Our several papers in Frontiers in Thyroid Endocrinology are being combined together in an eBook, whereby all of them will be available under one cover together with a foreword.. This should help any TUK posters/members in gathering data for showing to GPs/endos etc. Production is now under way and the book will soon be available by download.
ebook in Frontiers in Thyroid Endocrinology acc... - Thyroid UK
I think that when the ebook is published, I'll produce a simple precis of the findings and their implications for diagnosis and treatment that can accompany it. This is so that the detailed and often difficult arguments are crystallised into straightforward statements a patient can give based on the findings, that can be told face-to-face to the consulting GP or endocrinologist. For example, that the TSH range for healthy people does not apply to those on therapy especially those with no working thyroid. And that undetectable TSH is not necessarily a sign of over treatment if the FT4/3 remains in range. And of course that in this case, symptom presentation overrides simple biochemistry and individuality must prevail over decisions based on biochemical ranges.
Diogenes that sounds perfect as the doctors/endos assume they know better than those who suffer through insufficient knowledge by the professionals.
I think the first to receive copies is the Associations - BTA, BTF, RCoP, Society of Endocrinology, Royal Society of Medicine and others of whom I am unaware. No. 1 of course (as you more or less state) acknowledgment of symptoms, symptoms, symptoms.
Will they listen? I hope so as it seems some humanity is badly needed in these professions
I'll be happy to have more info for my docs.
True. One of the problems in the US I've found is when we are hospitalized our regular doctors usually don't see us til we go for follow up appts after discharge. We are seen by new specialists for a consult if
necessary. For our general overall care we are seen by doctors called "Hospitalists" who are responsible for following inpatients. And it's usual to see a different one depending on who's working that day. I know I have to gear up for battle because we are unknown quantities to them and often they make their visits, write and change orders after spending a few minutes in our room-usually standing on the doorway with one foot still in the hall. This exchange often takes place before they have bothered to check our charts. This is evident because they often ask questions which shout I don't know anything about you.The first we realize meds and tests have been added, deleted, or changed is when the nurse comes in with a strange pill or doesn't bring in something we have taken long term. When asked about it the answer is"Oh, Dr@@@@ ordered this or cancelled that. Very often they don't know why. I think this is a terrible way to manage inpatients. One of my skirmishes was when my day nurse brought in my thyroid meds at 7:30am after morning rounds. Breakfast was at 8am. Fortunately I am usually a few chess moves ahead of the system. I always bring my own meds to the hospital and take them when I'm used to taking them at home. Had already taken my thyroid meds at 5am. Patients are told they can't do this but we can. I've had them send a doctor in, explained that I will not change my med schedule that works well for me at home for a 2-3 day stay because the nurse can't get her meds passed out on time. I guess this makes me the patient from hell. But I am the customer, was a nurse myself, and have the right to do what's best for me not what is for staff convenience. There's a saying around hospitals" "If it weren't for the patients we could get our work done." Thanks for listening to my rant. irina
We have to stand our ground. How many poor patients are brow-beaten into accepting the routine of the hospital and it seems there's no 'client/doctor' interaction and so the patient doesn't feel he/she is getting the best from the 'expert' the doctor who we are expecting to know the anwers and to make us well again.
If it weren't for the patients, they'd have no work at all to do and therefore no wages to run their lifestyle.
If any doctor who brings a hypo patient to symptom-free health, there will be queues a mile long for a consultation.
T'll be in that queue! One thing I do is have a folder with abbreviated necessary info with me to bring to the hospital. I keep it in my C-Pap case so I don't forget it. Even if I'm getting good care from my regular doctors, it's these hospitalists who seem to have no clue about so many medical problems. They know standards of care but often won't change their treatment plans for those of us who live outside the box. More and more we must be responsible for knowing how to drive our care.
Thanks, SA. Sometimes its fun and almost like a game to see how I'm going to buck the system while hospitalized. Makes the time go faster.
I believe the root cause is that because these 'hospitalists' are only managing us til discharge and we go back to own docs they don't consider good communication essential. Too time consuming for a short-lived doctor-patient relationship.
Actually the way to lessen my stress is to let them make the changes they want , do my own thing anyway, then send my reg doc an email after I'm home and get everything re-computerized the way it should be.
Keeps my pacemaker rate in the 70's. Tee Hee. More than one way to get to Checkmate! 😊
This is going to be an amazing resource for thyroid patients diogenes Thank you for all of the work that you do to research and support thyroid patients. It is very much appreciated!
Thank you from the bottom of my heart.
I have my first Endo appointment in 2 months and was wondering/worrying how to be prepared / how soon to try to collate stuff / would my brain cooperate and would I be able to tell the wood from the trees. I now wait the download with hope and excitement for my appointment. <3