Hyperhyroidism since 2017

[Angel20]

As many of you may have read my story, hyperhyroidism started from 2017 although initially a couple of Endo's said it was Graves Disease, similar symptoms for both perhaps. After some persuasion I did try Carbimazole 10mg a day, split into two dosage 5mg am and 5mg pm, carbimazole did not work for me at all, within 6 weeks I was told by my GP to top immediately otherwise I would end up in A&E as I stopped eating, and my tummy bloated.

Three days ago I had Thyroid ultrasound scan at the hospital, I agreed to have this scan as I wanted to know if everything was ok with nodules etc. Seeing the Endo next week for my results.

What is interesting after a few years of hyperthyroidism I feel ok, from the beginning I did not suffer from severe symptoms, just a very fine hand tremor, almost now not noticeable at all. My hair has not fallen out, I do not have palpitations, I do not sweat, I sleep extremely well, I was able to go away this year abroad it did wonders for my wellbeing. I actually put some weight on.

I am against taking any form of anti-thyroid tablets carbimazole or PTU, I do not listen to Endo's, I listen to my body, how I feel, right now I am in a good place.

The ultrasound scan is far more important to put my mind at rest that there is nothing sinister going on, and perhaps it may show what is causing hyperthyroidism.

I will bring you up to date as soon after my hospital appointment with Endocrinologist.

[Cat4health]

Hi Angel, I had a very similar experience with hyperthyroidism. Next to no symptoms. I wonder if that carbimazole dose was too high as I went on a regiment with extremely low doses and responded strongly to doses as low as 1.25-2.5mg a day.

It's great to hear of someone else without symptoms though. Good luck with your scan it'll be interesting to hear how you get on

[Angel20 in reply to Cat4health]

Hello Cat4health, well so far I was seen by 3 Endocrinologist, 2 of the Endocrinologists wanted me to start on a high dosage of carbimazole, I refused, so we compromised to 10mg per day, these Endo's are very quick to jump the gun, they think by dishing out tablets it will resolve hyperthyroidism. The third Endo wanted me to start on 40mg carbimazole a day, she also threatened me that if I did not take the tablets she would send me back to my GP, it was then I decided to inform my GP of the situation, I then stopped seeing her. I carried on regardless without any form of anti-thyroid tablets.

[Cat4health in reply to Angel20]

I know exactly what you mean Angel. I've seen more Endos than I can count and more often than not they'll threaten me. I've been told I will die, am dying, my heart will just stop, I'm causing irreparable dame- all without any evidence these statements and all proven total bullshit when I've gone on to recover. Do you follow Elaine Moore she has great content, including more natural methods to keep your thyroid is check and also notably to achieve remission. I have achieved remission twice now. As in normal tah n little to no antibodies visible. It's worth checking her stuff out

[Angel20 in reply to Cat4health]

Many of us are on the same boat, we rely on the expertise of the Endocrinologists, I also listen to my body, the tablet failed me I could not tolerate them. I am sceptical only because I know me, when I went through two funerals my parents died within 5 months of each other due to health issues, my body went into overdrive, stress is the real culprit. I do follow Elaine Moore.

[pennyannie]

Hey there again :

Well are we looking at an auto immune disease that tends to wax and wane and in patients who do not show complications or an economic burden from the hyperthyroidism I agree that the medical intervention is likely worse than the disease itself.

It is a question of degree and there are some people who will likely need medical intervention if the AT drugs do not ease the patients symptoms and the patient is further compromised.

I believe there is research from Korea suggesting that the longer the patient is on the AT drug the lower the relapse rate in Graves Disease which then makes me question why the NHS suggest only a 15-18 month window with the AT drugs and encourage RAI or surgery.

It would seem most cases are resolved in a 2-5 year window though a 4-11 year period was also mentioned as I think it depends on which Graves antibodies are involved.

Ultimately, it does seem, Graves will burn itself it, and it's just a question of degree.

Most people are prescribed the AT medication as the implications of Graves Disease do impinge on life and work but I just wish mainstream medics were better informed and enabled to encourage patients to keep their thyroids and to stay on long term AT medication rather than encouraged " the quick, cheap fix route of RAI " which it is for the hospital but not for very many patients left very short changed in primary care.

RAI " therapy " for an auto immune disease makes no short or long term health sense and should be banned from use for Graves Disease.

Sorry - I haven't links to these research papers but they should be on here somewhere as this is where I found them.

[Angel20 in reply to pennyannie]

Hello pennyannieGraves Disease is an auto immune disease, in my case when I was first seen by the 1st Endocrinologist, he immediately jumped to his own conclusion that I had Graves Disease, the second Endocrinologist stated that I did not have Graves Disease at all, I had hyperthyroidism both Endocrinologists went by the blood results, no further evaluation nor thyroid scans were carried out at all the tablets were suggested for me to take, which I did for 6 weeks and I felt terribly unwell. As for RAI no doctor can persuade me to have it, I am doing ok by myself at least for now.

[Hugoo]

Really interesting.I have nodules and I’m only on 2.5 mg Carbimazole 3 times a week. Will be interesting to see scan results. Good Wishes.

[Angel20 in reply to Hugoo]

Thank you Hugoo

[glo42]

I have had a hyperthyroid condition since 2011. I consider that I'm one of the more fortunate ones as I had minimal Carbimazole side effects initially until the correct dose was eventually worked out. Good luck with your scan and I will look out for your results.

[Angel20 in reply to glo42]

Thank you glo42

[PurpleNails Administrator]

What are your blood test saying? Is your FT3 & FT4 elevated or very high and what about Antibodies? Positive TSI or TRab confirms Graves.

A ultrasound scan can detect nodules but not tell you which areas of the thyroid are functioning normally or not.

If the rise in levels is very gradual you may be adapting without realising symptoms.

[Angel20 in reply to PurpleNails]

The last blood test results are listed on my profile, I have not had further blood tests as these were not requested. Due to Omicron, the Endocrinologist will call me rather than me going to the hospital to see her, so we shall see what she may suggest.

[purple64]

Hi Angel, it would be interesting to know what your blood levels are. I hope the ultrasound results are ok. I guess we are all different and some have severe symptoms in the beginning, I couldn’t even hold a mug with the tremors and had very little sleep, constantly hot and lost 2 stone. Obviously carbimazole is not for you or maybe the dose was too high and you only need a small amount once or twice a week 🤷‍♀️.

Hopefully your Endo is good and will be able to sort it all out. It’s good news that you feel well. Keep well and safe x

[Angel20 in reply to purple64]

Hello purple64, if I am being honest I lost confidence in Endo's, they go by the script by the standard without treating an individual as a person who may not be the same as the others with hyperthyroidism, their first call is to give tablets, we shall see how I proceed. Thank you ever so much for your response.

[Bellazzurra]

I think maybe the Carbimazole dose was too high for you and so you were going into hypo mode with the bloating and loss of appetite. Unfortunately, there are many endos out there who aren’t good at monitoring their patients closely and adjusting the dose of Carbimazole accordingly.

[Angel20 in reply to Bellazzurra]

Bellazzura Hello10mg carbimazole as a starting point they consider it low so I have been told! perhaps it was too high, but seriously I had to persuade them to give me a lower dosage that is 10mg, they wanted me to start 40mg per day far too high I refused. This is what I said before, they treat everyone by their standard, the treatment is to start high and reduce the dosage, I always maintained that it should be reversed, start low and increase as needed.

[Bellazzurra]

Hello! 10mg may well be too high for you, but the trouble is that so many endocrinologists use a one-size-fits-all approach when it comes to thyroid disease. It’s incredibly frustrating as a patient. The first endo I worked with started me on 60mg and it was way too high for me and a terrible experience as a result. Within a month, I was hypothyroid and suffering from those symptoms on top of the Graves’ Disease symptoms. I only started feeling well at 10mg, twice daily, and now I’m down to 50mg a week (mind you, this wouldn’t have happened without me switching to an endo who is very experienced and empathetic). Some people need a very low dose of Carbimazole and not taken on a daily basis. Something like 2.5mg taken 3 days a week, or even lower. It’s all so specific to each person’s body.