I've been a member on this forum since the end of January this year, and have been appalled by the consistent reports of GPs with so little knowledge of our problems. Would TUK be able to put together a Doctors pack that we could present to our GPs? Particularly as we are endorsed by the NHS they may take some notice. What do folks think? XXX
Doctors Pack: I've been a member on this forum... - Thyroid UK
Doctors Pack
Written by
sheenah
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76 Replies
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great idea.
Brill idea
This would be such a good idea. Wish I'd had one a week ago to show the ignorant Endo. Janet.
Great idea. Can we please give some input? For instance, having no thyroid (me) is very different from having Hashis with auto immune problems or simple hypothyroidism without auto immune. All are horrible but have different problems and cannot be lumped under the same hypo heading, with the same treatment. I feel TT patients definitely need T3/4 combo but better still would be NDT. This should be clearly stated, so that GPs start to realize there is life beyond Levo when one has no thyroid. What do other TT members think?
Absolutely right - I had years of being treated as if 'underactive' rather than thyroidless.
Excellent thought! I love "Life beyond Levo" - that could be our slogan!! Come on folks - tell us what you think! XX
What a great idea
It's a great idea but "you can lead a horse to water, but you can't make it drink".
Excellent idea!
What a fantastic idea.
Great idea Sheenah x
Great idea x
Like everyone else I think it's an excellent idea and hopefully help patients that much more.
Brilliant when can i have mine
If you're a doctor, I sincerely hope you will take it on board. Most of us have really suffered at the hands of doctors. In the meantime there is lots of usseful information on the main Thyroid UK website. 
Brilliant idea x
Ab Fab idea.............10/10
Maybe add a plug with the pack; so that the arrogant, miss-informed Gp's can plug us in , just like a diagnostic check for your car!!
shawsAdministrator
The guidelines laid down by the British Thyroid Association are what the doctors have to follow. After all BTA are 'experts' in the Endocrine system. Also many patients do feel well on levothyroxine only.
It is unfortunate that all student doctors nowadays are not trained in the clinical symptoms of thyroid gland problems so that they are very knowledgeable in all aspects of the gland. Now, it is the TSH which is king and diagnosis by clinical symptoms are laid by the wayside.
How many on this forum are told initially they don't have a problem and year(s) later they do - according to the TSH - despite suffering ill-health for a long time. Dr Skinner and Dr Peatfield were trained around the same time and could diagnose just by looking at the patient. Both would have given a trial of thyroid gland hormones to see if patient responded.
Dr Skinner was a lone figure trying to change things by the World Thyroid Register as he was so concerned about the "Parlous" state of most of the world's patients. Thankfully, it is still going to continue without him.
Hi Shaws, If you can find me a TT patient who is absolutely and perfectly well on Levo only, I will promise to eat my words. That is exactly the point. I am making. We are not just hypo; we are thyroidless. They are nearly but not quite the same and should not be treated as such.
Start chomping Hennerton as my sister had a TT over 40 years ago and has been very well on Levo ever since. I have no thyroid and am also very well on Levo.
I will start chomping when you tell me you have never had illnesses that you had not suffered before TT. Many people have frequent illnesses that they regard as just bad luck and normal for their age, or the amount of work they do or the life they lead. They never think to attribute them to a lack of T1, T2, T3 and calcitonin. I should love to meet you for a really good talk about it. If you and your sister are glowing with good health, slim, energetic and firing on all cylinders, I will start preparing my chomp.
Hennerton i don't have to prove anything to you but i can assure you my sister is never ill, apart from appendicitis last year she does not suffer with anything. She works full time and has 3 very busy kids. I also work full time and keep very busy with over 20 animals to care for and exercise. I do currently have parathyroid disease BUT that is nothing to do with thyroid. We are both slim and have always been so.
Why do people on the forum find it so hard to believe that anyone can be well on Levo and by the way i have another hypo sister and a cousin who are also slim, energectic and well on Levo.
Enjoy those words !
I think that you should prepare your chomp now.
I confirm that hypohen and her younger sister who have had TTs, plus their elder sister and cousin who are also hypo and on T4, are healthy, active and slim.
I think that it is quite offensive to suggest that someone is not being honest.
Who mentioned dishonesty?
You asked for proof, which implied that you did not believe what Hypohen had written..
This is getting very silly. If you check my posts, you will see I did not ask for proof. That was your suggestion. May we end this now and move on please? (I am still pea green with envy)
Hi Hennerton, just to say that I was well on just Eltroxin after a sub-total, but definitely not now on the rubbish Levo that is around. Janet.
I don't think I was ever given Eltroxin. I had no idea differences existed until I found this site. Am now on armour thyroid and doing well.
Actually I am TT and feel extremly well on just levo and long may it last
That is good news. How long since you had your op?
errrrrrrrr thinking I was 27 at the time so 32 years now
originally I was 23 when diagnosed over active and after TT am now underactive
You are so lucky! Do you think they did a different op all those years ago? Why are so many of us suffering nowadays? Maybe they left some behind then and now they make a scrupulously clean job of it?
dunnno they treated me with RDI first an overdose
and I have a fantastic GP who keeps an eye on me and has bloods done every six months evan if I say I feel ok
Even luckier. Haven't heard of many GPs like that.
shawsAdministrator
A quote from Dr Skinner (RIP)
A World Thyroid Register has been formed to address the parlous situation of patients who are hypothyroid and have yet not been diagnosed and indeed patients who are being managed with an unacceptably low level of thyroid replacement. The situation has significantly worsened in the last one year pursuant to pronouncements in the United Kingdom from the Royal College of Physicians and the Royal College of General Practitioners who inter alia have suggested that patients should not be diagnosed with hypothyroidism if the TSH is <10.0 and moreover that Armour Thyroid is a 'bad' preparation because the proportions of T4/T3 may not reflect the human proportions while contemporaneously suggesting prescription of T4 alone; this makes no sense at all.
I agree with Ansteynomad about the 'leading to water' bit, but I'm sure that for every one of those within a practice, there will probably be a couple more (especially the young registrars doing their GP placements) who will pick it up and read it, if only for curiosity's sake. It's all about potential education and in that context I think it's a brilliant idea! You never know, it might even become recommended reading for those wishing to become the next generation of endocrinologists. Now there's as good a reason as any to put it together!
I have copywriting and communications expertise. I would be happy to assist in compiling these packs to ensure they are digestible by the recipient.
Hi Trudes - we may want to take you up on your offer of help... please can you drop an email to the office.. enquiries@thyroiduk.org
L
x
Hi Sheenah
Thanks for the suggestion...
Unfortunately, our endorsement by the NHS only stretches as far as this community being deemed 'worthy' for inclusion on NHS Choices.
With regards to our general information being taken seriously, GPs will always choose the BTF and/or the RCP Guidelines over anything that Thyroid UK could produce at present.
There is an accreditation in place that may change this, but application for this accreditation is incredibly time consuming and although is it one of our future plans, lack of staff numbers makes it simply impossible, at least at the moment, as it involves a complete overhaul of all of our information, including the website and our magazine.
We would also need to raise funds to do this and we have other projects that are taking priority at the moment.
People do already - and are quite welcome to - print information from our website to take with them to show their GPs. There are also a number of documents that we hold only in office that can be presented to doctors too.
I will draw Lyn's attention to this thread as it seems that this would be something that everyone would like us to do... We still feel, however, that there would be little point until we have gained accreditation of the Information Standard.. theinformationstandard.org/
Sorry that this is not what you want to hear. 
It is something that Thyroid UK would love to do.
Louise
xx
Thanks for explaining the situation Louise. It is a pity it is not possible right now. One day I hope we will superceed the BTF.
Great idea!
Sounds great - does TUK have the resources to get this off the ground? It would make my membership fee even better value
Brilliant idea but I wonder how the doctors would take it but them who cares they certainly don't
I think we know the answer to that, unfortunately. I suggested to my GP that my practice of several GPs should have a thyroid clinic, just as they do for diabetes. Her answer: "But we don't need a thyroid clinic, because looking after thyroid patients is so easy" I should love her to be given the pack.
AAAAARRG
Good idea about a clinic. Maybe the clinic should be called an endocrine clinic as there are many endo diseases that can mimic thyroid disease.
A good response might have been, "did you know thyroid disease can cause diabetes and if the thyroid disease had been discovered and treated in time there might not be any need for diabetes clinics
Hi Hennerton, Unfortunately, there are some thyroid clinics and in our experience, the patients fare no better. In fact, sometimes I think they fare worse because the doctors all have the same views and nothing is done for those patients who don't do well on levothyroxine.
Yes, I am sure you are right. I have noticed members saying that they have been seen only by a nurse, when it seems plain that something more needs to be done for them, although seeing a doctor is unlikely to change anything. I dream of a Thyroid UK clinic, one in every major city. How about it Lyn??
Nhs gps are not interested, does not matter how much info you give them.
I agree with Bluedaffodil ,I have tried several times to show my Gp print outs from reputable sources .He didn't even glance at them .When I asked if I should leave them so he could read them he said no .I don't know if it's fear or arrogance !
Or simply time?
If one of the GPs' accepted sources (e.g.GP Notebook, or maybe BTF) produced an extremely short guide, that might be readable within the appointment, and without them feeling they have to verify the contents, they might be more responsive. I don't think many would relish reading for half an hour or more on top of their ordinary working day.
Once the patient is out of the room they have to go on to the next patient.
Not meant as any sort of excuse, simply the reality of a GP's day as I see it.
Rod
I tried to give my GP a list of my symptoms and he wouldn't even take it out of my hand! 
I have given a typed list of symptoms and questions to both my endo and GP and requested that they are added to my notes - my GP has had them scanned and added. I also included a sentence along the lines of "please take note of how I feel and not what my blood test results show" in very large, red letters. My endo sort of agreed with it, but I still have to get assertive to get anywhere!
I think that may be the answer - short and to the point with references if they chose - or had time - to verify them. I did not mean to stir up such a can of worms. We are all intelligent people trying to help ourselves and each other. If this is not the time to produce this then it is not. We may do better if the Saachi Bill goes through Parliament which appears to encourage innovation within medical practice - even though the use of NDT is referred to in the States as a "grandfather" regime - to so many young (or not so young) GPs it is unheard of - i.e. not "proper drugs". We all know what this is about - but we CAN change it, and eventually we will. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
Sheenah it is good that you opened up this debate ! Nothing but good has come out of it . Listening to each others point of view is a good way of learning . I didn't consider the time element before helvella pointed it out > I suppose if every patient brought in sheets for the Gp to read the poor man wouldn't have a life lol . I was just thinking of my problems ,not being realistic .
I would love to be able to give my GP (and endo) something more professional than me wittering on, and trying hard not to say "I read this on the internet". I am not convinced that they would actually know what guidelines they are supposed to be adhering to are at the best of times as the "advice" I get can be so random.
I don't really understand why my GP, given that she has me as a patient with Hashimoto's, doesn't read up more about it so that she understands this condition better. She is lovely, but I feel she is out of her depth with some of it.
Great Idea the trouble I can see is that the pack will be bigger than the entire encyclopedia Britannica as it is so complex and overlaps/mimics so many other endocrine diseases.
Every little helps.
I sometimes show my GP articles I've come across,sometimes he even coments. Who knows how much is going into his little head coment or not.
Brilliant idea!!! Some essential tests are just not being done, is it cost or what? It must be costing the NHS billions as people are not being diagnosed properly.
I think it's a great idea
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