The GP has reduced my T3 by 10mcg and replace with 25mcg T4 (levothyroxine) !!!!!
(I'm stunned).
As the majority on this forum are aware I've had no problems with T3 but I think this GP must believe that a combination of T4/T3 is superior.
Guess What!!!!!: The GP has reduced my T3 by... - Thyroid UK
Guess What!!!!!
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SlowDragonAdministrator
If you are under the care of an NHS endocrinologist GP should not meddle with your dose
Never reduce dose T3 by more than 5mcg in one go
what were your most recent TSH, Ft4 and Ft3
Plus when were vitamin D, folate, ferritin and B12 last tested
How many years since you took any Levothyroxine?
Thanks for your advice and from tomorrow I will deal with the proposition - which I am not going to accept. It is all down to money.money.
I've learned more from Dr John Lowe (deceased) who knew far more than the majority of GPs/ Endocrinologists. I have been well for ages following his method.
I have been busy at home/visitors and not able to do what I wanted re the above.so, beginning tomorrow.
The 'Head' GP I have, I believe is so conceited and he is unaware that many of us now know more than we did before being diagnosed.
Tomorrow I will conta ct my Endcrinologist a.m. if possible.
Tomorrow a.m. I also will notify the proposal by the GP person that I have an 'Autoimmune Disease No.4.and he probably wont have a clue what it is.
Cross fingers/
Are you sure it was the GP and not the GP Pharmacist? Was there any consultation with you? Both questions need an answer and if you were not consulted you need to find out why this change took place and under whose authority.
It was the GP and it was during my husband's appointment who was advised what I should do.
Utter bunkum!! A message to the practice to say you absolutely refuse to change your dose without consultation with your Endo! They do this to me every time they do a stupid TSH test 'for their records' and every time I get my original dose reinstated... they just try it on every time 🙄
Do be sure to add in Patient Autonomy!!
Patient autonomy is a fundamental principle in medicine that recognizes the rights of patients to make decisions about their own healthcare. It emphasizes that individuals have the ultimate authority to determine what happens to their bodies and to participate in the decision-making process regarding their treatment options
I'd suggest this situation has more to do with breach of confidentiality than with Patient Autonomy (PA)which I posted about sometime ago.
I've seen PA referred to several times since on here with suggestions that we have the right to choose our treatment
To be clear, PA does not give us the right to demand treatment....like T3 for example
It means that healthcare professionals cannot impose treatments or interventions on patients without their informed consent.
However, endocrinologists have the final say regarding available treatment.....whether we like it or not! It's then our right to accept or refuse what is on offer....or argue the case!
We can refuse NHS treatment ( giving us autonomy).... as I have done re my thyroid medication, I now self medicate.
I posted about PA after my GP accepted my right to refuse T4 treatment....she quoted Patient Autonomy which gave me the right to decide what happened to my body.
Sorry this is bit long winded ....hope it's clear
Further, while we cannot demand a particular treatment, health professionals must take account of a patient's wishes when making treatment decisions.
shaws wishes were not taken into account and her treatment was discussed with someone else (possibly) breaching confidentiality...see my reply below
The GP had no right to act as he did!
Yes, this is the useful bit in this situation... health professionals must take account of a patient's wishes when making treatment decisions.
I wasn't sure if some people might have a medical POA which might mean this sort of sharing behaviour might be acceptable, I don't know enough about it 🤷♀️
Guidelines indicate that all medical decisions should be made jointly with the patient.
After consideration of the patient's wishes and the medical condition, the GP/consultant/ endo may not agree that the patient's wishes are sound/safe ...whatever the patient thinks/wishes!.
Agree absolutely with TiggerMe
Refuse to change dose and insist on referral back to your endocrinologist
How rude! For a start he/she broke data protection discussing your health with somebody else! I’d make a formal complaint and do what TiggerMe says.
He discussed *your * medication during your husbands consultation! That is really off, I don’t know what sort of relationship you have with your doctor but I would have thought doing that was totally wrong. What a cheek. Not to mention the old ‘five minutes and only one condition to be discussed at a time’
He sounds like he is a multitasker… crazy
I haven't been able to sort it out yet as I have had family members visiting us..
The doctor who decided is ignorant. Just because he has an attitude of thnking he is 'superior' to us who actually take replacement thyroid hormones.
I will contact the Endo's secretary and leave a message.
GP is arrogant and would not go 'out of the way' to relieve any clinical symptoms or trial an option.
Oh GPs. Felt awful from Good Friday. Called on Tuesday straight away it went to ‘Call centre full’ or some such, press button 1 for a call back which I did. No call back. I’ve since discovered ‘a lot of people don’t realise that you have to listen for a second message if you want a call back’. Tuesday, spoke to a human, gave symptoms, no call back. Wednesday spoke to another human. An hour ir so later I got a call from the receptionist to say the doctor wanted to know how long I’d had my symptoms, I said about a week. I then said I’d tried on Tuesday - that was when I found about about the call back system. She looked up Tuesday and could find no trace of me. Then there was Wednesday!
I cannot believe that a surgery could just completely ignore a patient. What on earth is going on. It is just bizarre. So good luck with your doctor. Don’t hold your breath.
My TSH is 0.001. Has been for years. “stable” said the Dr but let’s reduce it. Now have blot on my records! 🙄 Why muck about if it’s stable ! 😱
My endo threw that one at me too. I lowered my Levo and 2 weeks later hit the proverbial brick wall. Put it back up and told him I won’t be doing that again.
So sorry shaws .....the madness just gets worse!
Change of T3 dose should be with the agreement of an endocrinologist.
Did this GP consult with you before this change or just with your husband? He had no grounds for doing this... to all intents and purposes behind your back which breaches your right to confidentiality.
Ex GMC
Sharing information with those close to the patient. You must be considerate to those close to the patient and be sensitive and responsive in giving them information and support, while respecting the patient's right to confidentiality.
Complain to your Practice manager that this change was made by a GP without any discussion with you and disclosed to another without your consent
Even, if like me, if you don't object to a doctor sharing details with your husband, technically the GP still needs your clear consent to do so.
Is this GP in the habit of doing this I wonder!
I understand, like me, you are in Scotland so the following might help.
In a letter re T3 prescribing, this was the committment made by the then Minister of Health Joe Fitzpatrick in 2019
*********
I appreciate that the issue of T3 prescribing in NHS Scotland is a complex issue but would reiterate that the Scottish Government wants patients to access safe treatment options.
During the debate, I urged patients to discuss treatment options with their healthcare professional. Patient safety is paramount and I have asked individuals to write to me with their experiences.
I would therefore be grateful if you confirm in writing by Wednesday 27th February 2019 that your Health Board is committed to:
1. a holistic and safe review of patients prescribed T3 which is undertaken by a
healthcare professional based on the needs of the individual paitent.
2. clinicians initiating and continuing T3 where it is safe and clinically appropriate to do so, as agreed with a consultant who specialises in endocrinology.
We will continue to work together across the Government and health and social care
********
I wonder if the Practice/GP is trying to reduce/stop T3 prescriptions without regard to this statement and without agreement with your/ an endocrinologist
Don't accept this change shaws...the GP appears to be flouting this agreement.
However, untimately the decision lies with the endocrinologist!
What a shambles!
I no longer live in Scotland.
My sister and I used to talk and laugh every day - she was unable to walk due to her illness and died last year.
I miss her so much.
So sorry your sister is no longer with you to talk and laugh with. Hugs xx
So sorry for your loss shaws
Breach of confidentially still applies.
Thanks and I'm still learning!
There was a kindly old worthy, often having " taken of the drink", in the highland village where I grew up. He told anyone who seemed a bit down to " keep yer heartie up'....I've quoted Jimmy many times, over many years, and the memory still makes me smileSo....keep your heartie up shaws and I hope you smile too! xx
So sorry to hear about your sister 🥺
She was younger than me and I was shocked when she died.
We had never fallen out with each other. We always told one another if we had any upsets from other people and that remedied the situation. We also knew that it would be kept 'private' between both of us.
I would just ignore it and take what you want. It's your body so you decide what you put in it.
Thank you and your statements sounds so sensible
shawsAdministrator
I would never, ever be 'sarcastic'
I'm so shocked. You've been on T3 only for absolute years. I can't remember if you have issues with t4 or not but why on earth would they do this out of the blue when you are well and been settled for years. Makes no sense whatsoever, stand your ground and refuse.
Apart from the confidentiality angle, I think he is one of those who likes to flaunt his knowledge, but has no knowledge. Oh look, I know about T3 and T4 and I know what is best for you, bow down before me! He will never have your knowledge or understanding.
I hope he has a really nasty case of piles so when you tell him where to stick it....
Hug.
I asked a GP once if I could see an endo! She told me she knew everything there was to know about the thyroid!! Needless to say never saw her again 🙄
Why did you allow that to happen?
DippyDame in reply to
.....because we are up against the financial and political ( small p) clout of powerful, ill informed decision makers in high places.This forum is full of examples!
in reply to DippyDame
That doesn’t mean we have to accept their ill informed decisions. As others have said in this thread, you just ignore it and put what you want into your own body.
Thankfully shaws did just that.
DippyDame in reply to
...as I and many others here have had to do!
I have to source supraphysiological doses of T3 which is essential to keep me functioning...possibly even alive.
But that doesn't alter the fact that not everyone is in a position do this.
People need to know what the body needs, how to source it privately and how to correctly use it.
I absolutely agree we should not have to accept "their ill informed decisions", but not everyone has a choice
We have no idea how many people are suffering, and possibly dying quietly, behind closed doors as a consequence of these wrong diagnoses and treatments
Huge petitions for improved thyroid diagnosis and treatment have been put before both Holyrood and Westminster and ThyroidUK have an ongoing T3 campaign....current treatment is not being accepted.
Today we read, "Public satisfaction with the NHS has dropped again"
Patients need change....
I am currently on T3 only. 40mcg daily. I was hoping for an increase when I had my last endocrinologist appointment a few weeks ago, but because my TSH was 1.9 she said she was not allowed to give me an increase. I told her I am still very symptomatic of hypothyroidism, although was slowly improving with each small increase since 12 months ago. Cut a long story short, she agreed to test TSH, T4 and T3 and also minerals and vitamins. I went for blood test yesterday at the hospital. They only tested for TSH, T4 and T3. No vitamins or minerals. The nurse said it was probably cutting costs!!!!
How are we ever to get better?
They don't understand T3 do they?
....it's madness.
40mcg T3-only isn't a big dose....I need 125mcg to function!
Keep at them!
But I have to source it myself
She should know that T3 drops both FT4 and TSH and is not a reliable marker.
Symptoms are paramount but they don't get that.
Your symptoms indicate you need more hormone
The NHS is a business now and the bean crunchers are failing to manage the finances well in what is a very difficult situation.
BUT....correctly medicating thyroid patients isn't rocket science....they are failing patients......big time.
Maybe you need to source your T3 elsewhere....it's crazy but we need to take charge.
Thank you for your comments. The trouble is, you start to doubt your own logic when the 'Powers that be' keep insisting that you are optimally medicated and therefore cured!
And when challenged, they quote NICE and NHS trust guidelines, which they have to adhere to, but which fail the symptomatic patient, and as a lot of people on here can vouch for, is not accurate in treating each individual person with hypothyroidism and it's subsequent chronic health issues, being caused by incorrect medication in the first instance.
A TSH of 1.9 seems high if you're on T3 only. TSH drops significantly when on T3 only
Yes, TSH does usually drop when on T3-only.... but DandyButch has Hashi's and thyroid antibodies can cause false high TSH levels.
I think TSH is best ignored following initial hypothyoidism diagnosis!
On higher doses of T3-only we monitor the old fashioned way.....signs and symptoms.
Current thyroid diagnosis and treatment is a mess!!
in reply to DippyDame
…… you’re so right DD and it’s not only in the area of Thyroid disease.
I’ve recently been diagnosed with a bladder condition which requires permanent catheterisation. I’ve been struggling with lengthy, kinked tubes which mean that my bladder will not empty properly into the catheter bag.
I’ve just been told, rather reluctantly, by hospital Urology Dept that they the hospital trust longer use female catheters as there’s “too much waste”. Further questioning revealed that very few women have permanent catheterisation compared to men (I was given the stats but I can’t remember, and frankly I couldn’t care) so they buy male catheters for use by men and women.
The female catheters are 20 cm long, the male catheters 40 cm. Little wonder that they don’t function properly.
So I’m now resourcing silicone catheters for women. I’ll add the cost of those to the NDT I self source and the Micropore which they’ll no longer supply on prescription
This appalling situation is not confined to thyroid issues
I was a new member and was completely ignorant about anything to do with the thyroid gland - just as many doctors I consulted were also ignorant. You can click on my name to read about my journey to be diagnosed.
I send my understanding, in some way, in how losing a close family member is so sad and leaves a void.I do not have a sister. My older brother is so distant, emotionally and physically he may as well live on the moon.
However, my mother and I had an extremely close relationship, primarily due to the premature death of my father aged 54. My mum was 52 at the time, and she died aged 84, about 4 years ago.
We helped each other, and became best buddies. My mother became a different, less Victorian, more broad-minded person.
I know this wouldn't have happened had my father not passed away so young.
As I hear so many say, you learn to live without them. You never completely heal, and they will always remain in your heart, and memories.
Because we loved them, and they loved us.
Xxxxxxxxx
Please read reply from me about your loss. I made a mistake and didn't post directly to you.
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