Your advice please......: After putting in a... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

Your advice please......

Mags_23 profile image
28 Replies

After putting in a complaint about my Mum's GP to the Medical Ombudsman, when she stopped her Thyroxine for 6 weeks and my Mum ended up in a Myxedema Coma & on a ventilator for 6 weeks. This was part of the response, which really leaves me speachless!!

"The Advisor said that, in this case, rather than the seizure being a side effect of the medication withdrawal itself, your Mum had rapidly developed Hypothyroidism following the stopping of the medication. While it was to be expected that your Mum's Thyroxine levels would drop without the medication, the Adviser has said your Mum's rapid development of Hypothyroidism was rare. They advised noted that the seizure was, therefore, a complication of your Mum's underlying condition (Hyperthyroidism) rather than a side effect of the withdrawal of the medication itself"

Written by
Mags_23 profile image
Mags_23
To view profiles and participate in discussions please or .
Read more about...
28 Replies
greygoose profile image
greygoose

Absolutely disgusting! A load of totally illogical gibberish. And we still come back to the fact that her medication should not have been stopped! End of.

T3MARY profile image
T3MARY

Disgusting they took the meds away thats what's caused your mother Myxedema Coma Treating Thyroid patience like idiots as though we haven't got a brain cell between us I hope your mother makes a full recovery just sorry she had to go through this change GP x

Mags_23 profile image
Mags_23

Therefore they haven't upheld my complaint. It's taken them over a year to come to this conclusion!

MissFG profile image
MissFG in reply to Mags_23

Have you taken legal advice to represent you rather than going direct? If I had such a complaint I'd definitely seek legal representation

Mags_23 profile image
Mags_23 in reply to MissFG

I've not yet, I was waiting to see what the Ombudsman said. I'm unsure if I can take legal action now that the ombudsman has looked into it & said that the "GP acted within reason"!

helvella profile image
helvellaAdministratorThyroid UK

That argument is akin to angels on a pinhead. The false distinction between "withdrawal" and "stopping" is a nonsense. I assume she stopped because it was withdrawn!

It also doesn't matter a damn how rare it is. It happened. It can happen. It is necessary to ensure that it doesn't happen - by whatever means are appropriate.

Hypothyroidism is a complication of hyperthyroidism? Sounds to me like iatrogenic hypothyroidism due to incompetence and lack of care.

Mags_23 profile image
Mags_23 in reply to helvella

My Mum was told to stop her Thyroxine for 6 weeks, as her levels where too high. That's my point exactly. Just because it's a rare side effect, it can still happen & it did! If it's listed as a known side effect, then it has the potential to happen!!

Me2U profile image
Me2U

Terrible! I may be missing something here but why did GP stop the throxine in first place? Was it to do with her blood level results?

Mags_23 profile image
Mags_23 in reply to Me2U

Yeah, my Mum had her annual review and her levels came back too high & the GP advised to stop her Thyroxine for 6 weeks, then have her levels checked again.

Me2U profile image
Me2U in reply to Mags_23

Thanks for clarification. 6 weeks was obviously now way too long. As a newbie on this site I am not sure what GP's do/advise in such a case...but nevertheless the result was catastrophic ... am glad yoyr mum pulled through!

Mags_23 profile image
Mags_23 in reply to Me2U

Yeah, don't get me wrong, I'm totally aware that what happened to my Mum was indeed very rare & I except that. My complaint was the sheer negligence of the GP. She spoke to my Mum over the phone, she never asked how my Mum was feeling, if she had any symptoms of being over medicated or warned her of any side effects to look out for when she had stopped the Thyroxine. Or asked her to attend the surgery to be assessed at any point. We went through an awful time when my Mum was ill because of her actions, we where told 4 times, by 3 different docs that my Mum wasn't going to survive this.

Heloise profile image
Heloise in reply to Mags_23

Rare? Why would it be rare for a chemical with a half life of two weeks be totally depleted in six weeks?? I wish you had posted this arrangement when it was first discussed. I'm sure many of us would have been horrified. Another reason never to put your entire treatment in the hands of this so called profession.

Mags_23 profile image
Mags_23 in reply to Heloise

I wish I'd known this site existed back then! But to be honest, my Mum was very lucky indeed as far as her thyroid goes, as the only symptoms my mum had where intolerance of the cold & the odd tired day & that was it. Now? Now it's a totally different kettle of fish!! 😈

Heloise profile image
Heloise in reply to Mags_23

Didn't mean to scold you, Mags. What the profession does not seem to note is that low thyroid negatively impacts your heart. This may not be noticeable until you are in heart failure. What a terrible risk they put your mother in and I hope but I fear that they still will not keep her levels high enough necessary for that.

Let us know if you can. Especially in older people they tend to worry more about over burdening the heart and end up making the heart struggle.

Nanaedake profile image
Nanaedake

II'm so sorry your mum (and you) had to go through all this. It was a terrible experience. I'm really glad your mum pulled through. For me, it raises the fact that thyroid conditions are complicated and are not straightforward. Lots of body systems are affected and hormonal imbalance is not to be triffled with. Nowadays GP's don't appear to have the time or resources to monitor patients properly in the way they need. Considering 1 in 20 people has a thyroid condition, each surgery needs a specialist who holds a regular clinic that actually follows up patients closely when changes are made to their medication and when they don't feel well. Visits to endos are no more frequent so I don't think the referral to an endo system works very well either. For other conditions, surgeries often have a specialist nurse as for diabetes or asthma and I don't see why surgeries can't have a specialist for thyroid conditions to prevent this kind of thing from happening.

Vvap profile image
Vvap in reply to Nanaedake

The answer is always money!

Mags_23 profile image
Mags_23

That's a really good idea Nanaedake !! A specialist nurse would hopefully be more up-to-date with treatments & be more understanding to sympto.s.

Phyloreardon profile image
Phyloreardon

Just a thought, do you have copies of your Mum's blood tests when the medication was stopped? With ranges of course. Would be interesting to post on here so others can have a look. See how 'overmedicated' she was

Mags_23 profile image
Mags_23 in reply to Phyloreardon

Yeah, I do, but there's no ranges. Her FT4 was 27.1 & her TSH was 0.01

liz1952 profile image
liz1952

Old Boys network......hard to get around them, they stick like glue.

Mags_23 profile image
Mags_23 in reply to liz1952

So very true, unfortunately 😟

silverfox7 profile image
silverfox7

I would see Citizens advice and ask them what you should do. There is possibly a medical negligence expert in your area and hopefully you can have a 30 mins free consultation and also ask about no win no fee situation. We can all see that this reply you got was a load of clap trap so I would hope that the law would too but they will get advice and that could be a problem as to how expert the expert actually is. I do feel for you and the other people who could get treated the same but I'm also mindful these things don't always get the wanted result as even a lawyer can't win against an 'expert' witness! A friend of mine went down to theatre with a red alert bracelet of telling of an allergy. He was still given this drug and had a really bad reaction but the expert witness convinced the Court that it wasn't down to that!

Mags_23 profile image
Mags_23 in reply to silverfox7

That is shocking!!!! If only they would just hold their hands up & say they where sorry, we made a mistake & we've learned from it. That's all I ever wanted.

serenfach profile image
serenfach

So sorry to hear this. The Ombudsman will get medical experts to look at the facts, and although it wont change anything, he may just give them a slight slap on the wrist.

I had a scan which showed tumours on my kidney. A letter was sent to me and my GP saying the scan was clear. This was explained away as "they did not want to upset me or my GP". I went on weeks later to have the op to remove the kidney and ended up on life support. The whole complaint report was a tissue of lies and ended up that the whole thing was my fault.

The ombudsman told the hospital to look at the systems and apologise to me. The hospital did neither.

I hope your mother is feeling better. Behind the scenes your GP will have been shaking in her boots as she probably has realised how badly she messed up, but you will never know this, but I hope that is some comfort to you.

Mags_23 profile image
Mags_23 in reply to serenfach

Sorry to hear about your situation, it's tough when they mess up like that, isn't it? They just don't realise the knock on effect is has on the patient & their family. I was diagnosed with PTSD Andreas off my work for 3 months. The amount the GP has cost the NHS with her error is shocking, as to think how much it would cost to keep my mum in an ITU bed for 6 weeks. That along should get her into serious trouble!!

Mitch27 profile image
Mitch27

I hope your mom is ok now but you should get on contact with the newspapers or BBC etc...beyond ridiculous

silverfox7 profile image
silverfox7

Well they do say doctors bury their mistakes and I can be funny as a comedy gag but real life it certainly isn't. So glad it was a happy ending but at least an acknowledgement should have been forthcoming and an apology

HI Mags - it's catch twenty two - I can well imagine your worry that your mum nearly died

because of serious misdiagnosis. There are patients complaints which go through nhs

panels - you can find a booklet on making a complaint against your practise. The only thing

you can do is maybe change your practice,- you have three years to bring a complaint to

the quality of care commission - but whilst you are at the same practice your lives could

be made hell with blocking and other tactics to warn you off.

I know all you want is for your mum to be treated with due care and attention for her known

condition, and for expert aftercare to ensure this does not happen again.

Make sure you don't go to the same doctor again, but find another GP - always attend appointments with your mum to explain her difficulties. The difficulties come with referrals

to specialists - and it is pot luck who you get - usually a less experienced specialist.

This website has links to thyroid specialists and administrators who can look at blood test results

to explain what is the missing link. Ask your practise manager for a print out of the most recent

test results and find out what tests have been done as sometimes the nhs cut out tests, and

autoimmune response tests. Checks should be made every 6 months at least with such a serious

thyroid condition and under the data protection act you are entitled to have a print out of the test results, after you have seen a GP. So if you ask for another doctor to interpret the most recent test results, you can make an appointment through the receptionist for the medical appointment

asking her or the practice manager for the print out for you to send to this site. They will help you

by knowing the range of hormones which are normal and may indicate you have another thyroid

disorder such as Hashimotos. Best of luck -

You may also like...

Your Advice on Results Please

Many thanks for your replies to my previous post. I have just received my blood test results from...

I need your advice please help what should I do!!!!

everyone I need your help, I was on Levothyroxine before 50mcg (it wasn’t final dose ) I stopped it...

Please need your advice !!!!!HELP!!!!

me any thyroid med and treating other issues rather than thyroid.My thyroid is TSH 18.07 and FT4...

I'd welcome your advice please

Has anyone ever tried a therapeutic dose of Thyroxine and it has made a difference? My...

In desperate need of your wise advice! Please help

by a GP from my surgery (not my usual doctor) who said my results were fine. The results in...