Hyperthyroidism and treatment question

[Pineapplepen]

I recently got diagnosed with hyperthyroidism. My doctor has told me it's either RAI or surgery and I am trying to understand whether this is the normal course of action or whether people would tend to be put on medication first. My doctor seemed very reluctant to give medication. I live in Japan, so there will of course be differences across countries and their treatment. I am originally from the UK. Would medication have no effect and this is why RAI is being suggested? I'm trying to look for answers but having no luck, so I would appreciate any help.

Thank you

Just to add my blood test results (standard values are in brackets):

FT3 is 6.5 pg/ml (2.2〜4.3)

FT4 is 2.15 ng/dl (0.80〜1.60)

TSH is 0.01 uIU/ml (0.20〜4.50)

TRAb is 0.800 IU/L (under 2.0)

TgAb is 13.2 IU/ml (less than or equal to 40)

TPOAb is 9.00 IU/ml (less than or equal to 28)

HTg is 258.00 ng/ml (less than 33.7)

[humanbean]

No, your doctor is not doing what is normally done for people with hyperthyroidism. I know that drastic treatment is given earlier in some countries than others, but don't allow yourself to be bullied.

A very good website for people with hyperthyroidism is this one written by a sufferer of hyperthyroidism - do as much reading as you can :

elaine-moore.com/

You should be given time to try anti-thyroid (AT) drugs first. The thyroid is not a disposable piece of human waste, it is an essential piece of equipment. Some people find that they can put their hyperthyroidism into remission with the help of AT drugs. There are people on this forum who have developed hyperthyroidism but have now been in remission for several years after spending a year or more on AT drugs. And even if people relapse, some people have done well with more than one stint on AT drugs.

Yes, people can live with a partially destroyed thyroid (after RAI) or without a thyroid (after thyroid removal) but there are ways and means of trying to preserve your thyroid before doing anything which can't be undone. And quality of life is often reduced after surgery or RAI.

Doctors will often tell patients that having no thyroid is not a big deal and all they need to take is "one little pill" and they usually hold their fingers out to demonstrate how small the pill is. This always makes me angry when I read about this happening because it is so condescending. Women aren't children who need to be coaxed to take the pill the nasty man is telling them about! And the fact the pill is small is of no consequence - it's the lack of a thyroid that is the important bit!

Don't do anything that can't be undone, don't allow yourself to be forced into having treatment or surgery you don't want, take your time, and learn about your condition.

I'm afraid your results are not helpful without the reference ranges. Could you add them to your post?

[Pineapplepen in reply to humanbean]

Thank you for your reply. I have amended my previous post with the standard values that I was given along with the results. I am not sure if that helps? Hopefully it's a bit clearer.

Thank you for the link. I don't think mine is an autoimmune disease as the doctor told me due to my blood results it wasn't Graves disease. I think it is a toxic goitre that is causing me to have too much thyroid hormone. I can't understand whether in cases of it being a toxic goitre, that medicine doesn't work and RAI is standard practice or whether my doctor just doesn't want to try medicine. I am going to a specialised thyroid hospital but I am still unclear as to the usual action taken with hyperthyroidism not associated with Graves as most of the information seems to be related to that.

A really big thank you for getting back to me, it's nice to feel not as alone as I was!

[Lora7again in reply to Pineapplepen]

I would definitely not have RAI or surgery unless it is cancer. I was advised to do that 10 years ago by my Endocrinologist and here I am still with my thyroid. Sometimes you have no choice but to have your thyroid removed but a lot of people can take carbimazole for years and as long as they have regular blood tests they are ok. Also you could go into remission like I have twice and at the moment I feel well and I am taking no medication. I'm not saying it has been easy for me but you can read my story on my profile page if you are interested. Also Elaine Moore's site is very good and I would join it if I was you. She helped me get diagnosed when my GP told me everything was "normal" for over 2 years.

[pennyannie]

Hello Pineapplepen

I think you doctor maybe jumping the gun, as your goitre maybe very slow growing and I read it can take many years before radical surgery may need to be considered.

I would have thought in the first instance you would be offered anti thyroid medication to stop your own thyroid production, and thereby reduce the symptoms expressed and make you more comfortable whilst you are referred to the specialist thyroid clinic.

Radioactive iodine slowly burns out your thyroid in situ. It is a relatively easy, quick fix, and just a 20 minute outpatient appointment and whether you ingest RAI as a drink or a tablet this is ' toxic waste ' and it can cause further damage as it is taken up by other glands and organs within the body, and can cause you to develop thyroid eye disease. I read the dose administered is not exacting and as it slowly burns out and disables your thyroid in situ, management of this period of ' flux ' can be a challenge to both the patient and medical establishment.

Surgery is a much ' cleaner ' and more precise final treatment to consider if your goitre becomes unbearable and intolerable to manage. The thyroid is removed, in total, and there is an acknowledgement that you are ' without a thyroid ' and therefore may need to have full thyroid hormone replacement.

Living without a thyroid comes with it's own set of problems and challenges.

The thyroid is a major gland responsible for full body synchronisation, including your physical, mental, emotional, psychological and spiritual wellbeing, your inner central heating system and your metabolism.

The thyroid is known to produce T1. T2. T3 T4 and calcitonin and currently in the uk only one thyroid hormone T4 is routinely prescribed on the NHS. and the medical profession seem to believe that there is no necessity to replace like with like and do not offer full thyroid hormone replacement.

The levels of T1. T2. and calcitonin are said to be negligible, but there is a measure and an understanding of the thyroid producing levels of T3 and T4 and the necessity for both these essential, vital hormones to be measured, balanced, and if necessary supplemented to offer the patient a good level of well being.

Some countries offer NDT - Natural Desiccated Thyroid which was the successful treatment for hypothyroidism for over 100 years prior to the 1960's and the global, corporate capitalisation of Big Pharma.

Some countries also acknowledge after a thyroidectomy, T3 and T4 may need to be considered and on the patient's prescription.

I'm with Graves Disease and after RAI treatment in 2005 I also developed thyroid eye disease, and my treatment was Levothyroxine T4 only. I became very ill some 8 years after treatment when I'm guessing my thyroid fully gave up and what I believe were the consequences of this treatment alongside years of inadequate thyroid hormone replacement, as I was being dosed and monitored on just a TSH blood test result.

There are full details on my profile page and I now manage lingering Graves symptoms, thyroid eye disease and hypothyroidism.

I am self medicating and buying my own full thyroid hormone replacement and much improved thanks in the most part to this amazing website and the Elaine Moore book, Graves Disease A Practical Guide. Elaine now has the most comprehensive website and has a world wide following, and there is an open forum, much like here where you can ask and find help from the many members, and Elaine herself answers personally should you wish to go that route.