signed up then had to email him to add that I also take Liothyronine, bet his inbox is about ready to crash. Such a small study isn't even a snapshot of the total really though is it? Bet there's more in our village and surrounding area.
Your research project into hypothyroidism was posted onto a Thyroid Forum on HealthUnlocked.
This site is recognised and recommended by NHS on their own website.
Having followed the links and read about your research, although it sounds so positive to have someone like yourself do this fundamentally important research, having a participant group limited to 50 will also limit the responses you will get.
The vast number of people 's experiences with first of all getting diagnosed, and then treatment issues, will pass you by
With the above in mind, and to give yourself the most comprehensive overview, would you consider becoming a member of HealthUnlocked, and join the Thyroid forum?
The above is a copy of the email I have sent to James.
Oh well done 1tuppence - that was an absolutely brilliant idea! Let's hope that he is open-minded enough to give it a whirl unlike the private endo I saw on the TUK list who advised me to stay off the forum. Thank you for doing this as my brain is like cotton wool at the moment👏
Thank you Delgor. Be wonderful if more contact him with the same message? Hope you find "the clear thinking space" again soon. I know well how horrid that fuzziness is. Hugs xx PS that endo you saw...was he NHS as well? If so he obviously isn't aware the NHS site recommends this Thyroid forum on HU. Sadly, he sounds a waste of your good money, let alone your valuable time and well being.
Thanks for the hug - it's much appreciated! Yes I aim to contact him but not today. No the private endo wasn't NHS as well and was very expensve (I was feeling desperate) but it was all over by the second zoom when I realised he was a pompous ass who wasn't really interested in people - aah!
samaja - no I haven't done that as I presumed that somebody must have thought him good for him to have been put on the list in the first place but I'm now pleased that I've heard from somebody else who had the same opinion as me.
In another group I am in the admins decided to list a doctor as a possible group 'recommendation' only after the recommending member of the group worked with the medical professional for at least a year so could have checked them out more thoroughly than just during one visit or two. Maybe TUK should adopt a similar policy?
This forum and its admins/moderators does not decide who is on the list. That is managed wholly by Thyroid UK. Best to let them know of any opinions and suggestions you might have.
There is also the problem that few get more than two endocrinologist appointments ever - let alone within a year.
I live in the West Midlands and have signed up to attend in person. Hope I make it onto the survey, currently on levo only but will be undergoing tests very soon, saw an Endocrinologist who will prescribe T3 if necessary.
I’m a hypo novice, quietly observing this forum for years and then recently seeking advice. Everyone is just so helpful and empowered me for my recent consultation.
I’m lucky to be able to attend in person but it’s also so very important. I want to be ‘seen’ as a real person, not a virtual patient, to look them in the eye and explain the everyday grind of living with hypothyroidism.
Totally agree, 50 people on levo only is not enough!
“It will focus on people’s experience of monitoring their condition and the clinical team here at BCPS would like to know more about this, as well as hear from Doctors in primary care. Research is vital to help us find out what patients want and whether we can work in partnership, with medical experts, to provide this."
Just ask... We need home finger prick testing for T4 and T3, similar to a glucometer, with immediate results, and legitimate OTC thyroid replacement meds which are safer than aspirin or acetaminophen.
Am just wondering if this piece if research is aimed at finding information out so a model can be developed for an AI to diagnose and manage Hypothyroidism in patients?
'Ultimately, the research team would like to produce a system where patients can self-monitor their primary hypothyroidism through NHS laboratory provision of at home sample collection kits, analysis and results reporting to directly to patients.'
Yes to sample collection kits (possibly becuase I never have luck with anything finger prick) as long as they are not TSH only.
Another possible pitfall for them is to understand that this kind of system really only works well for levo becuase once you are on any T3 labs become of limited use in montoring the condition and certainly the analysis and results reporting as is currently done by labs and doctors who don't understand how T3 works and panic at supressed TSH and low T4 is not fit for purpose.
It seems to me that somebody somewhere has decided there is a great deal of money to be made (and saved) with people self testing under mainstream services.
If nothing else, people who have realised there are issues, and have bothered to seek out and join groups and forums, are likely to have better awareness than those who have simply followed GP and not had any further contact with other patients, etc.
I did have a brief chat with him, and said how the blood tests are flawed, poor care and understanding, that they don’t routinely test t3 and basically what a nightmare it all is.. 🙌 oh and that I don’t know what I’d have done without patient support groups..and no choice but to seek help outside the nhs- he was still happy for me to be in the focus group 😄
I too would be apprehensive. Quite a natural reaction to an unusual situation.
But reassure yourself that there is no consequence like there can be in our usual interactions with medicine! Like doses being changed, or future appointment cancelled.
I did my research meeting yesterday (11th).I thought it went well, I think only 5 of the 6-7 made it onto the call. 4 ladies and myself. A reasonable cross section of experience. It saddened me that some weren't even getting annual checks. Only 2 of us had seen an endochronoligist. Some had never had T3 tested other than privately.
I thought and hope it came across strongly that there is a desperate need for education of health professionals and better patient information at time of diagnosis.
From the point of view of the research I said I would be happy to be more involved in my treatment (thanks in no small part to spending years on this site), but it wasn't for everyone. But it came back to lack of GP knowledge on thyroid would be the problem.
I'll be easy to spot. I expect I'll be the only one in an FFP3 mask. Hope it's not too off putting for the other people in the focus group, and you'll be able to hear ok.
Thanks for the address etc, I’m in Walsall, only about 30 minutes away but I’ll give myself plenty of time because hospital parking can be so problematic.
Regarding the mask, yes you’ll be easy to spot and I hope you’re ok.
Hi, I'm the other side of Birmingham, so a nightmare travel wise. I'm fine, I just mustn't catch Covid-19, hence the mask. Hope you're OK. Sorry to hear your parents have been sick.
I’ve been running around like a headless chicken for months and I know it’s so bad for my health but what do you do?
Early October my son had a new ligament in his knee, a couple of weeks later my husband had a total knee replacement, 10 days later my mom fell, breaking her collarbone, hip and elbow. She’s been in a care facility since early November and my 85 year old dad (with dementia) has been home alone and then developed pneumonia! Throw in Christmas and regular home life and I honestly don’t know how I’ve coped. Just waiting at Walsall Manor hospital for bloods!
Thank you. My husband and sons ops were needed but the dates were planned. What you can’t plan for are accidents and infections. I’m just so thankful that everyone is on the mend 🙏
Well done for managing to use Teams! He had only got 3 people wanting to do it in person. I said I'd do it too, so that the in person focus group would run.
It is funny trying not to use each others forum name and seeing the real person…@artistapple and I played that game 😁… poor chap has been well and truly infiltrated by us 😏
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