Hyperthyroidism with left side toxic adenoma - first post help needed

[Lolcir]

First post so probably slightly too long. I haven't been feeling well since Jan 18, rapid heart beat, anxious, slightly down, noticeable tremor, poor sleep and a couple of panic attacks, went to my doc in the UK who prescribed anti depressants, I did not take these as I was going on holiday to America and thought that the break might make me feel better/more relaxed. Whilst in America I did not feel that well and thought I would have some blood tests done to see what vitamins I was lacking, whilst doing this they tested my thyroid and it came back that I had hyperthyroidism. After landing back in the UK I had a lump appear on my neck, I went to the doctors and they sent me to an Endocrinologist at the local hospital where they done an uptake scan which confirmed the toxic adenoma.

My readings for blood are:

TSH 3rd Gen - 0.005L

T3 - 11.3

T4 - 24.4

TS4 - 0.02

Calcium normal at 2.52 so they have not checked parathyroid.

The letter from the doctor states uptake scan has shown all the activity is within this nodule with high uptake on the left hand side but has bilobed areas of increase trace of uptake is seen within the left side of the thyroid extending just across the midline, this suppresses the rest of the thyroid gland. Likely a bled into this nodule which is why it has got bigger more recently.

They have put me on carbimazole 20 mg a day and these have helped greatly.

The doctor has said that my options are surgical removal of the left side of my thyroid or radio iodine treatment. Neither of these sound that good to me.

I suffer from laryngospasms which scares me with going surgical and Im not keen on the radio iodine as the doctor said it would more than like give me an under active thyroid.

Im due to see the doctor next week and I have to have my bloods done again since being on carbimazole and I can see that he has only marked for the T3 & T4 to be assessed. Is there anymore blood tests that I should be asking for please?

Does anyone know if surgical removal or radio iodine are my only options with this?

Many thanks in advance for any help.

[Patsy74]

You need to think very carefully about either option. Certainly if you have the radio iodine treatment your thyroid will be knocked out and you will then have to use levothyroxine daily for the rest of your life. Again there is always a risk that you cannot take levothyroxine although you do seem to have no problems with carbomisole which I did. ( I can only take the natural product Armour thyroid which is not available on the NHS and I have to buy my own from America which is expensive)

If I had my time again I would opt for surgery had it been an option but for me it was complicated because I had a number of nodules growing on my thyroid which were difficult to remove. Having radio iodine treatment is a done for treatment with no going back whereas having surgery means you can slowly establish, ( I know in stages and it might mean more than one op ) whether you are making the right decision for you.

It’s a rotten stage to have to go through and feeling lousy is no joke. I feel for you.

All the best. Pat Smith

[pennyannie]

Hello Lolcir

I had RAI in 2005 and am on this site learning all I can to get my health back -

I have Graves Disease, and now, after 1-131 treatment I also have thyroid eye disease and hypothyroidism as well as my original Graves Disease.

There is an article by Professor Toft, available on this site, stating he is no longer referring his patients for RAI due to the lack of understanding and management in primary care.

I think that says it all.

RAI is toxic, it goes through your whole body, it's final - you will be hypothyroid and as can be seen from this site - it doesn't necessarily do the trick for everybody. True this site only attracts those with a problem, but even so, why put yourself through something that is not 100% safe ?

Yes, it is a quick fix, a 20 minute outpatient appointment, have a drink, go home, and go to your doctor for monitoring. It does sound less scary than surgery doesn't it ?

If I knew then what I know now I would have preferred to have my thyroid out.

I didn't have a choice, it was RAI or RAI ????

Anyway, I think it might be prudent to post your full blood tests and have some of the experts cast an eye over the numbers and give you solid advice.

[Shinbone]

Hello. I have been hyperthyroid since 2015. Where it not for this forum and Elaine Moore Graves' Disease & Autoimmune Disease Education

: elaine-moore.com/ I honestly don't know where I would be. PLEASE log on to the Elaine Moore's website. She is a doctor, had Graves herself and is a wealth of information on Graves. You can post a question and Elaine will answer you. There is no charge for this. I can honestly say she has been an amazing help to me and ultimately has given me my life back. I wish you all the best and please rest assured life will get better.

[cabro2]

I would want anti-TPO and TSI, along with TSH. T3 and T4 must be “free T3” and “free T4,” instead of Total T3 and 4. It would be wise to rule out Hashimoto’s with anti-Thyroglobulin (TgAB). If you should have exophthalmos, I would consider TT ASAP, but after a consult with an eye specialist whose specialty is Graves’ eye diseases. Wishing you all the best.

[Lolcir]

Many thanks Patsy, pennyannie, Shinbone and Cabro - very helpful. Ive re-done my bloods today, will post the results once I have them and revert back to you all. I am going along the lines that against the radio iodine. Loved the site you mentioned shinbone, very helpful. trying to get my head around it all and understand all the medical terms! thank you for taking the time to reply to me and help me on this journey.