Medical negligence ?

[Millie103538]

Hi just wondered if anyone has, or thought of going down the medical negligence route regarding poor Thyroid treatment? Levothyroxine works well for many but not everyone. What if you cannot take Levothyroxine and alternatives are available but your GP cant/wont prescribe them and you are still poorly? I am seeing so many posts where people are still suffering and have poor quality of life. I am going to start looking into this, but wanted to hear other peoples views.

[tattybogle]

i agree with the point that in effect it's negligent... but don't think it could get anywhere legally due to the fact that they are following 'evidence based guidelines'. So it's the ones who chose which evidence to include who are negligent , rather than those who follow them... and they would just say . "well the other evidence was not good quality enough for us to include in NICE guidelines"

Also the vary varying symptoms of hypothyroidism make it virtually impossible to prove that somebody 'couldn't take Levothyroxine' ... there are too many other factors that they can blame symptoms/reactions on.

You would need measurable factors, like TSH/fT4/3 results,, ie 'took large enough dose of Levo but TSH didn't reduce'... and even it they see that, they can always blame 'patient compliance' ie. not taking it regularly. They would only accept that if they observed someone taking the tablet under controlled circumstances ie. full weeks dose all at once ,then see if TSH falls.

While the mainstay of thyroid treatment remains TSH measurement and doesn't consider symptoms /fT3 results as equally important , they have the best defence possible .. "your in-range TSH say's your thyroid condition is now Euthyroid , so you're better . . . therefore anything else is . . . something else." Case Dismissed.

[Millie103538 in reply to tattybogle]

My daughter did a trial with an endocrinologist, she went back on Levothyroxine which made her ill, she was told she needed a higher dose, which made her worse. Eventually they added T3 which helped and some symptoms disappeared. She now takes Armour thyroid and ALL of her symptoms have disappeared. She has to pay for private prescriptions via a private doctor.

[Lalatoot]

NDT is not licensed for use in the UK so a Dr would say it is negligent to prescribe it There is a lack of scientific evidence based on trials to support the need for combo dosing. Indeed at least 1 study says it is of no benefit. So until it can be scientifically proven rather than based on patient experience you would be on a hiding to nothing.

As long as your blood results are in range the endocrinologist can point to them and say that these are normal results and that any symptoms are due to non thyroid illnesses .

[tattybogle in reply to Lalatoot]

from (vague) memory .. i think they managed to find about 13 studies saying "they found no benefit from T3/Levo combination therapy, over Levo alone". even though several of these reported that the patients preferred it.. but (conveniently) 'patient preference' wasn't one of the results they were officially measuring in the outcomes. Also if you look at how they conducted these trials of combination therapy, it is usually blindingly obvious as to why they don't get better results than Levo alone (they reduce levo too much, they use inadequate doses of T3 , they don't allow long enough time to find that patients optimum dose , they don't test the people most likely to benefit , some of them don't even bother measuring fT3 etc etc.

[Millie103538 in reply to Lalatoot]

Many drugs are unlicenced but are still prescribed in the UK a doctor is able to prescribe on a "named patient" basis. I personally know of 4 people that are prescribed NDT this way on the NHS it's rare but it happens. An endocrinologist can say what they want but for some people NDT works very well, they can say that blood results are "normal" but the patient may still have symptoms, that are NOT due to other illness.

[bantam12]

Who are you going to claim against ? If it's the NHS it will likely go nowhere.

I have considered a claim after my husbands death, bizarrely it's because he was taking prescribed T3 not because he was denied it, ultimately it contributed to his death but that's all I can say about that.

You need nerves of steel and deep pockets ( yes no win no fee can cost £££s) if you do attempt it !

[Millie103538 in reply to bantam12]

bantam12 I'm very sorry to hear about your husband.I don't really know who I am going to claim against, I am just thinking about it at the moment, it just seems so unfair the way people are treated, when there are alternatives that might help some.

[Josephineinamachine]

What we need is to instigate another study - on our terms. Anyone know a medical researcher with shed loads of money and an interest in thyroid…??

[Hidden]

I have discovered a way of showing that every doctor who believes that NDT can be helpful to patients who fail to get well on levo alone, yet fails to inform their patients of his belief, is guilty of failure to obey the instructions of the GMC and can therefore, theoretically at least, have their licence to practice medicine revoked.See the following from the GMC:

"Consent - patients and doctors making decisions together";

part 2 "making decisions about investigations and treatment, Sharing information and discussing treatment options" states:

"(9) You MUST give patients the information they want or need about:

(l) any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer."

Every other attempt by me to get NHS NDT having failed, this is what I am now pursuing. Goodness only knows what will happen. In effect this goes further than mere GP's alone and offers some degree of proof that EVERY doctor who has any sort of responsibility for producing ludicrous "recommendations" for NDT (eg BTA, NICE, Endocrinology Society, CCG's and APC's) but who is aware of patients that have benefitted from NDT is guilty as zero details of anything positive about NDT is offered anywhere.

This may possibly be construed as negligence rather than simple forgetfulness or hypocrisy, but would need to be tested in a court of law. I have no desire to put all my savings, investments and house into doing this myself as the NHS has unlimited funds to defend their actions and my funds cannot match theirs. I am NOT a lawyer and have no experience of anything legal.

[tattybogle in reply to Hidden]

unfortunately .. i don't think you cant apply 'that' bit to the people involved in making NICE (or any other) guidelines. The making of guidelines have their own rules /standards that are mainly to to with the 'quality' of evidence, and it being good/strong enough quality to make a recommendation in the guidelines.

Their personal belief doesn't come into it.

At least that is my understanding of how they make guidelines.

It DOES apply to doctors in their practice , true.. but it is very easy for them to get out of it , if they wanted to ,cos they say "well, i was aware of NDT, but based on the evidence i found, and based on the recommendations in 'x' guidelines... I don't believe it would have any greater benefit to the patient.. hence why i didn't advise them about it , even if my organisation could not prescribe it"

So, sadly a GP/Endo who chooses not to mention it , has a good defence as long as they don't believe it will help .. And until there is evidence (of a quality that guidelines will include) to prove otherwise , it's still just a matter of opinion/belief.

[userotc]

We tried that vs a GP (not specifically thyroid but a syndrome). Bottom line is its a waste of time mainly if the treatment given by one GP is likely to be what others would give. It's not whether it's the right treatment! Crazy but they're effectively bullet proof.

[Millie103538]

Re my Medical negligence? Post, thank you so much for all your replies.I really do understand the process of trying to claim medical negligence is not going to be easy.

I do think treatment for hypothyroid problems will have to change in the future, too many people are still suffering. I can't think of any other medical condition where no other drug is available if initial treatment does not work.

I also understand Levothyroxine works well for many people including 3 out of 5 of my family members diagnosed with Hashimotos.

The only treatment NHS offers is Levothyroxine. If you are "lucky" they may add some Liothyronine. I also know that this is all about money, NDT is expensive. It was good to hear drug companie is being fined by the government for hiking the prices of T3 recently.

So where does this leave the 8% (according to our local endocrinologist) that Levothyroxine does not work for? I have signed petitions, wrote to my MP.

Myself and my daughter now pay for NDT via a private doctor, we have to do this to feel well, we can't really afford it but we have to make sacrifices. What about the people that cannot afford to pay?

Perhaps a law company may act and take on a case if enough people came forward ?

[Babette]

Personally, medical negligence claims don't sit well with me unless the claimant needs ongoing care and the compensation is to cover the additional cost of that. It takes money out of the health system and other patients may suffer as a result. A continued campaign for better diagnosis and treatment is a more positive approach that benefits others. Just my view.

[Millie103538 in reply to Babette]

Hi Babette I'm not sure if I am explaining my thoughts well, I am not seeking any financial compensation. I just want the correct/effective treatment. I don't believe I or others should have to pay for this. Many Hashimoto patients are suffering, and costing the NHS money, due to extra tests, medication etc and workplaces due to sickness.

Like I said despite many petitions, writing to MPs etc over the years,we don't seem to be getting anywhere. A legal case may improve our chances of getting the correct treatment.

[Babette in reply to Millie103538]

I completely agree that patients should get the diagnosis and treatment they need, not have to source their own medication, and that not getting this is costing the NHS more. I also share your frustrations about the lack of progress.

Is a medical negligence claim the correct route to change guidelines?

[tattybogle in reply to Millie103538]

i understand where you are coming from.. re "what about the other 8-15% ? "But i suppose it still comes down to NHS officially accepting that some need added T3/NDT to get well from symptoms of hypothyroidism.

and despite the fact that they do prescribe T3 under some (undefined ) circumstances, they still don't officially accept it's needed. There are just a few Endo's who are out on a limb, prescribing it, against a lot of pressure not to... but this is not the same as an official acceptance in writing that it's needed/beneficial.

To me it all come down to evidence. the NICE thyroid guidelines are relatively recent , and presumably won't change until there is new evidence to consider that wasn't there in 2017-2019. And they only accept stuff like double blind placebo trials as good quality evidence .. so to me the push needs to be for well designed trials focussing on the right patient groups , and testing the right outcomes , to provide evidence that NDT/T3 does help some of those people...... until thus happens the guidelines can't change. and until the guidelines change GP's and Endo's are immune from any official action against them.

Even when evidence of this nature exists (and i think ? there is a new trial underway which may be of some use) .. there will still be a lot of reluctance to actually get on with changing guidelines .... due to so many ego's in the room based on TSH/levo theory .

[serenfach]

Unfortunately you wont get anywhere. They are untouchable. I had an operation to remove a kidney and the surgeon forgot to tie the main artery. I bled out and crashed, and had 5 rounds of cardiac zapping and 20 pints of blood, and another operation all while I was still in recovery. They also took the adrenal gland without permission. I was on life support for a while.

Turned out it was my fault as I had "made my artery go into spasm" while unconscious. They also left a swab or something in there as it can be seen on the scans.

I did not even get an apology.

[Millie103538 in reply to serenfach]

So sorry you had to go through all this serenfach A close relative of mine suffered negligence when a hospital sent him home with very bad burns, eventually he needed skin grafts which may not have been the case if he had received the correct treatment in the first place. We didn't get anywhere with medical negligence case, but did get an apology.

[Lesleynotts]

I agree for the most part with tattybogle's last reply, however there has been a little opening up of prescribing for T3 in that it is allowed in [as the Endos etc. describe it] 'exceptional' cases and so by follow on they are accepting that it is needed for those patients.I was pleased that the CMA said that 'many patients do not respond adequately to the main treatment for hypothyroidism, levothyroxine tablets - and instead rely on liothyronine tablets to alleviate symptoms such as extreme fatigue and depression.'

This ought to be repeated to Endos and GPs again and again and as well as double blind placebo trials we ought to collect data about how many patients find liothyronine [T3] is helping them too.

The practice of suddenly taking patients off T3 who were well stabilised on it is very bad ?negligent and I wonder if those affected can get together to take some action somehow against the NHS/drug company following the CMA ruling. Of course that would be difficult and it is even more difficult for those who have been denied liothyronine in the first place.

In summary I think that we have to keep plugging away on several fronts for better hypo care.