Interesting study about early intervention for Graves Disease

[Greekchick]

I am posting a link to this study for those with Graves who are candidates for either RAI or TT. You may find it worth reading. Sending positive thoughts for your health to all.

ncbi.nlm.nih.gov/pubmed/286...

[ling]

Thank you.

Not sure what biochemical refers to, but believe there's some truth to this

[ling]

In the time it takes the antithyroid medication to bring levels into range, including antibodies levels, the disease continues to wreak whatever damage on the body.

For eg. even as FT4 FT3 TSH come relatively quickly under control, but if antibodies levels remain elevated and take time, months to years, to become normal, in the meantime, the high levels are still causing damage which may show up down the road in some new disease.

The question one should consider when deciding on TT as early intervention for Graves, is one's current state of health. I believe that a majority who develop thyroid conditions, physically and/or mentally are already not in a good state of health. It could be too much stress, poor diets, existing medical conditions, past illnesses, severe stressful life events, previous hurt to the body.

These and other significant health details, should be carefully assessed before deciding on TT which means substituting one condition for another. If one's body is already in poor condition, it may not be a good idea to turn it hypothyroid before at least trying to improve or boosting the current state.

All easier said than done.

[Greekchick in reply to ling]

I absolutely agree! I had a TT 5 weeks ago . In my case, I had no choice as to the removal of the gland as I became resistant to Tapazole and had a large toxic multinodular goiter . I held onto my thyroid for 25 years after I was diagnosed with hyperthyroidism and only developed Graves 2 years ago. Had I well remained controlled on Tapazole, surgery or RAI was not in the cards for me as far as I was concerned. I wanted my thyroid for as long as possible.

In an ideal world, I would not have had my thyroid removed. Sadly, I had to play the cards I was dealt, so to speak, as the goiter was crushing my vocal cords and windpipe.

I posted this mostly to help people who have to choose between RAI and surgery for a variety of reasons. Again, the choice is not great. Slow death versus execution by firing squad. Very tough choices for us in this situation.

Wishing you well and good health, and enjoyed reading your comments.

[ling in reply to Greekchick]

Yes so true

Slow death versus execution by firing squad.

Did u have the goitre from the start?

25 years!

I seriously admire your tenacity.

[Greekchick in reply to ling]

Hi Ling,

Yes I did. I developed the goiter after an episode of thyroiditis when I was in my late 20s. I had a flare up with swelling after my pregnancy in my 30s and then was always borderline. It was multinodular. At the time, I had a very conservative endo, which I was happy about, because as long as my bloods were OK and I had no symptoms, he left me alone and I stayed stable for a very long time. I was followed regularly every 6 months for 23 years, at which point I developed palpitations, weight loss, hair loss etc. I was started on Tapazole but my endo (my current endo is wonderful) wanted me to have RAI. I didn’t, and so we had an arrangement - as long as the Tapazole worked and I had no symptoms, he would let me remain on the drug therapy. If anything changed - we would talk about it.

Well, things did change after 2 years. I became resistant to Tapazole and the goiter doubled in size almost overnight, and there was no longer a choice about surgery - so I had it 5 weeks ago.

My surgeon, who did a fantastic job and is one of the kindest people I know, told my family after the surgery that I must be incredibly strong because he had no idea how I lived with my thyroid for so long. I had a grapefruit on one side and an orange on the other. I really wanted to keep my thyroid as long as was humanly possible and I tolerated a lot of discomfort because I had a working gland. I do have a very high tolerance for discomfort, it is true.

I have to say, overall, I feel much better since the surgery. I had a very rough time immediately following the operation because my body was so shocked by the removal of all that thyroxine even with the Synthroid and I still had my own thyroxine, of course. I had hives everywhere and cried nonstop for days. I couldn’t get out of bed for 2 weeks. I got such great support from the people on this forum and they helped me so much during that time.

The adjustment to the meds is a process , there is no question. It is a slow journey and not easy. But I no longer have that constant anxiety and terrible feeling all the time and my hair and skin are returning to normal. I’m getting there, one day at a time. Unlike some on this forum, I have caring and capable physicians who work with me as a team. I know I am one of the lucky ones - and in the end, it really is a trade off - one set of problems for another, but at least I am no longer poisoning my own body and I can try to restore myself to health with a good diet (I had that before) and resuming my exercise when I am able.

Thanks for writing and I look forward to your posts and hearing from you!

[ling in reply to Greekchick]

Thank you very much for sharing!

Sorry but what does multinodular mean?

Was there a reason that made u keep your thyroid for so long?

At 23 years, was there a trigger for the palpitations etc? Was there menopause onset as well?

Did the doubling of the goitre mean that surgery was the only option, and that RAI was not possible?

Were u able to work during those years?

How do u mean by poisoning your own body?

This is so true for all thyroid related conditions which many newly diagnosed realise only through time and trial and error -

The adjustment to the meds is a process , there is no question. It is a slow journey and not easy

Its wonderful u are on the way to feeling better. If anyone can do it, u can : )

[Greekchick]

Hi Ling,

Multinodular means that I had nodules growing on the thyroid that also produce thyroxine.

I kept my thyroid because I knew there would be difficulties once it was removed and I was worried about that. In retrospect, I wish I had it out sooner - things I thought were separate problems like anxiety attacks and joint pain actually came from thyroid.

Menopause did not affect things. However I was on HRT for 5 years. That may have helped things. Palpitations came two years ago when I was diagnosed with Graves. Did not have them before.

The size of the goiter made RAI not advisable because doctors were afraid of thyroid storm - dangerous increase in blood pressure leading to stroke and possibly death.

Poisoning body meaning that my thyroid was producing so much thyroxine that skin falling off, hair falling off etc.

Thanks again for your kind thought and good wishes - they help a lot! I too wish you good health and all the best.

[ling in reply to Greekchick]

So sorry! Late reply.

Realised that all prompting emails have stopped coming in?! The bell icon at top of page, however, was showing messages coming in.

Thank you very much for your reply!

The anxiety attacks - were thyroid levels in range?

Thyroid storm is a dangerous increase in blood pressure? Is it not sore throat, fever, low white blood cells count?

Was this poisoning of the body after u had developed Graves?

Thank you very much

God bless you : )

[Greekchick in reply to ling]

Hi Ling,

My blood work was always in normal range until 2 years ago. Then I was put on Tapazole. My serious symptoms started 2 years ago. I was OK until last October when my goiter doubled in size and then I became resistant to Tapazole. That’s when I was diagnosed with Graves.

Thyroid storm is a deadly increase in blood pressure and a spike in thyroxine that your body produces. What you describe are the side effects from Tapazole or carbimazole. I did not experience side effects from Tapazole. I was lucky. I just became resistant to it.

And yes, what I call poisoning is the overproduction of thyroxine, which caused all kinds of problems for me.

Hope his helps!

[Greekchick]

Check this link for thyroid storm :

healthline.com/health/thyro...

[Greekchick]

It is very rare - and my doctors did not want me to have RAI because you can get an immediate release of thyroxine after RAI andI was already overproducing - so they wanted The thyroid out.

[ling in reply to Greekchick]

Thank you very much Greekchick.

Your posts have been invaluable.

The ridiculous medical system where I am at, guarantees I never see doctors really trained in thyroid matters, including endos. As such, there really isn't anyone to turn to, and rather than endless sessions trying to convince doctors I am really ill and not just having panic attacks, I try to figure things out on my own before going back to see a doctor.

Thank you so much for your generosity in sharing your experience, and your kindness and patience.

I wish u well, and hope to continue reading your updates post surgery.

God bless you and give u strength in this new leg of your journey!

Ling

[Greekchick]

Dear Ling,

I am so glad that I was able to help you. I am sorry to hear that you are not getting the care you need. I hope you can find a good MD and get answers to some of the issues you face.

You should follow helvella’s posts. He/she has great info and has just posted an article that you would find interesting - I think it still shows up in the home feed.

Thank you for your kind wishes and prayers - they help! All the best to you - and sending you good thoughts for your health.