Help and advice re Hashi's references for PALS ... - Thyroid UK

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Help and advice re Hashi's references for PALS complaint

PurpleNel profile image

Hi all and as always thanks in advance for your time.

I have decided to put in a complaint to my GP. I doubt it will do any good but the final straw has come when I find myself unable to earn a living anymore. This is thanks to their letting me get so ill and leaving me undiagnosed and untreated. Now they insult me with putting 'low mood and anxiety' on my medical certificate to claim benefits (even writing the words 'claim benefits' makes me want to go and hide somewhere!)(And you bet I have low mood and anxiety after all this time and watching everything slip away from me!!)

I was just wondering if anyone has any useful links or official references that would help/support my complaint? Or any advice on what I should put in? (or leave out)?

My main points are that they keep denying I have a thyroid issue but won't do any of the tests or procedures that would confirm it ie antibody tests and an ultrasound (which I was referred for but refused) and they won't accept the private blood tests or the diagnosis of a private specialist confirming Hashimoto's. So, no, they are never going to find evidence of Hashi's if they deny access to anything that would confirm it.

I have started Googling things and I will probably get there in the end after several lie downs, reading something 20 times before it penetrates my brain fog etc but if anyone can give me any short cuts it would be very appreciated.

31 Replies
SlowDragon profile image
SlowDragonAdministrator

2 months ago you had test healthunlocked.com/thyroidu...

Shows TSH over 5

High thyroid antibodies confirms autoimmune thyroid disease

Have you had a further test since then ?

Or was this already 2nd test with TSH over 5

Guidelines are

After 2 tests with TSH over 5

And high thyroid antibodies

And symptoms

You should be prescribed levothyroxine

You don’t need NHS to confirm Hashimoto’s- they completely ignore the autoimmune aspect of thyroid disease anyway

If you’re not on gluten free diet, GP should do coeliac blood test

PurpleNel profile image
PurpleNel in reply to SlowDragon

My Medichecks TSH result is the only one that has been elevated. GP's TSH tests including one in August have always been in range. So I only have 1 over-range result.GP has done coeliac test which is negative.

SlowDragon profile image
SlowDragonAdministrator in reply to PurpleNel

So are you now on strictly gluten free diet and working on improving low vitamin levels

PurpleNel profile image
PurpleNel in reply to SlowDragon

Yes

Horsey07 profile image
Horsey07 in reply to PurpleNel

Is that because, like me, you were unaware of the need to do blood tests early morning, fasting? My TSH number increased by 1.5 when I did the test correctly. Is it possible for you to do another private test? Thyroid UK usually have a company running a special offer every ‘Thyroid Thursday’. They post on Twitter and Instagram about it. I would ask for the results to be added to my medical record, that made my GP sit up and take notice.

PurpleNel profile image
PurpleNel in reply to Horsey07

My GP wasn't even vaguely interested in my private results. And although I asked for them to be added to my records they now appear to be 'lost'. The Medichecks test was the only one that I did first thing in the morning before eating and drinking so probably no surprise that that one took me over range. I can't afford to do another private test at the moment as my last GP's total incompetence in even supplying a medical certificate so I could claim benefits has delayed my claim so I currently have no income.

humanbean profile image
humanbean in reply to PurpleNel

although I asked for them to be added to my records they now appear to be 'lost'.

If you go and log in to your Medichecks account you can find your results there and print them out again. Then send them to your GP surgery with a covering note saying (again) that you want them copied into your medical records.

PurpleNel profile image
PurpleNel in reply to humanbean

I have printed out another copy which I will be taking to my new GP surgery.

OudMood profile image
OudMood in reply to Horsey07

Which company is that? 😬

PurpleNel profile image
PurpleNel in reply to OudMood

I am probably being stupid but I don't understand the question!

Hi PurpleNel - I have nothing practical to offer in answer to your questions - though I'm sure others on this forum will. But just wanted to send you a virtual hug and wish you lots of luck x

Bless you and hug very gratefully received.

I can't help but feel that some kind of 'class action' lawsuit is well overdue when it comes to the discrimination experienced by many within the NHS, especially in relation to thyroid health. PurpleNel - I wonder if you will end up expending energy on this that would be better directed in managing stress and finding other ways to return to health/work? You must do what feels right for you of course - but I think that when our health is so compromised - finding the reserves to do battle is totally, totally draining. The system is not right, or fair. But in my experience, and from what I've learned from others in a similar position - you pursuing this will not change a thing - except to add to your stress and to keep you feeling ill and stuck. I hope that doesn't sound too depressing. It's not meant to be - just a suggestion that you might consider redirecting your energy back to supporting you in a positive way - ie researching and implementing as best you can a more holistic/functional approach to health. To work with the things you can change, and to let go of the things you probably can't. It's taken me a long time to take these messages on board - my apologies for the waffle! Hope it makes sense, hope it helps! x

I think they are very good points you are making rachelleigh and don't think it is a waffle.I know it almost certainly won't change anything although sometimes it does. 7 years ago I put in a complaint after nursing my Dad until he died, regarding morphine procedures in the Norfolk and Norwich Hospital. As a result the system was changed and I still feel so wonderful about that every time I think about it. Too late for my Dad but perhaps it has given other terminally ill patients relief and also their loved ones watching them. I take great comfort from that.

I spoke to a lovely person from PALS who said I have many grounds for a complaint and even said 'I am so sorry that we, the NHS, have let you down so badly'. !!!! 😱

I think not using energy when it is already so low is a very, very pertinent point. Two weeks ago I wouldn't have bothered for that very reason. But since admitting I can't work effectively enough anymore in my work as a creative writer to earn sufficient I found I have lost a huge part of my identity. I have too much time to sit and think. Putting together this letter has given me something to focus and work on - going at my own pace, lying down or sleeping when I need to. It is more for that reason I have done it than in any hope it will get me anywhere.

If it starts having a negative impact on me I WILL stop.

Thanks for taking the time to write your words of wisdom - all of it IS helpful.

Lovely reply PurpleNel - thank you! x

There are some very very special people on this forum. Not a day passes where I don't thank the powers that be for leading me here.

Yes - I too am so very grateful to have found this forum - the helpfulness and knowledge of the contributors is wonderful - and I am indebted to a great many on here for being where I am today... it has helped me enormously... x

Hi PurpleNel Sorry to hear your frustration which we all experience now and then. there are lots of good suggestions. You also can try PATIENTS ASSOCIATION. Good luck

PurpleNel profile image
PurpleNel in reply to Afaghieh

Is that the same as PALS?

Afaghieh profile image
Afaghieh in reply to PurpleNel

No they are not you find their No free phone on the web.

PurpleNel profile image
PurpleNel in reply to Afaghieh

Excellent - thank you.

I'm sorry to hear of your experience. Its very like my own at the moment. My blood tests kept coming back with high TSH and high T4, and they kept saying it was my fault for not taking the levothyroxine correctly. Yet I'd assiduously followed everything recommended on this site, taking the tablets clear of any drinks/food 3 hours aside. Ensuring taking my vitamins and minerals etc. So I paid for a private blood test for t3 and sure enough it was low. After going to an endo he agreed it was a t4 to t3 conversion issue and gave me a dose of t3 with t4 and I felt so much better. THEN my surgery, despite having those blood test results that were all then normal, decided it wasn't going to give me that t3 prescription. There's a difference between not knowing what a medical issue is - and knowing the issue but refusing to help. I'm watching your post with interest because I too want to put a complaint into my GP. I also saw in some post somewhere that there's a template letter for one's MP too? It seems too unfair that if a surgery won't provide you with the care you need - then when you are stressed about that - suddenly its your problem. I feel for you I really do. So - anybody out there know how to complain to their GP?s

What a nightmare for you 😔I wonder what would happen if every single one of us many thousands on here sent in a GP complaint at the same time?

Very good point about 'a difference between not knowing what a medical issue is - and knowing the issue but refusing to help'.

The best way to do it is to put your complaint in writing addressed to the practice manager. They have to investigate formally and respond in a timely manner.

You likely intend to do this, as you clearly write extremely well but best approach will be to lay out your relevant history & try and include dates and specific facts which may be relevant for them to investigate from your complaint. Putting all your thought & feeling on paper won’t be constructive in the long run as they will largely ignore it.

When you conclude be exact about what you want them to do.

I wouldn’t mention Hashimotos or even the term used in the UK “Autoimmune thyroiditis”. Just explain the nice guideline recognise TPOabs & that your private test show they are positive.

PALs act a liaison to buffer, diffuse to try and reduce complaints they don’t have any authority to progress your complaint. From what’s I’ve heard, never contacted them myself.

Best of luck, hope they take action to help you.

Thanks for all those points. I will incorporate all of that. PALS were kind and gave me some points although I understand that they can't do more than guide someone. They also suggest, much as you have, that I make my points in a bullet format asking for each of those to be addressed (it's a long list!) and then expand in the main text body or they will selectively ignore what they want.

And finally thanks for saying I write extremely well. That means a lot. Like so many others going through this, my self-esteem and self-belief have taken a pounding and I feel like I have totally lost my ability to write coherently or with cohesion as my thoughts are so muddled. When I read things back I wince. It is why I have had to stop working for now as I don't feel I am delivering what my clients are paying for and I work sooooooo slowly.

Thanks so much to everyone. I am halfway through my letter (plod plod). Can anyone suggest any official study links or pertinent facts/figures that I can refer to?

tattybogle profile image
tattybogle in reply to PurpleNel

hi again , to give references we need to know exactly which action , or inaction , by the GP your complaint is about. I totally understand why you want to complain.. the 'TSH based' guidelines for thyroid diagnosis and treatment leave many people suffering .... but i can't see what else your GP is allowed/supposed to 'do' at then moment .. even if NHS were allowed to officially accept private test results (which they're not) ,your TSH when repeated by NHS wasn't high enough to trigger any further GP actions at the moment (and fT4 was OK)

The presence of over range TPOab's don't alter this in regard to 'expected actions from the GP' .... They do indicate that you are 'more likely to end up with over range TSH and under range fT4 at some point in the future' .. but NHS can't treat with Levo until at least TSH is over range on 2 consecutive (NHS tests) usually 3 months apart. If they get one TSH that is in range, then they are not allowed to order a repeat thyroid blood test for a set period of time .. possibly 3 months, i forget . The presence of raised TPOab doesn't alter this time frame either.

All they are supposed to do if you have raised TPOab's is to monitor you at set periods in the future to keep an eye out for TSH / fT4 going out of range .. and your GP already did this when he saw the private test evidence of raised TPOab /raised TSH ,,,but unfortunately TSH came back well in range.. so his hands are a bit tied for the time being .

He's allowed to retest TSH after a set period .. that's all .

I don't know if it is usually possible to get private test results officially put on an NHS Record, but you would reasonably expect them to do their own TPOab to confirm the private test that had raised the suspicion. So if they haven't done that yet you could ask they do their own TPOab to get that on NHS record.

We might be able to see something that would help you complain better of you could post your previous NHS thyroid blood tests (the ones from before your private test)

I suspect that what the GP chooses to write on a sick note is up to his opinion alone. I doubt the patient has ever had any say in it. Whether it says ME or 'something else', doesn't reduce it's validity for the purposes of Universal Credit claim , and 'ME' on a sick note doesn't make it any easier than any other 'reason' to get through the system onto longer term disability benefits. So i totally understand why him putting ' low mood and anxiety' made you angry ..i'd feel the same .. but the GP isn't delaying your claim to sickness benefits , they gave you a sick note., and the new GP might not agree to write ME on it either, and from what i know about claiming disability benefits , it might not help you in any way even if he did.

Sorry to sound so negative .. but i want to make sure you understand what will and what won't help you . Your complaint won't do you any good if they can refute everything you say with 'our guidelines say blah blah and we have followed them'.

So a complaint needs to pinpoint what exactly they have done wrong according to NHS guidelines , what material effect that error has had on you, and what exactly you want them to do about it.

PurpleNel profile image
PurpleNel in reply to tattybogle

There is a lot in there which gives me food for thought Tattyboggle.Having made a start on the letter, a great deal of my complaint, I realise, is actually around the fact that I have been left getting more and more ill with the doctor accepting I am ill but not helping me find solutions (and initially for the horrible gaslighting that so many of us have been suffered.

Regards the medical certificate - I was asked what I wanted put on the cert. Why bother asking me if he was going to put something else? Also, if 'low mood and anxiety' are sufficient enough to make me so ill that I can't do my job then surely they should be discussing ways with me to help with that? Besides, low mood and anxiety don't give the symptoms I have or create the abnormal blood tests I have.

And it does make a difference what is on the medical certificate. Not for Universal Credit but for PIP for which there are various levels. I am unlikely to be considered as useless as I am at the moment physically for only low mood and anxiety. I only know this as I have a friend who works as a civil servant in this area and she is advising me.

I think in many ways I am just trying to keep myself writing something. I'm not expecting anything to change.

Well if you wanted to include an reference on Hashimotos it is referred to & listed along with other types on thyroiditis on the NHS website.

nhs.uk/conditions/thyroiditis/

The nice guidelines also has facts & figures

nice.org.uk/guidance/ng145/...

About 15% of the UK population have clinically detectable goitres

Hypothyroidism is found in about 2% of the UK population and in more than 5% of those over 60. Women are 5 to 10 times more likely to be affected than men

And Thyroid UK has full information on thyroid issues including the myths ect

thyroiduk.org/thyroid-antib...

thyroiduk.org/if-you-are-hy...

Say, for example, part of your complaint was they GP had refused to include your private blood test - I haven’t found a clear official reference specifying either way. The BMA have an ethics document regarding private services but the examples do not cover this scenario.

Only from discussion on this forum do we know some GPs/specialists do accept them and are pleased to save the cost to NHS other won’t look at them, as they are effectively taking responsibility for the accuracy of results, repeating them in their view is justified, even if unnecessary. Refusing to repeat the test, then you have a fair argument.

You may be better off first asking why haven’t they been included. They may come back with practice policy or protocol you can the. ask where In the guidance is this stipulated?

Many thanks for all of that. There is plenty for me to add in and refer to.

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