Sometimes I despair

[diogenes]

Occasionally I look at the US website UptoDate regarding thyroid diagnosis and treatment. This is to see if any of the recent advances in knowledge have been taken on and added to the guidance for medics in the USA. I saw the latest updated November 17, 2017. If this has been updated I hate to think what was recommended earlier. It trots out the same bad advice and ignorance as before as if nobody had made any progress whatever in the meantime. There really is a huge intellectual gap between scientists doing basic careful research on thyroid matters and practicing MDs. No meeting of minds whatsoever.

[shaws Administrator]

Dr Lowe would have agreed with you and the reason he resigned (I think from his organisations) was so that he wouldn't be hounded due to his views and be struck off and could carrying on advising patients. He also said that it is due to corruption by Big Pharma paying to get their products used and used alone. Excerpt:

Let’s start off with this quote from his website: “I learned early during the last 16 years that the endocrinology specialty’s judgment is corrupted by financial inducements from drug companies that profit from the TSH [thyrotropin] test and T4 [thyroxine] replacement.” You’re really taking on The Endocrine Society here. Why?

The simple reason for my taking on the endocrine community is that my mission in life is to relieve as much human suffering as I can. We have long had ample research evidence that T4 replacement simply doesn’t work for and is harmful for too many patients. Consider a large community study2 of T4 replacement conducted in 2002 in England. Hundreds of patients from numerous clinics taking T4 replacement were matched with other patients who were not hypothyroid and not taking thyroid hormone products. The noteworthy results of this study were 3-fold: a hair short of 50% of the hypothyroid patients on T4 replacement still suffered from hypothyroid symptoms, they had a significantly higher incidence of 5 potentially fatal diseases associated with underregulation with thyroid hormone, and patients on T4 replacement had to take more drugs than did the matched controls to lower hypothyroid symptoms and better control other diseases that afflicted only the hypothyroid patients.

We have many such studies that bring into question the safety and effectiveness of T4 replacement for many hypothyroid patients. Whenever such studies are published, endocrinologists often resort to warped thinking to encourage hypothyroid patients to continuing T4 replacement as the only preferable approach. To me, it’s obvious that something other than the scientific findings drive these endocrinologists to advocate the use of only T4 replacement, despite its lack of safety and confirmed harm.

recoveringwitht3.com/blog/d...

[nightingale-56]

Is it not possible for Scientists to give Lectures to Trainee MDs. It would be really good to get some Doctors to attend Conferences such as the TUK ones. What a lot they could learn.

[shaws Administrator in reply to nightingale-56]

It should be compulsory especially if the trainee doctors want to specialise. They could get plenty of offers from members who have either hypo or hyper or remain undiagnosed.

[nightingale-56 in reply to shaws]

We could even be involved, being Experts by Experience.

[shaws Administrator in reply to nightingale-56]

Of course we certainly could and they'd learn more in a few days than they could learn anywhere else.

We'd have to change quite a few things mind you, especially informing them that there is more to thyroid hormone replacement than levothyroxine. To also reinstate NDT plus T3/T4 and give patients a choice - not to be dictatorial and 'one size doesn't fit all'.

To also rectify the BTA's misinformation about NDTs as many members have done very well on it and they shouldn't have to source it from elsewhere.

[Hidden in reply to shaws]

I would love to do it Shaws but no one wants to help me and it needs more than one retired nurse to get the junior doctors to listen. I dont have the confidence to do it by myself and it needs to come from an organisation or needs an interesting scientist that they will respect. I have an agenda and stuff. I am just going to keep plugging away at it until someone volunteers.

[Kitten1978 in reply to Hidden]

One of the HU members has been providing teaching sessions for medical students. Apparently they found the sessions very useful (I'm bloody sure they did) but their lack of knowledge on thyroid disorders was rather shocking. Annoingly I don't remember the name of this HU member ;( (she is probably one of the people I follow but I follow so many

I know you would like to target junior doctors but maybe it would be easier to get your foot in the door and start with medical students?

[shaws Administrator in reply to Kitten1978]

that's a good idea - before they specialise.

[Kitten1978 in reply to shaws]

To be honest: catching them at any point would be good as the level of knowledge about thyroid disorders is so low among doctors in general. Regardless of their specialty and experience. Students are always more receptive and more empathetic...

[Hidden in reply to Kitten1978]

A good point would be before they have done a stint with a consultant endo so they are not fed all the crap before hand.

[Kitten1978 in reply to Hidden]

Definitely Still: I think a real person talking about their personal experience of thyroid disorder and nhs (mis)treatment would make much bigger impression. I remember people talking about their own experiences much better than any "clever" lecturer who has spent years with their nose stuck in books...

[Hidden in reply to Kitten1978]

yes I think a couple of people talking about their experiance of the illness and treatment and if possible an expert. The expert would be important to get them there as Doctors are a weird cult and only really respect people they see as equals and might need to see a DR before someones name.Maybe someone with any PHD would do and we would not have to tell them it is not a medical doctor. Serve them right.

[Kitten1978 in reply to Hidden]

Hidden I think you and I differ very much in our views on who the "expert" is and what makes an "expert". I think we, thyroid patients, are an experts on thyroid illness. If you think about the most helpful specialists in thyroid disorders such as Dr P, Dr Lowe, or Dr Hertoghe, they also suffer (or suffered) from thyroid problems (I don't think Dr Skinner did but this would be an exception, rather than a rule).

I attended teaching sessions in mental health where former service users talked about their experiences of self harm or psychosis...to an audience, which included psychiatrists and clinical psychologists (= so called "experts by training"). TedTalk by Eleanor Longden on her experience of hearing voices is a great example of people sharing their lived experience: youtube.com/watch?v=syjEN3p...(Not working as expected?)

I guess most people outside of this forum would consider endos an experts. We all know they aren't (this is where our problems are coming from!). Even if there were more competent endos out there who would be willing to help it would be far too expensive for them to run teaching sessions. Specialist doctors are among the highest paid among the NHS staff and their time is precious. Waiting times for endocrinology appointments are long enough and this is where they are needed. I'm afraid an idea of having to have a doctor in there is probably unrealistic.

What I'm reading in between the lines is that you are anxious of doing it on your own and that you would need some support. That's understandable. That's why it would be a good idea to see whether any ITT members who would be interested.

[Hidden in reply to Kitten1978]

I think we very much agree on who the experts are. I have utterlly no time for endos or thier so called expertise and do greatly believe that patients have far more understanding and grasp of the subject than most doctors ever will. I love having control over my own thyroid care and do not beleive there is a doctor in the world that could do better. I also think that I could teach better than a lot of experts on the subject. What I do think is that doctors (and I did work with them for many years often think that they are superior beings and would only come to listen or be taught by someone they consider to be an equal and to them that means a DR) I would like to have the name of a so called expert on the info inviting them to event just to get them to come.

It may work in psychaitric circles a bit better as I said earlier as less arrogance on the whole in the culture. We might be able to get away with not having a Dr on the posters/info in psychaitric setting. But for doctors else where patients led training flys in the face of all they beleive about themselves knowing whats best.

I may be able to overcome this arrogance with really challanging info about the teaching but it is there in a lot of doctors and it would be a much safer bet that they would come if we had a DR on board even if the doctor didnt say anything. I have struggled a bit with ITT as I wanted to do this with them but they had an agenda and I got told off for not following agenda closely enough and everybody was going on about T3 and that horrible Dr Toft and and so I pulled out of involvement. I was kind of involved at the start of it and it was kind of triggered by a post on here I did about political action but I felt that I was clashing with the woman that set it up. I felt she was trying to control me and that I was expected to do as I was told and I just wanted to get on with this idea of teaching junior doctors but wasnt allowed.

I am utterly with you on patients being the experts but I just know that not many doctors are.

[Kitten1978 in reply to Hidden]

Hidden

Please accept my apologies for not replying ealier. I got snowed under Christmas preparations.

I'm really sorry to hear that you didn't find the ITT helpful. I'm very disappointed that your idea wasn't supported ;(( I just wonder whether a part of the problem was the imminent and scary issue of T3 withdrawal. Maybe it just wasn't the best time to think about training sessions for "professionals" when people were so stressed and angry about T3 issue? Many of us literally cannot survive or function withouth T3, so access to medication is a priority ;( I do hope you won't give up on the teaching idea. It's much easier to write a letter but doing things like teaching requires more courage

Merry Christmas and I wish you the best in the New Year 2018 Take care x

[Hidden in reply to Kitten1978]

Thank you Kitten. Yes everybody has been stressed by the T3 issue and it is understandable. I am thinking to try and present it differently than offering teaching ( although I hope it will be educational) I think most doctors do not want to be taught by mere mortals like us. What I am thinking to do is to offer to facilitate a discussion in my own GP surgery on thyroid issues. So to make it a 2 way thing allowing us to have an open safe chat. I will probably try to do it with another local sufferer and we might try her surgery after. I am going to look up how to facilitate peace negotiations. Maybe if we are successful we could take it furthur afeild.

[Kitten1978 in reply to Hidden]

It sounds like a great plan This way it would sound less threatening and therefore easier to sell. I'm glad you haven't given up in spite of the difficulties. I'll keep all my limbs crossed it will work out and give you even more confidence to take it further! Take care and all the very best in the New Year 2018 xxx

[Hidden in reply to Kitten1978]

yes kitten medical students as well. I get confused between the 2 as medical students and junior doctors on wards I think over lap quite a bit. Not sure how many years at uni if any they do before comming onto wards as junior doctors.

I dont think it would be hard to get them to come and listen and I think it would be allowed in hospitals. I also think offering to teach at psychatric hospitals would be a good foot in the door. When I worked as a psychatric nurse a while back in Bristol,patient led stuff and patients being involved in teaching was a big goal of the local provider. We could do a 'hormones and mental health' session. A lot of trainie GPs,training doctors and stuff hang about psychartric hospitalsas well as nurses and the culture in psychaitry has always been less hieracrchyial. The culture has always been more listening to patients and other staff. I would be willing to pay for some catering and do it over a lunch time. If I got permission would anybody help?

[Kitten1978 in reply to Hidden]

...and community mental health teams - I bet there are thousands of patients with thyroid disorders there treated for "treatment resistant depression" etc. ;(

Hidden : don't get intimidated by so called experts e.g. psychiatrists, psychologists and obviously endos. You own your own experience. As for professionals within mh: yes, they are much more open to listen to the patients and to value patients' experience. On the other hand: they know next to nothing about thyroid, which is shocking given how much thyroid problems affect us emotionally and cognitively!

I woud love to give you a hand but I'm still not well enough to make any commitment ;( I've been recently diagnosed with a second autoimmune condition and I'm waiting for investigations on my adrenals ;(

May I suggest two things?:

- are you a member of the Improve Thyroid Treatment (ITT) group? It's not a support group but a group of thyroid patients who want to improve the treatment of thyroid disorders in the UK. We are on FB: facebook.com/groups/ITTCamp... One of the aims is to create local ITT groups like the one in Norfolk:edp24.co.uk/news/health/wom...

Educating NHS staff about thyroid disorders is definitely a great way to increase the chances that people get the right diagnosis and treatment and ITT would be the best place to ask for support of other people.

- MIND could be another place to try. They do a great wesite on the impact of thyroid on mental health: thyromind.info/

I've copied Kitti1 from ITT in this message.

[Kitten1978 in reply to Hidden]

Another thing: you are offering your time, knowledge, and energy to provide free training to NHS staff. THEY SHOULD BE GRATEFUL as you have a lot to offer. If you convince them that it is important and give enough time to prepare they should be able to schedule longer time for your teaching session (unless you prefer a shorter lunch time session to start with). It's a duty of the nhs staff to attend CPD events!

The lady who provides teaching sessions for medical students up North actually gets paid to do this. But she does it for a medical school, not for the poor NHS.

[Kitten1978 in reply to Hidden]

Another HU member, which I mentioned earlier, is called endomad . I asked them whether they would be so kind and share their teaching experiences with you. I copied you in my request in another post: healthunlocked.com/thyroidu...

I would love to do it with you but there is way too much uncertainty about my own health at the moment ;( The only thing I can be 100% sure about are the dates of doctors' appointments and blood tests lol ...Fingers crossed 2018 will be a better year xx

[Hidden in reply to Kitten1978]

Thanks Kitten. I will get in touch with this person. Really interesting talk you posted about voice hearing. The world is changing so fast thanks to internet

[Hidden in reply to nightingale-56]

I had a look at the american thyroid association website a little while ago and the study they cited on the front page was embassessing. It claimed to prove that elderly people needed less thyroid hormone as elderly people on thyroid replacement were more prone to falls. The study had not even asked how much thyroid hormone the people in the study were taking or thier blood levels let alone whether they felt they were on enough replacement. But it was cited as important new study and has I think been widely accepted as fact and yet there are good sceintific studies being ignored. We do need to enlighten young doctors and doctors with less entrenched veiws. It is no good argueing with endos they have too much egg on thier faces and are not able to back down. With all political issues and this is deeply political you need a ground swell.In this case we all ready have massive support from fellow suffers, we now need to work the swell upwards with junior doctors.gps and nurses. If we take it higher at this point we will just be ignored or worse. Once junior doctors start rolling thier eyes at the stupidity of thier seniors like we do or GP stop reffering to endos as they are confident they can do a better job themselves more of the senior doctors will start to break ranks and listen.

[shaws Administrator in reply to Hidden]

The 'elderly' probably didn't have sufficient T3 in their bodies. The following will also aggravate many on this forum. These endocrinologists are hard-hearted in their insistence that levo alone is wonderful and blame us, the patients, for complaining:-

"Meanwhile, Quality and Outcomes Framework thyroid targets in England encourage regular monitoring of patients with hypothyroidism, and Dr Vanderpump suggests this may demonstrate greater fluctuations in thyroid levels than previously realised, accompanied by a tendency for micromanagement of levothyroxine dosing in primary care, whether or not this is indicated by a patient’s presenting symptoms.

As Dr Vanderpump points out, in the modern world, people have high and sometimes unrealistic expectations about how energetic they should feel, but that does not mean that tiredness and depression should be ignored.

“Levothyroxine is the most perfect hormone replacement that has yet been devised for endocrine conditions, but there are undoubtedly people who fall outside the current treatment model. Animal-derived products that contain T4 and T3 are not physiological and are not the answer in the longer term, but we do need to find ways to ensure that all our patients with hypothyroidism feel the full benefits of replacement therapy.”

(they do not appear to have found it yet and don't listen to patients and clearly ignore them. Who is in the best position - someone who is well or someone who remains unwell on what makes them feel much better).

In that case why do they not listen to researchers and cleverer people like diogenes and his team. There have been so many positive outcomes from research which is by-passed and those who are supposed to be learned don't want to recognise that quite a number need another hormone than levothyroxine.

They let suffering continue and are insensitive to individual patients needs.

It is not a case of 'one size fits all'.

pharmaceutical-journal.com/...

Also Dr V has said that we are suffering from a somataform illness if we complain.

[bluebug in reply to shaws]

Most people with thyroid issues and autoimmune diseases are women. Women are known to be hysterical according to such doctors as they don't fit the medical model of disease.

[diogenes Remembering in reply to shaws]

Vanderpump has the temerity to state on the one hand that animal-derived products do not have physiological (proportions) levels of thyroid hormones and yet promotes a product T4 that is in its administered form as nonphysiological as you can get. Talk about doublethink - Orwell would have loved it.

[shaws Administrator in reply to diogenes]

I must admit that this 'expert' has raised the hackles of many of us on this forum. I think conceit leads these types of 'specialists' to damn the patient and not the product.

In fact I assume that none read or acknowledge Research nor attempt to relieve the poor, unwell patient but sends them off with a flea in their ear.

I would really love to know the total of 'in kind' rewards were given.

[amala57]

I think I said this before, it takes on average 17 years for new research to get to the front line. Shameful.

[Katepots]

We have a lot of work ho do!!

[helvella Administrator]

Perhaps the existing science/medical journal hegemony is at least a part of the problem?

The UptoDate site is operated by a journal publisher. What are their interests? Pretty obviously, to make people pay a fortune for access to the papers they publish. Anything other than collecting money is used to funnel people (and organisations) into the parts that collect money.

The more papers that they publish, especially those which ultimately are repetitive, go barking up blind alleys (to mix metaphors), the better.