Stop Thyroid Medication request after NHS COMPLAINT!

Hi all,

I finally received a response from the NHS yesterday after three and a half months. My T4/T3 combination in 8 months has made a huge difference to my health including severe breathlessness with chest pain.My kidney function had doubled (EGFR 88 now) and creatine levels halved. Amazing!! Cholesterol and BP normal. The Response to my complaint suggests that I STOP my Thyroid treatment and see the NHS in 3 months for a new blood test. The Response states that "high Cholesterol" and "high blood pressure" are NOT symptoms of hypothyroidism". "Atrial-fibrillation" , "osteoporosis" and "Cardiovascular mortality" may be caused by over-treatment .Two Nephrologists have diagnosed Hypothyroidism, one Endo is in charge. Shocking! I will continue to self-treat.

Big hugs xx

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44 Replies

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  • Have you got your medical records yet?

  • Hi blue bug

    Yes I have had my records for months x

  • Then if you have your records you know they are talking cr*p.

    It seems like they are punishing you for complaining.

    Oh and "maybe" also means "may not be".

    And it's true - "high Cholesterol" and "high blood pressure" are NOT symptoms of hypothyroidism" - as they are signs of it as they can be measured.

    I guess the response went to a lawyer or other legal expert for editing before they posted it to you.

  • Hi Bluebug

    The whole situation is farcical!! But I'm improving every day so I will continue to treat myself. Shame on the NHS!!! Xx

  • Nothing they do surprises me.

    Just don't get old or get a chronic disease....

  • Bluebug

    Hahahaha !! Don't get old or a chronic disease!!๐Ÿ˜‚๐Ÿ˜‚ I'm 52 but I felt 150 before Thyroid treatment!! Thank goodness I'm getting better every day. Tcare xxxx

  • Primary Hypothyroidism IS a chronic disease.

  • Hi Panda think the post about "don't get a chronic disease was a joke!! " Hope you are well . X

  • The way things are with thyroid issues I can never tell if anything is meant to be a joke or not.

    Am OK for thyroid issues at the moment but have been suffering with housemaid's knee for the last 3 weeks. Unable to finish my new kitchen and not able to help out at local park finishing painting some rather large and intricate wrought iron gates. 2017 is not a good year as was also unfit for 2 months with back problems after falling off a ladder and my brother died in March.

  • Hi Panda321

    Glad you are okay with your thyroid health just now. Very sorry to hear about your brother and other issues because of your back. Hope it gets better soon. Tcare xxx

  • Sorry some of my posts on this thread are sarcastic.

    Every time you think you are over reacting when you think someone in the NHS is cr*p they do something to reaffirm they are.

    ( Sorry just read a comment below about doctors saying something was asthma - $%^&%^%***!!)

  • Hi Bluebug

    It's good to get a laugh sometimes .. xx

  • Hi Bluebug

    Here is an excerpt from the NHS response letter:

    "There are risks related to unecessary Levothyroxine treatment as this can suppress natural thyroxine hormone production and cause iatrogenic damage due to over-replacement long-term. This is associated with increased risks of osteoporosis, atrial fibrillation and cardiovascular mortality. I understand Dr @@@ explained this to both you and your GP".

    Not. Single reference to the BENEFITS that Levothyroxine or other thyroid medication could bring me. It's all a lie x

  • Translated to - "We need to cover our backs as your treatment is not the same as the current guidelines and we don't want to be struck off for not following them."

  • Hi Bluebug

    Yes!!! Also translated to .. kidney specialists have no right to prescribe Levothyroxine to their kidney patients. They know nothing about the Thyroid!!!! They have no right to protect the kidneys of their patients as they have no endocrine knowledge! Ludicrous. X

  • renal doctors are usually very good generalist doctors and tend to have a better working knowledge across the board than other docs.ive complained about the NHS with my partners care.the response from the ombudsman was pathetic.ive also sued the NHS,successfully. I have also previously worked in the nhs.it is like rattling a cage to get good medical care for chronic illness.but folk know their own bodies best and you have to keep seeking an answer.

  • Hi melville999

    Thanks for your reply. That's brilliant that you sued the NHS. If I could afford it I would also! Yes every Renal expert I've come in contact with has been outstanding!! But it's the Endocrinologists who are dictating my kidney preservation and that's the issue!! Tcare xx

  • hello,I did reply but it didn't get posted.best of luck

  • Hi melville999

    Do you think an Endo has more clout than a Nephroligist?

  • I think they are all considered equal by the management but think sometimes you have to manipulate the system to get to where the best doctor is

  • Hi Melville

    Thank you!! I will continueto attend the Renal Clinic and self-treat!! ๐Ÿ˜€

  • Im on euthyrox t4 ans t3 at night i feel like my ears wil pop after i take the t4 ita 5omcg.

    And if i take the whole t3. Then i go into hyper so i take a quarter.

    I can't exercise no energy.and suffer brain buzz.

    Ive tried to half the t4 but go into hypo by lunch time.

    When i wake up ussualy after a restles night cant get to sleep.

    I feel beter then when u take the t4. Ive been in for 25 years.

    Im in south Africa without med aid and hospitals here are a disaster.

    I feel i have adrenal failure as well as my kidneys seem to work over time. And i have bad sweat odor really bothers me. I was fine up until November last year. And had a bad flue since then im in hell

  • Who are these do-it-yourself professionals? It is so ridiculous that it is laughable if not so SERIOUS that they are gong to kill people through misguided/uneducated statements.

    Dr Skinner would be shocked by these incompetent medical personnel who should be avoided at all cost. Unless they have reasons to want a method of reducing our population.

    They haven't an incling when they make statements like 'stop for THREE months'. You can just imagine the state the patient would be by following their ??? advice.

    Do as you are doing, making yourself well, relieving all of your miserable and disabling symptoms.

    :) :)

    It's no surprise that the amount of members are increasing on this forum - glaring incompetence.

  • If @Dreamer12 stops for 3 months then the troublemaker will be gone and their problem will be solved...

  • Hi Bluebug!!

    Oh yes I'm viewed as a troublemaker now at my doctors surgery! I had nasty calls from doctors about " heart attacks and "brain damage" if I took the Levothyroxine that the NHS PRESCRIBED via the Renal Clinic. It soo crystal clear that different Consultants from different departments are not allowed to work collaboratively for the good of the patient! Yes!! I'm sure my kidneys would slump significantly and how much would that cost the NHS to look after me, if I became very ill with respiratory problems!! So they would rather use public money to rush me into A & E four times , as happened in the last two years... than prescribe a ยฃ1.66 tablet!!! What a waste of public money!!! I have involved my MP, but I'm not sure if he can influence!! The consultants rally round each other and close ranks obviously!!! One day things will change I'm sure. Thank goodness Thyroid Uk exists to help people .... pushed aside with the disgusting treatment of Thyroid Patients in the UK. Xx ๐Ÿ˜€๐Ÿ˜€๐Ÿ˜€

  • Doctors don't care about wasting public money.

  • True! Beginning to wonder what they do care about ๐Ÿ˜ณ

  • shaws

    when they make statements like 'stop for THREE months'.

    A hypothyroid patient with no thyroid meds for three months wouldn't be able to win an argument with a bowl of custard. Doctors probably consider this to be a highly desirable outcome.

  • Thanks humanbean. Is the saying 'there's method in their Madness'. Seems to be. :)

  • Hi Shaws

    Thank you very much for your reply .. yes you are so right! It is laughable but shocking that thyroid patients are being treated with complete disregard!! I will continue to treat myself, I will certainly not get better with the NHS. Shame on them!!

    Hugs xxx

  • As they say 'the proof of the pudding is in the eating'.

  • Exactly!!! Xxxx

  • What cracks me up is that they treat the paper & not the patient!! My Mum went for her yearly check of her levels, (was fine & had no symptoms) few days later she got a phone call from a GP at her practice to say that her levels where too high & tgat she was to stop her Thyroxine for 6 weeks & come back to get her levels checked. 5 1/2 weeks later my Mum was in the resus department of our local A&E. She was attached to a ventilator for 6 weeks & in that time contracted MRSA & Sepsis!!! Thankfully my Mum is a fighter & is lucky to be alive today. Before all this, my Mum was very lucky & the only symtom she had was the occasional tiredness, but now she has every symptom under the sun!! It's only through sheer frustration & knowing that this isn't "normal" for my Mum thst i came across this page. I recently post my Mums levels, on here & was advised thst my Mum could do with upping her Thyroxine & get her Folate, Vitamin B12, Vitamin D etc checked as she may have trouble converting. Why am i having to rely on people on this website to tell me this?? Why aren't the GP or the Endocrine Consultants telling me this info?? Anyhoo, when we went to the hospital it was a total waste of time!! Firstly, I had to plead with the GP to get these bloods done, she referred my Mum to the Marie Curie, thinking there was something more sinister going on. The doc said that there wasn't & would do the bloods for me. I explained everything to her & she suggested saying the the Endocrine doc that she should start a trial of a higher dose. When we went he said my Mum's levels where "fine" that he didn't what to increase the Thyroxine as it could effect her heart. He did say that her Vitamin D was low. That the symptoms that she was having where not related to her thyroid, so tgere for he was gonna discharge her from the clinic!!! My Mum has increased her Thyroxine for just over a week now & already she is slowly feeling better. And it is only with the help of the people on this page that she is. It does worry you when they say it can effect your heart. But I don't understand how they can say your levels are too high if they are still within range! God knows what I'll do when the Thyroxine runs out or they go to check my Mum's bloods & they say that her levels are too high. I guess I'll cross that bridge when I come to It, but all I know is that I can see a difference in my Mum & that surely is all that counts?? Not what a piece of paper says??

  • Hi Mags_23

    What's wrong with these medics.. putting people's lives at serious risk. So sorry to hear your mum was very ill in 'resus' and on a ventilator for 6 weeks. That's shocking and proves that these TSH guidelines are useless!!! Breathing issues was my main symptom in 2015 and they said it was probably asthma. But it wasn't!! Two years of struggling with breathing could have been avoided. No inhalers at all now and fine thanks to Thyroid being treated!! Kidney function doubled! But the advice from the NHS yesterday is to STOP the medication for 3 months!! Your mum is lucky she has you to look out for her and get great advice on Thyroid UK like I did. I think there was more chance I would have had a heart attack without treatment and I could not function before. Hope your mum gets better every day. Take care. Hugs x

  • Even worse is lots of doctors don't recognise asthma can be a very serious condition. So saying you have asthma is not the get out of jail card they think.

  • The inhalers and steroids did not really make much difference and it only after 18 months of coughing and wheezing I got the Asthma Challenge test and Asthma was ruled out!

  • Exactly!! It's definitely your life in their hands! It's only now that we realise that they don't always know what they are talking about! My Mum is 73 & of the generation where doctor knows best & if they had told her to sign a form to get her right arm amputated to make her feel better, then she would!! I have taken my complaint further after the response I got from the GP in question was just a joke!! It's now in the hands of the Medical Ombudsmen.

  • Hi Mags_23

    Yes all of us believed everything medics told us in the past I'm sure!! ๐Ÿ˜‚๐Ÿ˜‚"amputate her right arm"well we are in the know now and we know how to get better and in your case your mum! Let me know how you get on with Ombudsman please. Best wishes to you and your mum xxxxx

  • There are risks related to unecessary Levothyroxine treatment as this can suppress natural thyroxine hormone production and cause iatrogenic damage due to over-replacement long-term. This is associated with increased risks of osteoporosis

    My mother, who was hypothyroid, was a doctor's dream patient. She never complained, was compliant with her meds, and never disagreed with doctors. She just did exactly what she was told.

    Despite this, my mother's osteoporosis was so bad that, when she was investigated for hip replacements which she desperately needed, she was told that her hips were too weak and replacements would just drop out, so she couldn't have them. She also had multiple cracked vertebrae.

    My mother was put on 75mcg Levo in the 1980s and from then until she died about 30 years later her dose was never changed.

  • Hi Humanbean

    Thank you for sharing the sad story of your mother and how she had no medication Review for all of those years. It's hard to believe that doctors can get away with their treatment if thyroid patients. So sorry your mum had osteoporosis so severely. Xx

  • Oh, she had medicine reviews. But the doctor decided her Levo dose was just fine. What I would love to know is whether or not her Free T3 was ever tested - I would suspect it never was. And, certainly towards the end of her life, her doctor thought a TSH of nearly 3 was absolutely fine. What it had been when she was younger I have no idea. I do remember that my mother was always, always tired from her 40s onwards, and from her 50s onwards (when she started Levo) she got fatter and fatter and fatter. In her youth she was very slim and active.

    My mother, like all the females on her side of the family and a few of the males, had life-long low iron which often developed into outright anaemia. (And she would be given a couple of months of iron supplements to "fix" the problem - until next time.) As we know on this forum iron/ferritin levels have to be good for patients to get some benefit from their thyroid meds.

    I have reason to believe that she had low B12 as well.

    I think my mother is a good example of what happens to people who had no access to the information that people with underactive thyroid have now, and who are too deferential to their doctors.

  • Sorry im not clear on what u are saying.

    Im on t4 in the morning and t3 at night which also contains t4 ive recently been told.

    And im pretty sure im not in good health after i take my meds i feel worse especially in my brain. Always ringing noises and i don't sleep well. Cant get to sleep at night after t3.

    Im also at my wits end as when i half the t4 i feel hypo and im taking a quarter t3 at night.

    I have hoshimoto as well and im sure its affecting kidneys and my heart.

    Why can't doctors get it right after all They do the bloodwork.

    Im on a super strict auto immune paleo diet.

    What do u mean you are self medicating and are off your meds?

    Do u feel beter without the t4 ?

  • I buy my own medication x

  • T3 doesn't contain T4 it contains T3. T3 is the active thyroid hormone. When T3 levels are too low people feel hypothyroid, when they are too high people feel hyperthyroid.

    T4 (Levo) contains T4 only, but in the body it should convert to T3. But some people don't convert very well.

    NDT (i.e. Armour, Erfa, Thryoid-S and several other brands) contains mainly T4 and some T3.

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