ANGER WITH NHS OVER THYROXINE DOSE: How can I... - Thyroid UK

Thyroid UK

117,066 members135,830 posts

ANGER WITH NHS OVER THYROXINE DOSE

fiftyone
fiftyone

How can I deal with my anger in the aftermath of 6-months doctor-induced illness, starting in March this year? After an episode of atrial fibrillation, both the hospital and my GP said I have to reduce my thyroxine dose, from 175mcg to 100 mcg. I told my GP this would make me very ill. He ignored me. Soon afterwards I realised that the episode was most likely due to a prescription for pseudoephedrine, mid March. As I became worse, I decided to put my dose up again (I have a small supply of extra pills). After going back up to 175mcg, I began to feel better. My GP was very annoyed with me and refused to listen to my side of the story. I walked out on him and consulted another GP, who told me to reduce my dose to 150 mcg. I followed his advice for six weeks, feeling very poorly. My blood tests showed that my T3 was well within range but my T4 was still well outside the normal range, as usual. It took evidence gained form this site to convince him I would be okay on 175mcg. Within a few days of upping my dose, I felt considerably better - my pusatile tinnitus disappeared, I regained energy and enthusiasm, my sleep pattern normalised and my acid stomach improved. I am very angry with the hospital and GPs for forcing me into 6months of illness because they fail to check my records carefully enough and/or don't listen to my first hand experiences.

What is the best way of dealing with my immense anger? It is staggering to think that ther medical profession can impose illness on me like this. I feel terrified consulting a GP now for anything. I don't trust their judgement any more

41 Replies

Similar happened to me some years ago, I was forced to reduce dose and became very unwell, you just have to forget about it and move on.

I agree with bantam12. I was increased from 100 to 175 by my GP and had 6 months off work to deal with the fallout. I felt very angry towards my GP but used the time to research and experiment with supplements, lifestyle change and exercise. 12 months later I’ve changed jobs, lost 2 stone and am in a much healthier place but I’m armed with knowledge now and am not afraid to question my GP.

Molly

If you would be willing to share a bit of the details of the "fallout" you experienced as a result of the dramatic increase in your dose, I would be grateful.

Also, what you did to achieve health.

In a nutshell: panic attacks, weeping, helpless, aches, joint pain like I’ve run a marathon, sore hips, eyebrow loss and many more... I followed advice from this site re supplements, had counselling, walked the dog, aquafit, Pilates and watched lots of box sets. 🤣

So are you currently taking any thyroid hormone replacement?

This also happened to me. 9 months on I am still recovering 😔

roxanaleah
roxanaleah in reply to AnnaSo

Anna,

Please elaborate, if you can/will, regarding your experience of being overmedicated and what you did to recover.

AnnaSo
AnnaSo in reply to roxanaleah

Hi Roxanaleah,

All the stories are available via my posts if you check my profile. In a nutshell my dose of Levo was reduced from 150 to 125 and I fell very very ill. I am recovering on NDT.

roxanaleah
roxanaleah in reply to AnnaSo

I'm sorry. I misunderstood your comment to mean you suffered after a dose INCREASE as was described by Mollymalone79.

AnnaSo
AnnaSo in reply to roxanaleah

My post was in response to the author not Molly. No worries.

GPs these days are hide bound by “guidelines”. In recent years, those guidelines have made it more and more difficult for them to use their own judgement. In addition, they’re taught in medical school that treating thyroid conditions is easy—just get the TFTs into range, job done. When we know that’s simply “job started”.

Honestly, there’s nothing you can do except channel your inner Elsa (it’s a Frozen reference) and “Let it go”. I know it’s totally anger-inducing, but imagine being a doctor in today’s climate. Forever in fear of being struck off the GMC register for making a mistake or failing to follow those guidelines.

What we can do is support Thyroid UK, this forum’s parent charity, to continue advocating for thyroid patients’ care and lobbying those who write the guidelines to take account of the most recent research and advances in medicine.

thyroiduk.org/tuk/donate.html

Espeegee
Espeegee in reply to Jazzw

Whilst I agree with you in part, there are a growing number of GPs who are thinking outside of the NHS guidelines box but there aren't enough of them. I think the biggest impact we as patients can have is to arm ourselves with knowledge so that we can either challenge or educate our GP, the more they understand hopefully the more they will enquire for themselves and even share with colleagues. Seeing their patients recover should also act as a stimulus.

If you're angry, channel it! Write to your GP, explain what happened, point him/her in this direction, nicely of course 😉If you're feeling really cheeky, buy one of the recommended books and send a copy.

fiftyone
fiftyone in reply to Espeegee

The reaction of Gps when I present 'knowledge' is to say they will refer me to a local endocrinologist whom, I know, thinks everyone's TSH should be '1' (I asked her about optimum TSH when I came across her, unofficially, in hospital). I refuse to see someone who has such entrenched views. No better than the GP. Maybe a book for the endo as well??

Espeegee
Espeegee in reply to fiftyone

You don't have to see a local one despite what your GP might say. Look up the rules about where you can be referred and then find one who specialises in Thyroid and asked to be referred. If they argue take it to your Local Area Health Authority for clarification.

fiftyone
fiftyone in reply to Espeegee

thanks. Useful information

Jazzw
Jazzw in reply to Espeegee

A growing number, eh? Not going by what I read on this forum every day of every week of every month. If anything, in the five plus years I’ve been posting here (I’ve gone by more than one user name), things are getting increasingly worse—though yes, there are a few (precious precious few) who are willing to listen. Even so, they tend to insist you source your own meds and won’t prescribe on the NHS (there seems to be a growing trend for that too.)

An unintended consequence of litigation culture.

SeasideSusie
SeasideSusieAdministrator

fiftyone

Nearly 20 years ago an endo reduced my dose because my TSH was suppressed. He didn't care about my symptoms, only about the TSH. It didn't take much of a reduction, in fact only 25mcg at the time, but over a period of 4 months he'd managed to achieve his beloved "in range" TSH but didn't give a flying fig about where FT4 and FT3 were

Month 1: Supressed(0.27-4.20) ~ Month 4: 0.4(0.27-4.20)

and in doing so he did this to my FT4

Month 1: 23.7(11.8-24.6) ~ Month 4: 15.6(11.8-24.6)

and this to my FT3

Month 1: 5.2(2.8-7.1) ~ Month 4: 2.8(2.8-7.1)

What happened to me? I was so ill that I had to give up working in my own restaurant and my husband had to look after me for 2 years whilst carrying on with the business. All I could do was crawl out of bed just before he opened the restaurant at midday, he had to make my food and drinks, I couldn't do anything. I binned the endo, with the backing of my GP who did increase my Levo back up but much damage had been done and I'm probably still suffering the effects of it today.

What did I do - nothing (apart from being angry at the time like you), there's nothing you can do, it's happened, you can't change it. Stay angry and it will eat you up. Just vow to do everything possible to help yourself from now on. I have a very healthy disrespect for doctors - all those at my surgery are rubbish anyway, the only one any good is the Advanced Nurse Practioner and I can discuss things with him whereas the doctors don't allow discussion, what they say is law as far as they're concerned.

The GP who has agreed to supply me with my normal dose, talks about the autonomy of the patient which must be respected. Hopefully, as time passes, and assuming I remain in good health, I hope he will pass on the fact that everyone is an individual. When I look back, I see that some years ago, the upper limit for T4 was 26. Now it is 14.5. Why on earth don't my body cells understand there's been a big change!!

SeasideSusie
SeasideSusieAdministrator in reply to fiftyone

fiftyone

Don't get hung up on the range. Your result will have been worked out on the new range, so whatever the number would have been in the old range, it will be a different number within the new range, it's the percentage through the range you look at if you want to compare.

In my post I put the then range for FT4 as 11.8-24.6 and that has now changed to 7-17 which is actually better because the width of the range is now only 10, whereas before it was 12.8

not really sure I understand that. As the T4 range reduces, my T4 is further away from the top measure than before. Eg. My T4 was 22, when the top of range was 18.8. It was still 22 when the range went down to 14.7???

SeasideSusie
SeasideSusieAdministrator in reply to fiftyone

fiftyone

My T4 was 22, when the top of range was 18.8. It was still 22 when the range went down to 14.7???

So your FT4 was over range both times. Had you taken your dose of Levo before the blood test?

no.

SeasideSusie
SeasideSusieAdministrator in reply to fiftyone

So that would suggest overmedication if FT4 is over range.

that's what the GP keeps thinking, then he lowers my thyroxine dose, then I feel ill. When he lowered the dose, not only did I feel ill,but my T4 only reduced to 19. I am now back on the higher dose, feeling better. He's scheduled another blood test for six months.

SeasideSusie
SeasideSusieAdministrator in reply to fiftyone

Does he test FT3? Is it in balance with FT4? Or high FT4 and low FT3?

Good T3 level, 5.7 (top 6.8). But feel better now on my long-term dose of 175mcg. Even at a lower dose, my T4 only went down to 19 (top of range 14.7) and I felt awful.

AnnaSo
AnnaSo in reply to SeasideSusie

Hi SeasideSusie,

I can really relate to your story as I am also a victim of carefree dose reduction. Can I ask how long you stayed on the reduced dose?

SeasideSusie
SeasideSusieAdministrator in reply to AnnaSo

Anna

Endo reduced dose in September and I stayed on that until December, GP increased by 12.5mcg, was on that dose until the next March, then 125mcg until the October. I eventually ended up on 200mcg for 4 years. All that time I was never really well, GP tried her best, allowed over range FT4, but FT3 only tested once in all that time - 11 years. 2 years later I found this forum, realised there was a lot more to it than just those test - vitamins, adrenals, etc. Never trusted a doctor since and will never in a million years see an endo again.

AnnaSo
AnnaSo in reply to SeasideSusie

I’m sore to hear about your experience Susie. I like how you’ve moved on from any negativity. I have to say I still have a lot of resentment in me for the endo who made that decision. I feel as if I had over half a year of my life stolen from me 😞

Welcome to our world

Your anger is normal but try to let it go as you can’t do anything about it.

I get atrial fibrillation (AF) but am afraid to report it. I’m optimally treated and get less AF the more stable my dose is. So like you, I want to avoid any unnecessary reduction in dose. But I do worry about the risks I’m taking with untreated AF. What shockingly poor healthcare us thyroid patients get.

Hi Aurealis

When you say you get AF do you mean it comes and goes? If so, how long, typically, do they last?

I get it too. It's an awful condition. My heart goes crazy and very clamorous and can last from a few hours to around 36 hours. I read of people who have AF and don't even know it. I have no idea how that could happen as my heart is literally banging it's way out of my chest like a box of angry frogs.

It started out of the blue for me. Long before I even suspected my thyroid. But I suspect my thyroid and adrenals have been winding down for a long time and now my sex hormones have also left the party. I had a session of AF recently. It coincided with a day where I felt awful all day long, which I put down to my sex hormone levels dropping suddenly. For me I think AF is pretty much hormone driven. I saw a heart surgeon when I first started to have it. He said my heart was fine then. He also said they didn't know what caused it. That's because none of the specialists seem to talk to each other! We need House in our real hospitals. If the heart specialist talked to the hormone specialist perhaps they would find commonalities and the result would be actual treatment that worked for people!

I am worried about the AF now I am on Levo. I don't report my episodes, but then back at the start my GP told me not to as everything was OK, unless it got worse or I wanted Beta Blockers or anything like that. I write them all down in a notebook for my own records. They have been getting longer gaps between them until recently when I had 2 sessions within 3 weeks. I have just had a 7 week blood test and feel sure I am ready for a dose increase, so I'm hoping it was low hormones that brought on those two sessions.

Re-direct your anger-energy into getting better....prove the doctor wrong by following advice offered here, and improving.

Holding on to anger is destructive, let it go and move on.

Hi fiftyone. How insulting your treatment has been, no wonder you are angry, with that as well as being made ill needlessly. I think it's important to do something with that anger. Here's my suggestion. Write a letter to your GP, that you are NOT going to send, and express all your anger in your letter ... using as many insults and swear-words as you like. When you've done that, do it again, and again, as many times as you like, until you've said all you want to say.

Then write a useful letter, once you are calm and have done the above, make it very factual and explain what you feel about those factual events and why.

No-one can argue with what you feel and facts are facts. We deserve better, a GPs responsibility is to look after our overall health, not just physical but mental and emotional as well, that's worth remembering.

Hope that helps

fiftyone
fiftyone in reply to thyr01d

thank you for your help.

If you start getting angry with GPs they'll just note on your records that you have mental health problems of some kind. I don't know what the diagnosis would be.

They probably wouldn't tell you about the diagnosis though. But once it is there they will use it as a way of reducing your actual physical medical care because, of course, your problems are all caused by your "mental health" problems.

You'll find that everything you have wrong with you from the time that diagnosis appears will be treated with anti-depressants and anti-anxiolytics.

It's impossible to get psychiatric diagnoses off your medical records.

There is a recent series of blog posts on the subject of changing medical records. It isn't always clear whether the blog was written from the point of view of someone in the US or someone in the UK. But the comments often mention the NHS and are worth reading.

rxisk.org/changing-your-rec...

rxisk.org/a-unicorn-changin...

The second link above is part one of a series of four blog posts written by someone who suffered hugely from being misdiagnosed as being severely mentally ill, but managed to get a misdiagnosis removed from her records after years of effort (in the US). I wouldn't be able to do what she did, and I doubt it would work in the UK anyway. But it is still interesting.

fiftyone
fiftyone in reply to humanbean

No. I am not rude to GP's. I respect their position. I do, however, ensure that my own views are written down and put on my records. I walked out on my normal GP who raised his voice to me (worried I would get really mad with him), and I recently wrote a letter to thank a GP for putting me back on my normal thyroxine dose. However, interestingly, I saw the consultation notes with the angry GP and he said at the end of the consultation I seemed very shaky and he put this down to 'being overdosed on thyroxine,' not because his attitude was so appalling. Bastard!

mademary
mademary in reply to fiftyone

How I sympathise! I have moved house twice in the last four years and therefore also surgeries. Recently qualified doctors especially seem more inclined to follow the TSH line and wanted to reduce my dosage of levothyroxine and you have to learn to stand up to them. My solution was to find the longest qualified GP in the practice who understood the idiocy of concentrating on TSH and put me back to my previous level. I recently had a 'cardiac event' (false alarm thankfully) which resulted in several blood pressure tests being done in A&E over the course of a few hours during which my blood pressure rocketed to 213/95, but the nurse also commented that my heart rate was low at 58. After a bit of research on the internet (whatever did we do without it?), it appears that a low heart rate can be connected with hypothyroidism. When I raised this with my GP, he didn't want to know and we ended up almost coming to blows over the telephone. Needless to say, I will be seeing one of the other GPs in the practice from now on. My frustration with the NHS's attitude grows daily and I am very grateful for this forum.

fiftyone
fiftyone in reply to mademary

I empathise with you. When I was on 175mcg I took my heart rate twice a day for a couple of weeks before seeing my GP. The rates were good, 50s,60s and early 70s but when I saw the GP and I tried to show him my heart rates he just didn't want to know. When I asked him about my T3 level, he said it wasn't relevant. That's when I walked out.

Hi Humanbean

I found out that my doc had put dementia on my son's records. This was a few yers ago. We were never told. (I ws never told I had Hashimotos until another doc told me but said treatment would be the same!). He is now 24 and has Hashimotos Thyroiditis like me. He is also special needs (global delay). After several emails and the doc telling me he couldnt get it off the system he finally climbed down. I used to work at a GP surgery so I knew he could get it taken off. Mind you I think I should get a copy of his records just to check or will ask my new doc to check.

I had to get a second opinion regarding his Hashimotos Thyroiditis as my local clinical lead endocrinologist blamed it on him not having a job and his special needs and took him off the trial of levothyrxoxine even though he was in normal range whilst on it! She wouldnt listen to me. Thank God the second endo did in Weston Super Mare. He diagnosed in five minutes and asked if I had greed to him being taken off the levo. I told him I hd no choice as the doc had to go by her written letter. He is now back on it but putting on weight so might have to try something else eventually. Im on NDT and lost weight. Turns out it was all the mucin (fluid) caused by taking levo for so long. I also discovered I have one kidney a few years ago which I feel might have been affected by levo but no proof of course.

Ive recently sent some info from STTM re needing T3 and T4 as I too get palpitations and one short lived AF attack on recent 7 day tape). I understand lack of T3 can cause this so thinking of asdding some. Ive also sent her the recent change of heart on Guidelines by Dr Toft. She did say she would red it, so fingers crossed!

I dont trust any of them anymore.

JaneCx

I do not trust Dr anymore due to wrong diagnosis And they will not listen. They just "practice" medicine. Trial and error. Mainly error. Listen to your gut n pray for wisdom n discernment. Blessings and healing.

You may also like...