Hello. I had graves disease 30 years ago. Was treated with radio active iodine. Was on thyroid replacement within a couple of month. Have been on 150 - 200 dose ever since and life has been good. With the exception of taking a pill everyday, I am normal. I loved last year to another area in Canada. My new doctor has decided it would be a good idea for me to completely stop taking the drugs. In 8 weeks he would do tests to get a base line and then look for trends as he adds the drugs back if needed. I am 4 weeks off the drugs. I am exhausted. Falling asleep at my desk at work. I can't think. I can't concentrate. My face is puffy. The bags under my eyes are starting to include most of my cheeks. I feel and look like I have aged 20 years in the last month. My husband say I am not but I feel like I am slurring my words when I talk. I am completely not functioning. A nurse argued with the doctor last week so I could get blood work this week . We are waiting for results, but he was saying he still thinks I should wait until after 8 weeks to even consider going back on. How dangerous is this?
How dangerous is this. Doctor suddenly told me ... - Thyroid UK
How dangerous is this. Doctor suddenly told me to stop taking my high dose thyroid replacement after 30+ years.
Extremely dangerous! The man's a maniac. Does he realise you don't have a thyroid? Does he even know what a thyroid is? I think you should tell him to go to hell, find another doctor, go back on thyroid replacement immediately, and then write a stiff letter of complaint about him to his superiors. And pray to god that no damage has been done. You cannot live without thyroid hormone.
Echo what Greygoose says.
He sounds like a sadistic dabbler for his own ends and not caring for his patient's wellbeing and quality of life.
Ronsgirl,
Your new doctor should show you the way. Tell him to give up food for eight weeks to see what his baseline weight should be. For good measure, give up drinking and, hopefully, breathing.
It is potentially extremely dangerous. We saw the other day a post where the person ended up in myxoedema coma in intensive care due to insufficient thyroid hormone.
Just what does he expect to get from finding that the baseline thyroid hormone levels of someone who has had their thyroid destroyed is close to zero? Just what relation does your situation have to the "normal" levels that those who never had Graves, and never had to take thyroid hormones, have to you?
Your whole body will have adjusted, so far as it can, to the regime you have been on. Other than in extremes which might require sudden changes, any change should be slow, carefully considered, and properly monitored.
Finally, just what sort of informed consent does he believe he is working under? In my book, informed consent applies to non-treatment (as in withdrawal) just as much as any positive treatment.
If you ever get the chance, complain, report, whatever you can.
greygoose & spongecat - good responses.
I am pretty certain I will be filing a complaint to someone once this is settled. I just don't even have the energy for that right now.
I love the breathing bit! What a good idea.
"Tell him to give up food for eight weeks to see what his baseline weight should be. For good measure, give up drinking and, hopefully, breathing." OMG you made me laugh!
That doctor is completely INSANE. It's all the Bass Ackwards studies that have come out in recent years from doctors that don't understand what the thyroid does and what antibody tests to run to even find out if someone has hashimoto's.
Good grief, what a jerk! How dare he experiment on you!
I had to see the nurse practioner at my practice recently for something unrelated and he looked through my record and saw my TSH is suppressed. He queried whether I should even be on thyroid meds. I said as I had been on them for over 40 years then I think it would have shown up sometime ago if I didn't need them. He said it would be an interesting question to ask an endo, to which I replied I'd had that conversation with an endo 20 years ago, he decided to lower my Levo to the point that my suppressed TSH came back just inside the range and it made my FT4 plummet to the bottom of the range and turned me into a zombie, I had to give up working in my own business and needed looking after for 2 years and that I certainly won't be doing that again.
Take control, run away from this idiot, get back on your thyroid meds and I sincerely hope that you can get back to the point where you felt good, unfortunately I didn't and doubt that I ever will.
Thank you for sharing. I am at the point I am still showing up at work, but I am really not capable of actually doing my job. I am likely to get fired if my doctor isn't willing to give a medical leave. This has turned into a disaster. And I know it will take time to get back to where I am feeling good. It will not happen over night. The rapid deterioration over the past 4 days makes me worry I am headed for a coma. Up until the last 4 or 5 days I was tired, but not feeling this bad. What are the early indications for myxoedema? Anyone know?
Who cares? Take your medicine now! And take a few extra for the ones you missed!
Major fluid retention. When I was there I could gain/lose 20 pounds of fluid weight overnight. My BP was 245/148 for TWO YEARS and no doctor understood this was from low thyroid. When I was 40 is when my body crashed and thye gave me less than 2 years to live. I stopped seeing doctors and self medicated for 20 years and am now 63. Alot of damage was done to my orgams and cardiovascular system, but I am alive .
SS what did the Nurse Practitioner say to your response?
Treepie - he never actually responded to that, it was the first time I had seen him (receptionist allocates who you see when you tell them why you want an on the day appointment) and I did come across as very assertive in this instance! As I had gone to see him for a heart rate of 178 he got back to the business in hand, perhaps he didn't push it any further in case I had a heart attack on the spot 
I did wonder what he put on my record though, and maybe a GP will pick up on it at some time, but I won't budge.
Find another doctor as quickly as possible.
I've been on thyroid replacement for 34 years and I know how terrible I felt when it was reduced even a little bit. Please start taking your tablets again - you need them!!
Why didn't you get your medical records transferred to the new doctor? Then he wouldn't be playing the guinea pig game with you now. Get the records ASAP.
When the Endo took me off thyroid meds, She HAD my medical records and at the moment I had been on thyroid treatment for Hashimotos for 40 YEARS. She did not like that I was on T3 by itself, but everything else threatened to kill me as I have severe RT3 issues. It was the third time doctors have tried to kill me, ENOUGH!!!
I came off my thyroid hormone only for 2 weeks as advised by my endocrinologist. By day 10 I swelled up face and body and hot masses of adrenaline pouring out inside me across my middle , jolting me to wake up. I became unconscious rushed to hospital and put on a drip and T3.
It can kill you don't do it.
Sack him off
Do you have heart, Liver or kidney problems at all? If so, it could kill you ot go off thyroid medication for that long. My last Endo did this to me too. After 2 weeks I saw my GP and she told me to restart it as I was looking horrible, I have congestive heart failure CAUSED by low T3 and that is the only time it flares up. My liver was inflkamed and very low functioning. I fired this endo.
SeasideSusie hit the nail on the head, your ignorant, idiot doctor ran an experiment on you. He may as well have said, "I wonder what happens to the human body if I throw it infront of this truck?!". He is ignorant, don't walk, run to another doctor and get back on the meds which kept you healthy. Since you already know what keeps you healthy you only need the occasional blood test to make sure all of your levels are OK, don't let some dumb idiot mess around with you. If it works, stick with it.
Tell the nasty man you are not a lab rat for whatever experiment the sadist is carrying out. Please let us know how things go for you ....
Oh my God ... He’s ... Mad 😱
Find another Dr. before he kills you Because that’s what could very well happen without that hormone
....stupid man.
Good luck Luvvie
Mx🌹
Get a second opinion!
Take action NOW.
I have only been on thyroxine for 4 years since I had radioiodine treatment and since then they have been up and down with the doses trying to find the right level...last July when my dose was 150 I started to feel a lot better...then my doctor in his wisdom decided to reduce the dose...and he told me that patients always tend to feel better if they are overprescribed!!!all the old symptoms returned..drowsiness..forgetfulness..very bad joint aches.....so it seems that I have to put up with this for the rest of my life...just so the numbers look right on my records....I have a lot of other health problems ..arthritis...heart disease for which I already have one mechanical valve... .My thyroid doc told me at the time he was persuading me to consent to the radio iodine treatment that maybe!!I would put on a bit of weight but that would soon level out once they got the dose right which would only take a few months...he never warned me of all the other problems it would bring and that I would still feel so bad 4 years later.....if I could turn back time I would never have consented to it and have lost all faith in doctors
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Prof Toft - article just published now saying T3 is likely essential for many. Note especially he point about patients being under medicated after thyroidectomy or RAI
I'm curious why did you agree to stop your medication?
I was in similar situation few months back, got officially letter from my GP telling me they're stopping my meds and plan to test my bloods for a few months until my TSH goes above 5.
My 1st reaction was - are they crazy? What's the point?
Then I told him to f.off and changed surgery. Never stopped taking my meds.
Why would you follow you doctor advise to stop your meds?
Unbelievable. I'd sue him. You don't have a thyroid, you can't live without one unless you take replacement. Sometimes the RAI will just kill off a part and you may function Ok but that was obviously proven not to be the case with you.
Wow! I'm incredulous reading this! You poor thing ~ why would this egotistical maniac do this to you when you have felt well for all these years on your meds? Not many on here have had that, most are striving to get where you were. What 'trends' and 'baseline' does he expect to find in a person with no thyroid? *#!*#!?
Because your previous doctor was obviously just happy that you were well, and left 'well' alone, you have not been subjected to the medical abuse and bizzare notions of some others, and therefore you have trusted his 'wisdom' ~ this is not your fault ~ they should be trustworthy with our health!
Now that you are aware, you need to restart your meds and find another doctor ASAP who understands and is not a psychopath! Don't go back there, and don't worry about 'going against' the doctors wishes ~ his foolishishness is extremely detrimental to your health. I'm sorry that after so many years of feeling good, your health has been destroyed in this way.
Warmest wishes and good luck to you ~ please let us know the outcome ~ I hope you will be back to good health very soon. Mamapea x
This action is nothing less than treating you like a laboratory animal rather than a human being. No responsible doctor could suggest this course of action as some kind of experiment. What he is trying to find is an inhumane attempt to find out how much working thyroid you have left. But this is totally irrelevant. The dosage of T4 you are on should be maintained if you are feeling well on it. This example is so extreme one wonders if the man ought to be struck off. There is no medical ethics displayed here.
Am speechless.....!!!!!!! I dread to think what else he has done to patients since hes been practising. I wonder did he decide to stop a diabetic medicine to see how much insulin they could produce naturally......????
Maybe he should be hung upside down for eight weeks to see how his body adapts, whether he can-still eat, drink sleeps adequately and how he copes with daily hygene so they can evaluate whether Its necessary for him to ever be upright ever again.
He should be permanently struck off before he kills someone....if he hasn't already!
Find another doctor, report him & resume your medication as soon as possible.
Hi, please go back on your message immediately. Your doctor doesn't know what he is doing. You really can't live without a thyroid gland. After uou have started your meds again go and complain to the practice manager about what he has done. This is serious negligence. You must start taking straight away.
Update. I am in the hospital and i am getting synthroid by IV. My TSH was over 100. They said it was good I came in when I did. Thank you everyone for your advise and feedback
Did you tell them that the whole thing is due to your negligent, reckless doctor?
Oh, and we are very glad to hear you are okay!
Yes i explained the entire story. They were all in shock. I was the talk of rhe hospital. Most people had read about that extremely low thyroid in text books but never actually seen a real person with it. I was used a bit as a teaching opportunity but i was ok with that. They said if i hadnt come in when i did i would likely have fallen into a coma within a day or two. They gave me a list of doctors in the area accepting new patients that i should try going forward.
Glad to hear you will be looking for another doctor when you feel up to it. It might be a good idea to "interview them" before you sign up. You don't want to end up in the same situation again, so knowing how they treat people with very little or no thyroid function thanks to radioactive iodine treatment would be well worth knowing.
I'm also glad that you got the help you needed from the hospital, although you should never have been put in that situation in the first place! I hope your recovery isn't too long-drawn-out and you are soon on your feet again.
I am so glad you are recovering ~ your story needs publicising, because this could have ended VERY badly ~ which you obviously realise now. I don't think this doctor should be allowed to get away with this ~ he may practice this bizzare experiment on some other unsuspecting patient! I hope your new doctor will understand the seriousness of what has happened to you. I also hope you will stay on the forum in case you require further support ~ lots of very knowledgable members here to guide you :0)
Take care and keep in touch ((hugs)) Mamapea x
PS ~ let's hope they learnt something from the 'teaching opportunity' you provided them with!! x
I am filing a complaint and i have asked my lawyer for a referral to someone really good in medical malpractice
I have been home from the hospital a couple of days. Physical strength is coming back. Mental strength is coming back a little slower. I hope it comes back completely. Im sure my IQ has dropped significantly and i get headaches when i try to do too much. Is this normal in recovery from something like this?
I think you should be very kind and gentle to yourself - don't do too much so you can prevent the headaches. So pleased you received treatment before it was too late .... I have not had an experience such as yours but lots of horrid surgeries. I found it was often one step forward and then two back in the beginning. Take it slowly .... 😴 Are you satisfied with your ongoing care ? Is someone overseeing your case .... you deserve the very best .
I have an appointnent with a doctor that a few hospital staff highly recommend but not until march. They assure me that she is well worth the wait and i will see doctors at the walkin clinic for followup until then
Good ~ as Marz advises, don't over exert yourself until your strength has fully returned and make sure your vitamin and minerals are optimal to give you the best chance of full recovery. To be honest, I'm surprised you are only presenting with lethargy and headaches ~ you are doing well considering what you've been through.
Have they put you back on your original dose? Please keep us updated and stay well away from the freak that did this to you. I have a feeling you will be treated much better now and hopefully when you are well again they will leave you alone ~ pity you had to go through all this though. Have a good rest and don't worry, you will soon be back to normal. ((Hugs)) x
I was on iv 250 plus oral 175 in hospital. They released me on 175 to be monitored
So glad your on the road to recovery and the hospital acted so quickly, efficiently and with great support. You deserve a lot of pampering as you recover......let your lawyer manage your case on. If ever there was a case of medical negligence yours should make the GPs lawyer really squirm. I hope the GMC get involved!!
You take care,....take things slowly, your body has taken a real battering and it will take a while to recover. You need lots of rest. Big Hugs xx
Oops sorry.....GMC is in the uk!!
No problem. We have something similar here
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