Been away for 4 months abroad to Greece, wonderful time, my hyperthyroidism symptoms were not evident, feel good, no tremors I feel stable. I am not taking any anti-thyroid tablets what I have experienced is that stress one of the culprits that is when personally I feel a little shaky.
Had a telephone call from the Endo asking me how I felt then continued to say I should have blood tests to see where we are with my thyroid, no problem there of course I will have the blood tests next week, but then he went on to say there is alternative ways, one of them is radio active to basically kill off my thyroid, no way.
I am not impressed, the Endos have one track mind, tablets high dosage at that not taking into account that a person may not suffer severe hyperthyroidism and yet they insist to start the anti thyroid tablets at high dosage why !
I am willing to have the blood tests, I know the answer my levels will not be ok, but I listen to my body, the doctor was saying COULD have heart issues in 5 years time, COULD ! is not definite since I had this condition from 2017 - that is 5 years ago.
I was taking 5mg carb mornings and 5mg at night my body did not like as I mentioned it the doctor he was still saying I should start on high dosage, mmm was he listening to me!
Unless the Endo's start looking at the person as individuals to investigate at least the cause they should not dish out tablets one treatment for all ! Nothing has been explored nor developed nothing new is available and so patients are being treated same. These Endos know very well the consequences of having radio active and yet they still push for it because they have nothing else to offer.
Your thoughts appreciated.
Written by
Angel20
To view profiles and participate in discussions please or .
First you need to know your levels then you can judge better.
If it a case of low TSH verses high very above range FT4 & FT3 then my advice is going to be different.
You might feel well and adjusted to having high levels but higher & longer the thyroid levels, the higher the long term risk.
While I agree with you, doctors over emphasise the risks to “persuade” you to comply with their plan, (which is wrong) - it’s only right I say long term hyper levels really could be to detrimental to your health.
You didn’t get on with carbimazole, we’re you offered PTU?
Did you start / remain on propranolol? That can help symptoms & has antithyroid action element.
Endocrinologist do literally have single track. That they are expected to follow - 1 approach - same for all.
Low thyroid hormones are gradually increased but doctors view hyper as life threatening & knock it down abruptly. When it’s very high that might be appropriate, but if accustomed to higher levels or sensitive to fluctuations, it might be better to do it slowly.
Your right there isn’t much research going on. Although recently I read about a doctor researching a thyroid related treatment. I was exited until I read further - ways to make boost RAI & make more effective. I was cross by time I finished reading about it as it discusses how the treatment hasn’t progresses on 70 years and the process of how it reaches the membrane of cells isn’t fully understood!
Hello PurpleNails, I am hearing what you are saying. PTU I will not touch my mother died from liver disease she did not drink and PTU carries a high risk to impact on the liver.
I am not in agreement with the Endo to start me on carbimazole on a high dosage, this approach should stop and look at us as individuals we are all different; a high dosage will send me to A&E.
I have never taken propranolol as I did not need it. I have been taking vitamins, I am mostly a vegetarian although I do have a small piece of meat or chicken occasionally, my diet is mostly Mediterranean.
The hyperthyroidism\Graves disease surfaced early summer 2017, I have not progressed to a stage where I feel I need carbimazole, having said that, I am willing to give it a go again! on a low dosage since I do not suffer tremors, palpitations etc. the thing is the Endo if he insists on a high dosage I will walk away.
As for RAI I have read it can give cancer of the esophagus and lungs, very frightening to say the least.
I am in the same boat with this - I declined medication due to evidence of previous poor treatment, endo told me “to not base my decisions on emotion” ?? Despite my evidence?? I agreed to blood tests and to date haven’t received any results 🤷♀️ No contact from endo or GP …. My experience is If you don’t conform to the generic treatment plan you’re, emotional, difficult and not worth bothering with.
I’ve completely given up on clinical intervention and have succumb to the condition (still no confirmation on what’s caused the hyper) just taking me. Like you I have no symptoms.
I really hope you get a better experience than me and the treatment plan that works for you xx
The Endo wrote to my GP and copied me into his letter, the Endo basically said I was hyper and he would write to me again in 3 months. Also something I did not say nor agreed with the Endo he specifically said in his letter that I would consider RAI to which I am totally against. Let him dream on, he can write in 3 months, I will not be responding as I am listening to my body. I have no symptoms, however, I have noticed for whatever reason I become stressed that is when my body reacts, stress is the culprit for me, sometimes it is not in our control and situations can be stressful, this I must correct as it does me no good.
Initially I lost weight, this weight is coming back now, my appetite has increased and really enjoy my food.
Pictbiker, have you lost weight! this is one of the symptoms, however, listen to your body if you are well and do not have tremors in your hands, if you are eating well, sleeping well, continue as you are, I say this because all Endo's have one track mind, they use their gold standard for all, the thing is we are all different.
I did try anti-thyroid tablets after 3 weeks or so I stopped eating, my tummy was bloated, my body reacted badly so therefore I stopped.
This new Endo when he heard I did not do well on carbimazole, he immediately wanted to give me PTU which I am totally against as it can play havoc with ones liver, my mother died of liver disease there was no way I would take PTU.
My motto is this, when I wake up in the morning and I feel good, I sleep and eat well, no tremors in my hands, I see no reason why I should be on tablets. Listen to your body it knows best.
😊
interestingly in the last week my endo discharged me because I refused medication.
However after the admin staff did some digging they found my T4 is slowly moving back down and is now at 28 from 36!
I didn’t lose weight I gained it! I get constipated. Heart rate etc all within normal range. A little TED in left eye but managing it well with selenium supplements. Had few and very mild symptoms and some didn’t add up a t all but I went to the GP after a bout of exhaustion and feeling very ill for a week and they did bloods and found me to be hyperthyroid in July this year.
A friend (a nurse) said some of the side effects to treatment look on par with chemo!!
Thankfully as the endo has discharged me I won’t have to deal with him again - although my husband works for the CQC so investigations will now take place.
Endo's will discharge anyone when they refuse anti-thyroid tablets, there is nothing more they can offer, and destroying ones thyroid is not the answer. My condition ! I had since 2017 and as time goes by, I am not any worse, in actual fact I feel fine, although my blood tests are showing I am hyperthyroid, this is why I listen to my body, I eat well, I sleep well, I a active in moderation, go to the gym I take vitamins too. The side effects of carbimazole are not nice. Having said that, there are people who do need anti-thyroid tablets, and many managed well, it is up to each individual to decide whether they want to be treated by the Endo or not. Personally I feel they have not made much progress and the protocol is the same since the 50's.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update since last post
Update to my previous post
My readings over the last 12 months (verbal from GP) New diagnosis. 
Just a follow up to my post last week
Dose change 2 months ago - now feeling awful :(
