I remember a junior doctor talking to me years ago when I was a student nurse, saying that the doctors all knew about the poor treatment thyroid patients had and hated having to work under the restrictions imposed on them but felt powerless, that everyone who tried to rebel against the status quo ended up in trouble. That he had considered resigning over the issue but came to the conclusion there were lots of other people he could help. He said they all hated it but had to keep stum.I wonder if a lot of our grumpy doctors hate having to offer us such poor treatment and have just buried their heads in the sand over the years and have got a bit short and grumpy when we walk in and remind them of what a crap job they have been made to do. I wonder if we could try and bridge the gap a little. May be suggest to people who are not being given good treatment that they ask GP to support them treating themselves as a compromise. Maybe we should be acknowledging a bit more that the doctors dont like the situation either. I think they may be caught between a rock and a hard place. I think we might need to try to make friends with them.
remembering a conversation with a doctor I had ... - Thyroid UK
remembering a conversation with a doctor I had years ago and wondering if a change in perspective might help
You're right and I think many GPs do know the problems and gradually things will change - my GP has told me how wrong it is that he has to test TSH instead of FT3 and FT4 (he knew that the local lab always tested all my levels because of having low TSH to start with but also lowish FT3 and FT4) and that he can only treat with T4. He asked me if I knew how many people in the country weren't being treated properly and was surprised that I actually did have a good idea! He's never offered to treat me, but knew I used to self-treat and now knows I have a good endo, but has asked how much NDT costs me and has always arranged 6 monthly tests for me. I had seen him a few times years ago when I was first ill, but it was a different GP who'd sent me to Dr Skinner and then refused point blank to treat me for "medico-legal" reasons as my blood tests didn't show a problem. I later learned that I was the third patient at the practice to be diagnosed and treated by Dr Skinner and so the GPs must all have seen us getting better!
About 4 years ago at the local A&E for a different problem, I'd had a thyroid test and was told it was fine, which surprised me because I knew my TSH would be non-existent. So I queried it and was told, by a really lovely very young doctor, that as long as FT3 and FT4 were in range the TSH didn't matter. He saw my surprise and said things were changing and that they had a very forward thinking endo there - he's the one I now see 
Edited to say that, although I used to get very frustrated and angry with my GPs, I never lost patience with them, gently let them know that I was as educated as them in a different discipline and did have a brain somewhere (although that shouldn't be necessary, they should treat all patients as equals!), and kept asking their advice and what they would do in my situation. It's definitely worth being friends with them.
Doctors should not be restricted if they think that a patient needs a certain prescription.
I think what he means is that they can no longer prescribe NDT (due to BTA's untruthful published Statement about a product in use in varius forms since 1892 and successful - no such things as blood tests then) and despite Dr Lowe requesting every year for 3 years for a response, they never did but withdrew all NDT's from being prescribed. Leaving patients in a lurch just as they did with the instant withdrawal of T3.
T3 can be provided from other countries much cheaper but they didn't want that. So instead of options of NDT's or T3 added to T4 or T3 only patients are restricted to levothyroxine alone and many on this forum are more unwell on it and are looking for other options.
Doctors have lost their licences in the past because they didn't toe the line of regulations re dysfunctions of the thyroid gland.
It's time we had a Meeting with all of the Senior Endocrinologists as it is the 'patients' who know best what suits and should have options. Options are available and why should we search the world for options instead of getting it from UK chemists.
Those happy on levo will not be affected and can stay on it.
I think the meetings with senior endos happened when the new nice guidelines were being drawn up and they are worse than ever. I think we need to be working a lot more with GPs, encouraging people to self treat with GP support, to get them onboard a bit and improve relations. I have no time for most endos. The problem is in our society is that the decision makers at the top have got there because they are puppets and controlled and fighting them gets us nowhere.
the guidelines are only draft so far and Thyroid UK TPA and BTF are on the consultees list. However the committee has some BTA members on it, the chair is BTA member and the BTF is on the committee. The BTA write most of the BTF's consultation responses so the BTA have a few bites of the cherry.
BUT
TUK and TPA are consultees, the recent co-operation with the BTA over liothyronine and the recent research papers by the "BTA" show that the BTA is mellowing and coming up to speed (albeit slowly) with "our" way of thinking.
but so far the TSH has been raised to 10 and we were hoping to get it reduced. I am glad they are only draft but the draft looks awful and why is it published if it is not finished?
The first draft goes out for consultation and the consultees have a chance to amend the first draft. What usually happens is that the consultees comments are tabulated and the committee put their response to the consultees response. That is then published. Hopefully that is the chance to correct the reference range, not rely on TSH, monitor T4 and T3 as well, include signs and symptoms, take note of diogenes et al.'s work regarding different standards when on therapy as opposed to healthy people plus their other work and prescribing T3 to those who need it. the comments were in the original comments when the scope of the draft was first put out for consultation.
This is my summary of the process but NICE have the full process for writing guidance on their website nice.org.uk/process/pmg20/c...
nice.org.uk/process/pmg20/c...
An upper value of 10 for TSH is contrary to nearly every reference range I have seen which varies from ~3.5 to ~5.5. I have signs and symptoms with a TSH below 3.5 but mostly resolve when I take levothyroxine. I wonder if my GP will refer to the NICE guidance if it comes out as a TSH upper limit of 10 when he wants to stop my medicine?
I am not sure what has been published as nice guidelines recently but I was so upset when I read them, very little guidance re good practice and the TSH of 10. I hope it gets changed.
Me too!!
I agree. As long as a doctor is willing to have an open mind and work with me we are fine. Here in the US Big Pharma has, for years, led the T4 only parade that advocates levo as the be-all and end-all of thyroid care. Levothyroxine has been and continues to be a big money maker here.
Many doctors don't mind being educated by patients and I look for them.
I try to be positive and not a know-it-all. Approach is everything. More often than not we can effect a win-win situation for ourselves.
But if they dig their heels in I part ways. At 75 (next month) I just don't have the energy or time left to waste on anyone who won't meet me half way.
Doctors, at least here (US), have a lot of autonomy about the care they provide. Sometimes they are in the pockets of Big Pharma, sad to say. Over here BP is king.
After spending 40 years in the healthcare system here I find myself moving further away from mainstream care and meds when possible.
Some illnesses and meds are huge money-makers here and insurance companies will pay for many things if the doctor words his documentation correctly. I always try to ask a doctor to start with the least invasive treatment before going onto more dangerous procedures and expensive drugs,
Not always possible but worth asking about. At the very least maybe they will see me as an educated consumer and not a cash cow.
Sorry to be so cynical but 40 years in the system has shown what our medical infrastructure is like. irina
I agree went through LYME in the United States, this is some our government “standard of care”. The panel that decided what happened with Lyme also had a vaccination with large money involved and they fought to keep us sick. The IDSA sets the controversy. Who allows this we need this part of expensive talk stopped and patients and docs choose. Not someone with a money crutch that’s hurting all of us by denying treatment. Now hypothyroid. We all need to petition first to get rid of insurance companies. Then let’s see how the medicine drops in price
You are correct mandyjane . Always best make friends and sympathise. With their problem and see their side...and that gives you a way in!
GRC T3 Removal Proposal
A national scandal ?
GP appt - only partial success!
NDT - Anyone take with their Levo?. I had 7/8ths thyroid removed 30+ years ago.
