Thyroid UK
90,514 members104,886 posts

Appalling results and no (or inadequate) action

In the past few months we have seen so many posts regarding people with dreadful test results that are being ignored:

● B12 well below bottom of range.

● Folate less than half bottom of range.

● Ferritin that is approaching zero.

● Vitamin D that is well below the severe deficiency level.

Along with FT4 near or below range, FT3 (if by some miracle it has been done) near or below bottom of range, TSH near or above top of range. And who knows what other out of range results would be identified if further testing were done?

Despite this list of very obvious reasons for someone feeling awful, they are not getting taken seriously. The context has often included reduction of thyroid hormone dose (or refusal to increase). And something like “too thin to be hypo” has often been thrown into the report.

Obviously, as a forum, we cannot take up individual cases with the involved doctors (whether GPs or endocrinologists).

Obviously, many of the individuals would find following formal complaint procedures overwhelming. (I certainly wouldn’t like to have to go down that route.)

What can we do to grab the attention of the medical system? What can we do to ensure doctors involved have their shortcomings addressed? (Yes – I realise that might sound like a weak demand. Demanding their scalps is unlikely to be successful. Demanding retraining seems more realistic.) What can we do to encourage other doctors who are aware, or become aware, to report their colleagues?

Strikes me that an anonymous reporting system might have some mileage. Perhaps doctors who aren’t too sure, but think there might be malpractice, should be able to put in their suspicions? Any doctor who receives more than a certain number of criticisms could then be investigated.

As I see it, the anonymity might make it much easier for doctors to shop their colleagues. If their suspicions are not backed up by other reports, they have not created an impossible situation for themselves such as even a quiet discussion with other colleagues could create. At the same time, the need for multiple reports would help prevent malicious reporting under cover of anonymity.

Not for us to design and implement these ideas, just a thought.

If you have any practical suggestions for action, please respond.

92 Replies
oldestnewest

Local Healthwatch's are there to monitor health and social care. They don't take on individual cases, but will act on trends. If Thyroid UK was to run a survey of patient's experiences at their surgeries, this could highlight inconsistencies.

12 likes
Reply

That’s a great post helvella and appallingly sad but true.

I would be happy to send it on to two female GP friends, a male consultant radiologist friend and Dr Harry Sprot, a seemingly sympathetic GP I came across recently if you think it would help to get opinions from ‘the other side’ or do you think I’d just be hitting my head against a brick wall? I honestly don’t hold out a huge amount of hope but a different perspective might give us some sort of a lead?

I’m sure more experienced forum members will have much better ideas but it’s the best I can come up with.

8 likes
Reply

Kipsy,

You would be most welcome to do anything with it that is intended to help. :-)

Sometimes it feels like a war between thyroid patients and all doctors. The reality is rather more nuanced with many doctors understanding all too well. Real contact between the apparent sides is desperately needed.

5 likes
Reply

helvella I will give a copy of your post to the three friends in the medical profession in person and report back any feedback. I won’t be seeing one of them until the New Year but at least we can have a discussion face to face. I will message you with anything worth reporting. You’re so right about it feeling like a war but being more nuanced than that in reality.

4 likes
Reply

helvella

This is the response one of my GP friends gave today when I queried her:

" I really do think the best approach to medicine is transparency and communication. I would happily share any of my patient notes eg comments on results, with my patient. Indeed, most of our patients log on and can read our notes directly & immediately.

Of note, new data protection laws planned for May 2018 will mean that all patients can request copies of their notes/ results, within 31 days and free of charge.

If the result appears out of range, please challenge the clinician to explain their interpretation. If not confident to do this, maybe contact the practice manager to make enquiry on their behalf?

It may well be that there is a ‘doctor educational need’ leading to a ‘patient unmet need’ but myself, and all the colleagues that I have, would welcome the feedback and the chance to learn & improve."

2 likes
Reply

Kipsy,

That is a good attitude. Perhaps if more GPs made it easier to challenge constructively, as here, the process would improve? Would it help to say something like the above on the surgery wall?

Where a patient feels ignored and their opinion unwanted, it leads to a nearly complete lack of information flow, distrust and, in the end, worse treatment.

Reply

What a great idea about displaying such sentiments for all to see in individual surgeries' waiting rooms perhaps. I am sure more people would feel empowered by an explicit statement. Am I right in thinking that each GPs' practice has some sort of patient feedback/ liaison group? I know my mum sits on some kind of advisory committee although that's probably far too grand a word for it. It's people in those positions who could push this idea perhaps.

1 like
Reply

Kipsy,

Would probably come across better than meaningless mission statements... :-)

1 like
Reply

I've been following the forum for about a month now, and find some of the posts really shocking!

What I would suggest is that you contact Thyroid UK to ask if there is anyone you could highlight these posts to. Thyroid UK can then compile a list and take them forward to government/GMC as evidence, if the could ever use it.

8 likes
Reply

The author of the original post in this thread is helvella. Helvella is one of the volunteer administrators for this forum which is run by Thyroid UK. You could say that it is Thyroid UK, via helvella, that is asking for ideas about how to deal with these appalling results that are getting repeatedly ignored. In other words, Thyroid UK is well aware of the problems that patients are having, but nobody is yet clear on how best to deal with it.

8 likes
Reply

I don't know how embedded the admins on this site are within the day to day running of Thyroid UK as a charity, but if they are closely working alongside, then it is still worth compiling the posts (print outs etc) as an evidence box to argue for further training.

Could also be worth contacting the posters to ask them to write about their experience in a letter.

4 likes
Reply

Cooper27,

Admins here are simple volunteers who agreed to keep an eye on the forum. No training, not medically qualified. Our role is very much like the moderators of many on-line forums - get rid of spam, defuse anything nasty, etc.

I expressly do not want to impose on the posters - they are often going through things that make even writing their original posts very hard.

Thank you for responding - all responses help.

7 likes
Reply

It's alright, I wouldn't intend anyone to be pestered, just if when we suggest people write a complaint letter to their GP, they also send a copy to X at Thyroid UK as well. But just copies of their posts would help.

1 like
Reply

It would be nice to have a website just for thyroid docs/endos(similar to healthgrades) where the doctors are listed and patients can post their experience with them. Then we could at least know which ones to avoid.

1 like
Reply

scottbank,

There are huge problems with that idea - starting with legal issues of defamation/libel/slander/etc.

However, it would be great of it were possible.

Reply

How do they do it in the US with sites like healthgrades.com? People rate doctors and leave a lot of negative comments too.

1 like
Reply

Cooper27, On the main Thyroid UK website, there is a form for 'Submitting your story'. This is one way that patients can easily send their experiences directly to the Thyroid UK charity. thyroiduk.org/tuk/get_invol...

6 likes
Reply

That's sort of what I was meaning! Well maybe we can share this link with people on the off chance they'd fill it in, no obligations.

3 likes
Reply

I think your suggestions are very sound, but there is the problem of the medical culture and its inhibitory effect on the actions of conservative individual professionals, even if they could break ranks anonymously.

There is also the problem that medical disasters, even where large numbers of patients are concerned, happen in private, behind the useful barrier of patient confidentiality. But consider what happens in the event of an air transport disaster: every piece of available evidence is examined thoroughly, and hard questions are asked of all involved parties in order to determine the causes of an accident and its possible remedies. Formal flight procedures are updated frequently as a direct consequence. We need this sort of system to apply to healthcare.

8 likes
Reply

Helvella,

Even more annoying when the GP or endo providing poor care tells the undermedicated patient with ferritin/iron, vitD, B12 and folate deficiency that their thyroid is good, ignores their vitamin and mineral deficiencies and tells them they're mentally ill!

It seems to be increasingly common for endos to reduce Levothyroxine from 150mcg to 25mcg because TSH is suppressed even though FT4 and FT3 are within range. Of course, a few weeks later the patient is very undermedicated and needs dose increases.

This afternoon a a member posted deficient ferritin, vitamin D, B12 and folate levels with deficient MCV, MCH and haemoglobin confirming iron deficiency anaemia. His GP said the results were 'clinically insignificant'. Last week a member's GP dismissed similar results because GP didn't understand the test results!

I think patient's have to be more proactive and make formal written complaints to the practice manager at their GP practice or to the head of endocrinology or PALS when poor and negligent treatment is pointed out to them and escalate the complaints if they're not dealt with appropriately. Some GPs and endos patently need some retraining.

13 likes
Reply

Clutter,

The other day we might have read here that Toft (the endocrinologist) now avoids 25 microgram dosing when initiating treatment - as it might be worse than not treating.

Perhaps the same its true in reverse? That dropping to 25 is worse than dropping to nothing - at least in those with some thyroid function.

3 likes
Reply

Helvalla,

I don't think I saw that. He doesn't mention 25mcg in the Counterblast article rcpe.ac.uk/sites/default/fi... It's never made sense to me when people have said 25mcg might be worse than nothing. If TSH is only mildly elevated I should think 25mcg would be fine.

2 likes
Reply

Clutter,

The argument is that the impact of the 25 knocks down the TSH such that the overall effect is negative in terms of thyroid hormone in our system.

If we view it simplistically, we might assume that taking 25 would reduce our own production of T4 by, as near as possible, 25. However, there are profound differences such as the 25 we take coming into our systems within a very short time.

2 likes
Reply

Helvella,

So wouldn't 50mcg knock down the TSH similarly?

2 likes
Reply

Clutter,

50 might knock it down as much, or more, but the 50 itself might be enough to start clawing back in terms of total thyroid hormone available.

4 likes
Reply

The problem, as I see it, is that there are no suitable national guidelines and treatment protocols that doctors should follow. Although the BTA publish guidelines for treatment of hypothyroidism many on this forum would disagree with them so there is discordance between guidelines and patient experience.

Levothyroxine and other thyroid hormones are so fundamental to thyroid patients' quality of life and ability to participate economically that knowledge, quality control, patient empowerment has to be central to any thyroid treatment guidelines. In my view, patients should have informed, consenting control of their medication and blood testing like diabetic patients do.

NICE has not produced any guidelines (they plan to next year) and thyroid patient organisations are nervous that they may simply reinforce the existing poor practice.

NHS England seem to accept BTA advice without any questions. BMA seem to have half an idea about treatment but not an adequate approach. The CQC don't assess clinical approaches to conditions. Healthwatch haven't the clout to implement changes.

What would it achieve to make a list of Endo's who reduce patients' levothyroxine to 25mcg from a much higher dose? Since there are no national guidelines what would Doctors be held to account against? Why would a colleague report a fellow professional who is practicing according to their judgement in the absence of definitive guidelines?

As for low vitamin levels, is there anything in any of the current thyroid treatment protocols to indicate that this is part and parcel of thyroid disease? Is there any suggestion that gut dysfunction is prevalent as a result of taking levothyroxine and therefore needs dietary changes or support?

It's currently unclear who's responsible for testing nutrient levels and ensuring thyroid patients have adequate vitamins. Is it the GP, the Endo or the patient? Who is responsible for ensuring the patients' levels stay optimal? How do doctors know what is optimal in thyroid patients?

To make a difference you have to inform the NICE guidelines.

Would it be possible to put together factual data, ie numerical data and publicise?

5 likes
Reply

Nanaedake,

There is quite a bit of evidence of gut dysfunction in hypothyroidism.

The co-existence of AITD and other diseases possibly of autoimmune cause has often been reported, and suggests some intrinsic abnormality in immune regulation. An extensive review of these associations has been published (271) and extensive population data bases have clarified the strength of the various associations (272). A striking association is with pernicious anemia. Perhaps 45% of patients with autoimmune thyroiditis have circulating gastric parietal cell antibodies (273), and the reverse association is almost as strong (274). Up to 14% of patients with pernicious anemia have primary myxedema, and pernicious anemia is increased in prevalence in patients with hypothyroidism (275).

Another strong association is with celiac disease, which is found 3 times more commonly in patients with AITD. Intriguingly the autoantibodies which are the hallmark of celiac disease, directed against transglutaminase, can bind to thyroid cells and thus could be implicated directly in thyroid disease pathogenesis (276). The association of Sjögren’s syndrome and thyroiditis is not uncommon and both systemic lupus erythematosus (SLE) and rheumatoid arthritis are also significantly associated with AITD (277, 278). A high frequency of antibodies to nucleus, smooth muscle, and single-stranded DNA (26-36%) is found in AITD (279). Although multiple sclerosis has stood out as a putative autoimmune disease which is not obviously associated with AITD, meta-analysis has revealed there is an odds ratio of 1.7 for AITD in these patients (280).

thyroidmanager.org/chapter/...

And that is just what I knew to find within two minutes! :-)

5 likes
Reply

Yes, I know gut dysfunction is evidenced in research documents, Helvella, but it's not in any guidelines for GP's or Endo's to act on as far as I'm aware. Or maybe I'm wrong???

Also, the research is always aimed at people with AITD but what about people without a thyroid or reduced thyroid due to cancer? It's never raised or researched as far as I'm aware.

2 likes
Reply

Or, like me, with no identified cause. :-)

2 likes
Reply

It's clearly shown in these BTA guidelines.......box right near the end

That low vitamin D, folate, ferritin and B12 are all possible causes of persistent symptoms in euthyroid patients on L-T4

onlinelibrary.wiley.com/doi...

Trouble is most endocrinologists don't seem to have read this

NHS medical treatment is far too compartmentalised. No one looks at the whole patient. Endocrinologists have little interest in considering poor gut function, gluten intolerance or low vitamins

9 likes
Reply

Thanks, that's useful to read the bit in the BTA guidelines that you've highlighted re vitamins.

So it needs to be clear whether it's the Endo's job to look into this or the GP so patients don't fall between two stalls.

There needs to be a clear plan of investigation for every thyroid patient when diagnosed. Then regular checks that include these common areas of deficiencies for any patient who is symptomatic even if doc thinks symptoms may be something else.

There need to be clear guidelines on what is sufficient vitamin levels for thyroid patients as clearly the NHS range is inadequate for many patients to feel well.

5 likes
Reply

Nothing on gut dysfunction though as far as I can see.

1 like
Reply

Yes they have no idea why vitamins are low

They are low because T4 mono therapy does NOT work for many. Otherwise why would Vitamin levels improve so drastically when on T3

Or fall so drastically after T3 stopped.

2 likes
Reply

Do you know any research on this SlowDragon?

1 like
Reply

Box 1 does identify

Nutritional

Vitamin B12 deficiency

Folate deficiency

Vitamin D deficiency

Iron deficiency

By implication this could be due to gut issues.

Reply

There is more to it than that though because taking levothyroxine is the single biggest factor in Small Intestinal Bacterial Overgrowth, SIBO. This is not acknowledged anywhere. Taking levothyroxine orally actually causes gut dysfunction according to recent research. Not sure which Admin posted the document.

4 likes
Reply

Absolutely agree that there is far more to it.

3 likes
Reply

I still think this is BECAUSE it's T4 mono therapy. Or even when on combined therapy or NDT medics tend to under medicate keeping patients slightly hypo

The stomach either needs T3 directly or needs to be at very specific temperature for enzymes to work.

Any T3 or NDT tends to improve temperature by at least half a degree, if not more.

Our thyroid wouldn't make T3 if we didn't need it

SIBO, candida, gluten intolerance are all possibly result of reduced stomach acid

Vitamin D is very often depleted when hypo, perhaps because we are living off adrenalin instead. Vitamin D is not a vitamin but a pre steroid hormone

Low vitamin D apparently also affects the gut biome. It disrupts the production of all vitamin B, which doesn't come from food, but is made in the stomach

See this link

drgominak.com/sleep/vitamin...

This film refers to importance of gut

drbradshook.com/understandi...

4 likes
Reply

May I throw in pellagra (inadequate niacin - vitamin B3)?

japi.org/April2003/Myxoedem...

2 likes
Reply
2 likes
Reply

That's why taking B complex, not just folate is important

3 likes
Reply

I wonder what the hell they do read to become so bad at their jobs! 😡

8 likes
Reply

"...patients should have informed, consenting control of their medication and blood testing ..."

Yes, yes, yes!

Reply

As I understand it the Thyroid UK office is trying to compile a list of patients who have had T3 removed and the subsequent disasterous results to take to the NICE meetings

Personally I think it would be worth Thyroid UK trying to compile a list of hospitals where this is happening, but ideally also asking patients the name of endo responsible in each of these cases.

If the name of the hospital is known then this can be taken up directly with relevant CCG/healthwatch

It may be that many of the worst cases are going through the same hospital departments and endocrinologists

It's a tall order, for a tiny volunteer charity to take on

There are over 2.2 million patients in the U.K. on Thyroid replacement hormone.

It really is a HUGE problem and seems to be getting much worse

The number of young women (often thin) with Hashimoto's being really terribly treated is heartbreaking.

Similarly the number of RAI or thyroidectomy patients whose life is ruined due to inadequate treatment afterwards, it's completely unacceptable.

10 likes
Reply

I agree that some recent posts have been very disturbing. I doubt doctors would shop one another anonymously (the one that reported Shipman for requesting excessive death certificate signatures was simply brushed off. In fact, it was only the matching typewriter to the forged will of Kathleeen Grundy that really shopped him and that was only because her daughter was a solicitor and she pursued it knowing what Kathleen Grundy actually owned and would have included in her will which would definitely not have been a shabby typed out thing ie the one Shipman concocted to get her money, without that clear evidential connexion to the will he could have got away with it).

Could these doctors not be named and shamed/stats collated by area/practice and some sort of more robust action taken? It would be helpful to get an idea of how widespread it is, and if are there serial offenders.

They need to be exposed and their cloak of secrecy removed. I presume this might count as slander making it difficult to single them out by name, but if they are transgressing proper guidelines and causing unnecessary suffering and long term irreversible damage to patients health, people ought to know.

I had a dreadful dentist and one person just described him in a review, giving details of his unfortunate experiences so it was obvious who it was I switched dentist fast. I had already refused to let him start filling my teeth as I believed quite unnecessarily. I only have 3 tiny fillings from my teens why the dickens would I need more now?

Some serious action is needed. I hope all those concerned write to their MP’s complaining about their neglect. I have given mine a belly full! We have to keep at it like water dripping on a stone.

7 likes
Reply

TSH110,

Just the other day we had one consultant who had tried to shop the rampaging breast surgeon on the very best technical/medical grounds - interviewed for television. He too was dismissed. But multiple shoppings might be more difficult to ignore.

Certainly I don't think any new process would miraculously clean out the Augean stables. But something has to change...

3 likes
Reply

helvella

Yes numbers do add up to something less easy to dismiss that saying it is just one word against another. I think all avenues should be tried to tackle medical negligence as exemplified by the recent and very shocking posts you have alluded to, including an anonymous reporting system. There are brave people out there in the system who will speak up against mal practice.

3 likes
Reply

Well to challenge you need evidence. Could someone post a survey on this forum for those in the UK to complete that would give good data about thyroid care and treatment that could be used to evidence:

- Taking thyroid patients off T3 resulting in increased symptoms.

- Endos or doctors expressing opinions of hypochondria or mental health symptoms when the patient has low vitamin levels or has had their levothyroxine dose compromised.

- Reducing thyroid meds drastically making patient ill.

- telling patients they are too thin to be hypothyroid.

- ignoring patients' vitamin deficiencies.

- patient becoming ill with change in levothyroxine formulation before 2015 and after 2015.

6 likes
Reply

Every so often doctors have to do revalidation to see if their understandings of medicine in their disciplines are up to snuff. They are usually conducted by their designated body. However if that designated body has outdated principles governed by a few individuals or is not interested in seeking new information (unless it's a pharma-sponsored scientific paper ;) ) what hope do you have? Many discoveries can take years to be accepted and filtered down to your grass roots GPs.

Some GPs are still advocating low fat diets and are very fond of saying that you get all the minerals and vitamins that you need through a healthy diet alone. Or humour a patient by telling them to take a supermarket multivitamin.

I'm afraid that's just not true any more due to over-farming / pesticides etc. You could also add in GMO as well though the only GMO foodstuffs are imported into this country. Do you know the source of your food? Or what it is covered in?

As an example, doctors tell us that eating a couple of brazil nuts will sort out your selenium. That used to be the case but not anymore. Lab testing of brazil nuts purchased from your grocery shop are depleted of selenium because of the intense cropping practices.

You have to buy "certified content" nuts and those can be more expensive because they come from small areas and small independent outfits that do not supply the huge food importers.

The bald truth, well I'm convinced, is that autoimmune conditions in many cases derive from a damaged gut and stuff at a molecular level sloshing around in the blood that shouldn't be there hence the body's immune system freaking out.

Heal the gut and it helps massively. Many of us know that but there are many doctors who are deeply suspicious and let's face it...patients who cheerfully indulge in making their own fermented "medicines" and eat a diet leaving out certain culprit foodstuffs are not going to make the pharma companies rich are they ;) and are openly scoffed at by some as being a bit barmy.

The human body is not nor will it ever be, one size fits all as far as medical treatment goes.....ever!

13 likes
Reply

Helvella, I have been thinking about the appalling stories that have been written on here over the last few months and how GPs seem incapable of reading/interpreting blood results and reckless in reducing levo or T3 scrips with no idea of the consequences.

It would be useful if posters could be directed to a survey or to TUK to report these incidents. A system that asks for the GP practice or the Hospital where the doc or endo works. I think a lot of docs need re training in how to interpret blood results. Some of the stories on here definitely warrant a formal complaint to practice manager, as patients lives are in danger.

A couple of template letters, one re blood results, one re medication reductions might be helpful. It is really hard when struggling with your health to get thoughts together and know what to write and who to send it to. I do feel TUK somehow needs to start compiling malpractice stories.

I suppose the real issue is if people want to remain anonymous and we don't know where they are in UK. I will keep pondering!

8 likes
Reply

I have recently been adding this to any reply I give to someone who has had T3 removed

"Thyroid UK are collecting evidence of malpractice due to removing clinically needed T3

Please email brief outline of this. How T3 improved you and the subsequent disaster since it was stopped. I would include the dire vitamin levels "

dionne.fulcher@thyroidUK.org

Email Thyroid UK also for list of recommended thyroid specialists

But obviously don't know if they do ever let Thyroid UK know

A template would be good

Just thyroid dose and levels and vitamin levels before and after

4 likes
Reply

I found the patronising, ill-educated and dismissive responses from my GPs incredibly frustrating and upsetting. Like so many others on here I took myself away from their so-called 'care' and read up on the condition myself and bought the levo and T3 either over the web or over the counter on holiday. I was massively assisted in finding the confidence to do this from the information on this forum.

I feel much better now, and continue to learn more and more. However I feel vulnerable and precarious in self-treating, but wild horses would not drag me back to my GPs ever again to discuss this. I feel angry to be put in this position, but thankful that I had the personal resources and kindness of the advisors on this forum to enable myself to self-diagnose, monitor and treat. Others are not so fortunate.

There definitely needs to be some whistle-blowing, and now I've got a bit more oomph back and having read this post, I'm going to get cracking. E.g. you can simply leave a Google review of a GP practice who has let you down. I'm going to do that right now!!!

18 likes
Reply

Done :-)

5 likes
Reply

richar03 Google reviews of GP Practices? How do I find these please?

3 likes
Reply

Oooooh, I typed Google review followed by name of surgery and it threw up reviews. Well I never!!

Of course the million dollar question is whether CCGs trawl through these and have them removed as they do with the iwantgreatcare website, have personal experience of this despite my review not breaching any rules.

3 likes
Reply

CG,

I was advised by NHS in a phone call to see reviews on NHS Choices website re gp surgeries etc. I replied that the worst reviews can be deleted at the request of the gp surgery (I know of individuals who experienced this), and the best reviews can be anonymously left by gp surgery staff and their friends, family and acquaintances - which is obviously a bias and a conflict of interest. The NHS advisor confirmed that the worst reviews, or bad reviews, can be deleted from the site at the request of the gp surgery. In other words, the NHS website is a nonsense because it is, or can be, slanted in favour of what the gp surgery wants.

Many people are under the illusion that all of the positive reviews, on the NHS websites, are genuine reviews. 😟

8 likes
Reply

Nothing surprises me any more Londinium and I wish more patients educated themselves.

2 likes
Reply

I agree. Also, of course, a rating of 4.5 stars based on 7 reviews (for example) is basically meaningless.

3 likes
Reply

I'd like to do this too. I've tried twice to review my local practice via their NHS website, using polite but blunt terms, but both disappeared. It's a mystery... ;-)

7 likes
Reply

Thank you, Toyah:

It's a mystery to me

shot in the dark

The big question mark in history

Is it a mystery to you?

4 likes
Reply

:-D That dates you - and me too.

5 likes
Reply

Wasn't it pronounced mythtery?

Dating myself now too! :D

5 likes
Reply

You're right - I can't hear that song in my head without the lisp. :-D

3 likes
Reply

Hillwoman,

Please see my reply to cinnamongirl above about this. 🖖🏻

2 likes
Reply

Thanks, Londinium. The system is even more corrupt than I thought!

2 likes
Reply

It's utterly appalling to be left with effectively no NHS GP care, because of a breakdown in patient/doctor relations over thyroid diagnosis and treatment.

1 like
Reply

helvella thank you for opening up a discussion on a subject that is of great concern to many of us on here. The one thing I would say, and speaking as someone who has gone through formal complaints processes, is that this will be an uphill struggle for any recognition let alone acknowledgment of poor doctoring. Remember, doctors stick together.

It's a case of being smart including ultra careful use of terminology. Let's all put our heads together and come up with something to stop this travesty.

7 likes
Reply

We must factor in the 'god complex ' and the arrogance - we witness time and time again. Does that go back to schooling when certain bright kids from certain schools are told they are so wonderful long before they go to Med School ?

The programme currently running about Junior Doctors is quite refreshing - apart from the constant referrals to google :-) Maybe we should hope for more GP's doing just that.

Could someone develop a Thyroid UK App for the GP's smartphone - lots of clever people on this forum - but I am not one of them ! I will happily make a contribution :-)

8 likes
Reply

Marz I don't even own a smartphone, but your idea for a Thyroid UK app is brilliant. :-) What we need is a clever teenager who can be offered this project as an incentive - work experience, college credit, or something like that.

3 likes
Reply

Well done hellvella! 👏🏻

You beat me to it. I literally had to take a day off just to recover from the horror of what I read this week.

However my first point would be

❗️**DON’T make a COMPLAiNT to your surgery/GP**!!!

Let me explain ... some patients who have evidence of serious negligence (such as those on here who have had doctors ignore MASsive deficiencies when even the blood test ranges have shown it to be deficient absolutely have a right to complain- and more importantly - have the evidence to complain- and should! That’s basic negligence whichever way you look at it. Referral to mental health is the disgusting cherry on top and should be reported too.)

But, as other users have posted above, those who are In the blurry grey area of poor management, unsympathetic treatment by doctors and dismissing symptoms will face a far harder struggle to have their complaints heard. As the problem here is poor understanding/awareness/ training and crucially GuIDELINES.

The reason I stress to these patients NOT to complain is simple - they will be vilified by the surgery /doctors. Marked as troublemakers and absolutely nothing will change in terms of guidelines or treatment. In reality, their treatment will either suffer further ( and we will be party to this happening to these poor souls) and doctors may be even more unwilling to listen to hypothyroid patients who raise similar concerns. Their backs will be up!!

Encouraging everyone to protest on an individual basis Directly to their surgery I believe will not work. It needs to be collated as suggested above and presented to an advocate charity/lobby group who can target the actual decision makers/health watchdogs.

🔆I could go on and on and on ( and probably will in the near future!) because I have thought about this for months/years now and am slowly working towards a plan/research on an approach to how we could tackle this.

I will hopefully write something up in a format that’s easier to discuss than on here and possible templates too if I can.

I’m an optometrist by profession but come from a family of multiple health professionals, including doctors pharmacists, nurses, midwifes etc etc and I’m also sad to say I can see the same poor understanding across many professionals but crucially I feel I understand the pressures within these practices that have allowed this situation to proliferate.

(I’m not suggesting I have a singular advantage here, I’m aware there are many health professionals on this forum too who may dis/agree, I’m just responding to those who have stated they have no medical training or do not work in these areas of healthcare/ organisations so may not be privy to seeing ‘the other side’)

🔆 just to summarise my main thoughts;

1) diabetes, cancer, heart disease, even mental health(!) has had significant public awareness campaigns and are embedded in people’s consciousness. I believe thyroid, but crucially autoimmune/chronic disorders, need to be highlighted in the same way.

2) Crucially NUTRITION and diet/lifestyle is being pushed by government to tackle obesity... we could certainly jump on the bandwagon and highlight gut issues/absorption and vitamin mineral deficiencies that were once thought to be extinct/developing world issues and show how prevalent and EASY to treat these can be- preventing more serious health conditions.( win win?)

3) this then leads to further patient advocacy and people being able to manage their conditions better themselves. I believe we need to encourage and ‘train’ people how to present their symptoms to doctors/health professionals. Trust me- the massive differences in approach and treatment can simply be a matter of words. (Think of it as job interview training- there is a knack to how you present your symptoms and complaints)

4) readdress our thinking. As wide ranging and overlapping something like hypothyroidism can be- it is also just one of many conditions that doctors and the NHS comes across. Sometimes it’s easy to be blinkered and focus on a single (personal) issue for us without considering all the other restraints on the medical system. We need to be clever not emotional about this. We need to show how it is beneficial to them to address chronic discorders properly from the start and not let it worsen.

5) leads to my last point. The NHS is a wonderful thing !!! And most doctors usually want to help and treat their patients. Some become complacent, jaded, not up to date with certain specialities etc some are just plain arrogant and greedy we know! But on the whole we should remind ourselves of why many doctors came to this profession to begin with. That they are also under pressure !

- not enough time with patients (10min Gp appointments !) (re-read point 3)

- funding cuts and hands tied with testing guidelines

- individual surgery pressures

- poor computer and medical records systems! They often can’t look at your whole history in full or in sufficient detail- or don’t have time. This forum itself provides a far more holistic view when we can link blood tests and symptoms in a more presentable way. Appointments are symptoms led- Gp won’t ask all the Qs- you have to provide the information.

🔆We need to remind ourselves of this whilst we’re grumbling (quite rightly!) and I’m not criticising anyone here! The NHS has MANY flaws but my point is simply this...

If we create a ‘them and us’ situation it’s a lose-lose situation. And we risk the NHS failing further, not improving (and God forbid we just add to the cry of privatisation)

We also risk people turning away from doctors and qualified professionals /reliable sources of care and falling foul to the myriad of scams/detrimental treatments out there. (The flip side is there is a huge source of information out there that is beneficial to us outside of mainstream ‘big Pharma’ but it requires a critical mind that not everyone may have developed)

🔆If we can get to a place where we work together to improve guidelines and protocols and have greater communication - we may succeed. Grass roots approach can work - but ultimately until there’s a top down approach, many GPs hands will be tied, and many patients will struggle further. Targeting their policy makers( GPS and endos and immunologists) will be easier.

It may come to a suffragette style movement at some point in the future but I believe we are a long way off that! You only need to look at the recent doctors protest against Jeremy hunts plans to see it is fractured from within and from external factors.

Basically - you can catch more flies with honey... ☺️

I would say:

A) approach your surgeries and ask if they have a patient feedback group/ protocols that they use to help them improve services. They often do- get in there!

Same with local CCGs I believe.

B) And also check if your surgery has ‘patient access services’ where you can view some of your records and your blood tests online- we should recommend this for all of us!

C) Simultaneously we need to approach NiCE, BTA, and all the other key groups that can lobby on our behalf. It has to be a TOP DOWN approach for changing policy.

I don’t even know if anything I’ve said makes sense, sorry for the long post, but I felt the need to highlight some thoughts I’d had particularly of how we need to react as individuals. I wouldn’t want any of us to suffer further, in the name of furthering our cause, unnecessarily

I’m going to also get some of my GP friends and relatives to give their feedback and see if they can shed more light on this.

Good luck to all of us- have a happy weekend!! 🙏🙌🏻

13 likes
Reply

Saya85 I believe it is my right to make genuine complaints to a profession that my taxes fund. It's not my problem if said doctors are precious about being criticised for genuine substandard doctoring.

6 likes
Reply

Absolutely! Like I said if you have a genuine complaint go for it! Have evidence to back it up.

My only point which I explained was sometimes ‘complaining’ won’t get the result you think it will. And unfortunately I’ve seen what being labelled a troublemaker can do. So it was just a friendly warning to be careful how you approach it.

Like I said in my post- I’m not criticising anyone - do what you feel is best- but a call to arms doesn’t always work sadly 😞

3 likes
Reply

Saya85 definitely agree with your point re complaining, I've dealt with a Practice Manager, the GMC, the CQC and the PHSO and it's earned me a code on my records. However that does not mean that one should ignore medical negligence of any kind, doctors need to realise that as our taxes are paying for their wages (ooooh, I'm going a bit Daily Mail) then we're entitled to kick up a fuss.

What is very revealing though is the content and decisions of Fitness to Practice hearings - paedophiles, sexual predators, drug supplying/selling, falsifying records etc etc. all feature. Why do they presume that this behaviour will not be challenged?

3 likes
Reply

😂 @daily Mail. I had to delete that years ago just due to stress and paranoia!

Yes that is a very valid point. The NHS needs to work for US, not the other way around.

If it’s negligence go for it@complain.

If it’s poor management- we need to target the right people or nothing will change in management or treatment.

That’s horrifying that your records have been coded. You do wonder sometimes these days if your health is a burden to them rather than their day job!

3 likes
Reply

I'm not surprised Saya85 that you keep away from the Daily Mail although in its defence they do sometimes have features on hypothyroidism where you can guarantee a large number of responses from both the informed and the stupid.

What really rattles my cage is that one of the GP Partners has ordered GPs not to refer me for hospital appointments due to my divulging a Lyme disease diagnosis and that I'm under a private American doctor. This is a common scenario I understand and have informed my MP.

You're right though, health has become a burden to them and wonder why they came into medicine in the first place.

2 likes
Reply

I am not supporting privatisation in any way, but isn't part of the problem, here, that the NHS/patient relationship has become so nebulous and ill-defined. If you pay a mechanic to service your car or an accountant to balance your books, there is (usually) a clear understanding of what you expect from them in return for the fee. There is no onus upon GPs to deliver in the same way.

Hidden I'm just getting ready to write to the PHSO, and feeling nervous about that now! :(

I certainly agree with the original comment made by helvella, that struggling patients do not need the added stress and difficulty of pursuing issues of poor or nonexistent diagnosis/treatment, which should never have occurred in the first place.

I wish I had answers.

3 likes
Reply

Saya85 You make some very interesting and worthwhile points. I hope you won't think I'm being critical if I point out that many of us are well aware of the issues you raise, have been involved in well-organised campaigns (e.g. ITT, also the petition to the Scottish Govt.), and do have the education or professional experience to allow us to use our critical faculties on information gleaned from the internet.You will see many links to papers on PubMed and other professional sites.

Sadly, the 'them and us' situation you describe is not one that patients have created - it's the barrier we walk into whenever we meet medical and healthcare professionals.

7 likes
Reply

Not at all Hillwoman@me minding ☺️

And Absolutely you’re right- sorry I thought I had made a point of saying in my post I’m aware many on this forum are health professionals or understand these issues and may dis/agree etc and are far more knowledgable than me/have been working on this for far longer.

I also did state that there is a host of information good and bad on the internet and many do employ their critical faculties to assess what is true and false. But sadly there are also many who don’t or are swayed very easily...it’s sad that people even have to turn away from their doctors (myself included!)

I’m just sayin whilst we’re encouraging people to empower themselves To self research we have to bear in mind the pitfalls to it and not everyone is always in a position to do so. Isn’t that why we support qualifications to begin with?

I see the cynicism when patients come to me because of what they have heard of others experiences/myths spread and although it’s good to not follow blindly and question your situation but sometimes it can make the job a whole lot harder than it has to be.

Either way I was just offering my two pennies worth trying to make sense of what is such an exhasperatig situation and I can’t believe we’re even having to discuss this. It makes me so sad.

I should add- apologies in advance if anyone takes offence to what I said- it was scripted whilst in bed this morning! I certainly have no intention to criticise others much less suppose that I have all the answers!!

I have learnt so much from this forum alone and everyone’s wonderful feedback and advice and pointers that I’m eternally grateful ☺️🙌🏻

3 likes
Reply

That's fine, Saya85 and no offence taken.

What I do find troubling - in fact, dismaying - in your remarks is the admission that patients who complain will be subject to discrimination. I know this, of course, and I've been subject to it myself - some of that discrimination was entirely personal, and medical care was withheld for these reasons, even before I considered making an informal complaint. What alarms me is the low standard of ethical and professional behaviour among the people we go to for help when we are sick.

6 likes
Reply

Wow@withheld treatment. That truly is horrific.

I think where it is obvious the doctor is being negligent such as ignoring test results or reckless medication change/withdrawal you have to complain.

But the problem is often where there is a ‘grey’ area. Possibly your research versus their training. Unfortunately sometimes it does come down to a God complex or as some users have commented before “at least you don’t have cancer (!)”

I think chronic conditions- known to be lifelong and with no cure- tend to be viewed as ‘inevitable’. Patients complaining tend to be viewed as nuisances/ exaggerating/wallowing in self pity/ obsessed with their conditions.

For that reason there is a lot of apathy and indifference from the medical profession sometimes. Sometimes it’s exhasperation from themselves because they don’t have the answers!

And in the grand scheme of things - compared to patients who may be terminally ill or have life threatening illnesses it’s a case of prioritising their money/efforts. Firefighting so to speak.

Like in hospital If you’re ‘stable’ it means you’re not dying. Move on to He next emergency. The effort it takes to make someone ‘well’ unfortunately is a whole more complex!

Also I’ve found if you are seeking to be threatening/kicking up a fuss with your complaint (illegitimately in their minds) because of differences in opinion of treatment rather than negligence, it does get them on the defensive. Because formal complaints thatgo through GMC are scary(!) often you have managers and those in higher authority scapegoating doctors and other people. Ita a horrible situation all round. 😞

2 likes
Reply

It certainly is a horrible situation. What I hope for - idealistically, foolishly - is a healthcare system that will genuinely work with patients to help them achieve optimal health, so they can participate in their communities and get back into work. For that to happen, there will need to a mass puncturing of egos, plus a properly resourced NHS.

6 likes
Reply

I always believe in writing to the person concerned i.e. Doctor / Endo or whatever. Enclose a copy of your blood test results asking for a comprehension explanation as to why this or that course of medication has not been taken.

If no reply is forthcoming repeat the process again until you have an answer and then post on this site without the name of the professional of course. Create a file with dates and copies of your blood results and letters sent and replies if any received.

Doctors/Endos will always feel threatened if reported to a third party first. Let it be after the third letter if no reply is received over the course of six weeks or so.

6 likes
Reply

Personally I think the whole system needs an overhaul.

Not a quick fix by any stretch of the imagination.

a) current structure is based on treating symptoms/condition labels not patients, ie there is no overview but a mentality that only allows one issue to be raised in an appointment with a GP so links are lost.

b) education of medics needs to ensure that they understand that there is a lot that isn't known about most conditions (including thyroid, vitamin and mineral deficiencies, diabetes, mental health, IBS ...) and have the confidence to consciously acknowledge this to both themselves and their patients.

and patients need to understand that GPs and even specialists may not have all the answers and that it isn't a sign of incompetence if medics admit that - quite the opposite. That may not apply to many members of this forum but I can think of many members of my family and friends who fall into that bracket.

c) communication between labs and GPs needs to improve - GPs need to advise labs of some patient history - known conditions and possibly family histories. Labs need to make it much clearer when it is known that a normal range cannot be used as a good treatment guide after treatment has started (eg thyroid, B12 and probably a bunch of other conditions). They also need to provide a lot more and a lot clearer guidance on interpreting results.

d) NICE: personally don't think I've ever been impressed by the quality of guidance provided on any condition that has been relevant to me - the general stuff is just too general - there is little cross-referencing of conditions, even when you delve down into the detail - back to being too much around symptoms/condition labels. Some of the guidance is far from clear (certainly the case with B12 deficiency - which to add to the confusion is located under blood disorders - really just a recipe for confusion and misconception.

Its based on literature reviews, which are often quite limited and the process for updating even this approach really isn't adequate to the pace of research findings ... let alone the risk of bias (eg one-size fits all and keeping costs down - even when talking about medications that cost pence rather than thousands/hundreds of thousands of pounds).

3 likes
Reply

🙌🏻 Absolutely.

I do think the problem is the way that the whole system is set up.

GPs should be acting as functional doctors looking at you holistically and treating you as such. Unfortunately they have neither the full training nor the time/funding to do so.

Then if you have a problem deemed serious enough you are referred to a ‘specialty’ - you are locked into one narrow view of medicine with specialised treatment in only one area. They seem to forget that if you have a heart problem you may have other issues - after all- our organs are connected?! Our bodies are whole complex machines.

Cross referencing between consultants is dire.

The system has flaws and needs a shake up- but I think there needs to be a better bridge between primary and tertiary care. Secondary care is failing at this point because of the system design.

Just recently I had to refer a patient to three different ophthalmology wards because he had a problem that would need consulting between cataract corneal and glaucoma specialists. And referring to one just didn’t address his issue- and that’s within one ‘speciality’. Bit mad really

2 likes
Reply

House, MD famously reminded us, in his incomparable growl, "Pick your specialist, you pick your disease." It's the same with blood tests. Labs only check for what the doctor requests (and sometimes not even that). There is no culture of exclusionary testing or whole-patient diagnosis.

BTW, apologies to anyone in this thread who feels that my comments are stating the so-and-so obvious or nonconstructive. After an appalling 2017 with my GP, I am aware that I am, to a degree, venting.

1 like
Reply

Gambit62,

I'll probably regret saying this in a year or so...

At least with NICE guidelines there is an official channel for complaining about them, and putting your view forward.

Several thyroid documents are treated as official guidelines but there is absolutely no way of getting a complaint through! Several had dates by which they should have been reviewed - that have passed - and yet they stay there affecting all of us.

Yes - the whole concept of medicine requires rethinking from the ground up. Including the very basis on which substances are classified as medicines which cannot be obtained without the agreement of a doctor.

3 likes
Reply

It isn't just which medicines are classified as prescription only that needs an overhaul - it's the whole licencing process - which is actually dependent on producers applying for licences rather than having a genuine review process for safety - hydroxo B12, for instance, is only licensed to be used every 2 months because of this - so a lot of GPs assume this means it isn't safer to use more frequently - despite no evidence for any toxicity.

4 likes
Reply

But loading doses are more frequent than that so it is one bit of the the system at odds with another! :-)

1 like
Reply

I agree completely, Gambit62. The licensing situation has created horrible problems in obtaining the DHEA replacement which I need, and there does not appear to be any way of approaching the MHRA for review, unless as a manufacturer. Insult to injury was the fact that when I did email them, the person who replied knew even less about DHEA's status than I did. There is definitely a need for an overhaul of the system.

1 like
Reply

Is there any way a directive could be sent to GP Practices pointing out the relevant NICE guidelines and a request that all doctors at practice read and sign it. Not sure of the machinations tho...

Is BTF on board with all this malpractice? Can the two organisations the NHS recommends patients to for advice join up and initiate something like this?

2 likes
Reply

Helvella,

I have no answers either.

Just got back from walk in centre at local hospital.

Advised to go there, after phoning 111.

Phoned 111 after GP receptionist told me to, because of my symptoms, and because they have no appointments, with GP or nurse, until after Christmas.

When it was my turn, at the walk in centre, I was first seen by a nurse. I explained my reason for being there, ?UTI ?vaginal bacteria infection (I had used and paid for, a self testing swab, from pharmacy advice, it came up bacterial, but two types indicated, see a doctor). I also told the nurse I suffer with Sjogrens syndrome.

I didn't get to tell her that I have autoimmune thyroid issues, because the nurse told me, Venus Williams has Sjogrens syndrome, its just a label, and Venus Williams plays tennis. That it is better to have that sort of attitude. See Sjogrens syndrome as just a label of many little things...

After giving me this appalling, judgemental sermon, the nurse dismissed me to the waiting room... my BP was 200/106 no mention of this, no urine tested....

I was eventually seen by a doctor. He came to waiting room just as my husband had text asking should he leave to collect me now, ... I followed the doctor to the room, asked if he would mind if I just text the word yes to my husband (as it was a fair drive), doctor says, sure, you will get more anxious if you don't... at that point, I couldn't help but think, ah, nurse has handed over her opinion...

I wasn't anxious, she was rattled..

I have started on antibiotics, told to see GP if no better in two weeks, for a vaginal swab. I told doctor, I have one here, you could send? Doctor told me, no, nhs, wouldn't recognise that, they want their own...

I am still feeling unwell, no temperature taken in hospital, think I have temperature... husband just told me, no patients are important in nhs nowadays, I fear he is right...

Anxious? No. I was trying to be proactive. I still don't know what/if I have an infection, according to nhs. Yet, I am told to take antibiotics...

No bloods taken, self test kit was of no use, no temperature taken, I asked if hospital could do swab today, doctor told me, no, GP or practice nurse has to do that.

Please answer me this question, if you can, why are medics giving out labels, if some medical staff believe they are irrelevant?

Furthermore, what could I have done better? Just not report symptoms that are worsening?

NHS HAS LOST ITS HUMAN FACE...

today, I saw not a trace of care. I experienced judgement, and opinions, based on nothing more than perceptions of medics.

During my visit, there were numerous nhs staff, checking out, and admiring, the brand new department we sat in.

Personally, huge tv screens, smart plastic seating etc, are not what I sought, I needed the right treatment plan for my worsening symptoms. The smart room has not made me feel better.

Thanks for reading helvella, the nhs is making me sick! Venting has helped..a little..

4 likes
Reply

Thanks for your like helvella.

If you do set up any type, of patient struggling to get heard, understood, believed... document, please let me be the first to sign up!

Currently, I'm thinking is the nhs system now, demanding that we are very ill, before we will be seen?

What a journey! I have overcome being embarrassed visiting medics. They have stripped my dignity, long ago.. but whilst they are gate keepers to antibiotics, what choice do we have?

If we suffer chronic illness, relying on the nhs, opens us up to getting sicker! Getting what we need is so very difficult!

On a more positive note, I attended my first ever, thyroid support group. How refreshing! I didn't feel I had to prove anything.

The support group, and health unlocked, are our sanity health line. Without them, some medics, would indeed, diagnose madness. What they cannot see, does not exist... I wish they would learn how to listen!!!

Thanks anyway. Your support is much appreciated. X

2 likes
Reply

You may also like...