What's the best solution for Hyperthyroidism and TED?
Posted , 6 users are following.
Hi everyone,
I was recently diagnosed with Hyperthyroidism in early July. Before that, since around March, I noticed some changes in my eyes that has progressively gotten worse. My endocrinologist has prescribed me with methamizol which has helped my hyperthyroid symptoms and has brought my hormone levels back to normal. She recommends that I get the RAI treatment to cure my hyperthyroidism but after doing some research it seems like those with TED has gotten worse after the RAI. I reached out to my ophthalmologist and they also said that from being in teh clinic, they noticed that there is a trend in eyes getting worse for TED patients who gets RAI treatment and would recommend an alternative treatment. I've gotten a second opinion from another endocrinologist and he agrees, and recommends I do surgery to remove the thyroid instead. I do not want to get surgery but I definitely don't want my eyes to get worse. I feel like in this case surgery is the best way to go but was wondering if anyone else on here has gone through the same thing and would like to provide their experience or advice?
Thanks in advance!
0 likes, 26 replies
lynda08
Posted
jean34329 lynda08
Posted
Your eye clinic sounds good.
JeanMay I ask if you are pre or post menopausal?
lynda08 jean34329
Posted
linda187 lynda08
Posted
Yes, long term medication is definitely an option. I belong to another Board and one of the members has just had her sixth child. Many of us have been in remission for a long time on low dose meds. For myself, I found that adding supplements to my treatment plan along with the prescribed medication did wonders for me. That's because hyperthyroid patients lose a lot of vitamins, minerals and amino acids from their bodies when they are running hyper and these need to be replaced. I added L-Carnitine 3,000 mg after reading a research paper on the benefit of hyperthyroid patients taking this. And I got tested for Free carnitine and Total carnitine and i was deficient. I was also deficient in vitamin D so I added Vitamin D3 1,000 to 5,000 IU daily as well as Magnesium 200 mg daily and curcumin and Omege 3 for the inflammation. My eye symptoms were extreme dryness and redness. I used eye drops and recently found one produced in UK that is very good. As well, my ophthalmologist inserted collagen plugs into my tear ducts to keep more moisture in my eyes. Thyroid surgery will not get rid of the antibodies that cause autoimmune thyroid disease and many people do not feel as well or normal on levothyroxine which you have to take the rest of your life. Many patients who have more severe eye symptoms have reported improvement upon taking 200 mg of Selenium a day or eating 2 brazil nuts a day. As well, others have reported improvement in eye symptoms after soaking cotton pads in witch hazel and placing them over closed eyelids. Helps a lot with swelling. Others with more severe TED have had to have a course of steroid medication and/or ocular surgery but did well after this. The main thing is to get your disease in control and reduce your antibodies and this is best done with medication, careful monitoring, supplements and avoiding stress.
lynda08 linda187
Posted
jean34329 lynda08
Posted
WOW!
I agree.
I have Log QT syndrome, on warfarin so will have to check out the L Carnitine.
Jean.
jean34329 lynda08
Posted
It is too important.
hypnocool lynda08
Posted
lynda08 hypnocool
Posted
hypnocool lynda08
Posted
2. Start taking methimazole 10mg 3x/day.
3. Start taking propranolol 20mg 3x/day. Always check your pulse before taking propranolol and change the dosages.
To now at 5mg methimazole every other day. I also change a bit less fast food and bought non iodized salt in my kitchen. My doc wanted me to take Selenium pill but my T4/T3 kept thinking im hypo so i stopped it and just eat brazil nuts just for maintenance. I am working out now because I am not tired anymore like I used to. When i was so hyper, I felt so helpless and always tired. Now that my TSH is leveling I feel like a normal person. I dont get tired a lot anymore using the treadmill. That's how I ussually gauge if my heart rate goes up faster than normal then I would just go get blood test. I also noticed that if im hyper or off my levels I have less patience to others... too many factors...
jean34329 hypnocool
Posted
A few days after stopping the codeine the headache and hrobbing pains subsided considerably. However my eyes were still dry and I had concretions which were irritating the eyes and causing grittiness. The concretions were removed under the slit lamp at the hospital.
vicky81955 lynda08
Posted
I had intravenous prednisolone twice in hospital, then radiotherapy on the eye sockets. following that I continued with oral steroids for a further four months. all of that helped the eyes, but did not cure the disease. My consultant was concerned about the pressure which is too high can squeeze the optical nerve. So in February this year I had bi-lateral orbital decompression where basically more space is made in the eye socket for the inflammed tissue to spread and relive eye pressure. This has worked well and I am now waiting for lid surgery which should help with my 'staring' appearance.. I am now feeeling a lot better and should be allowed to drive again soon. ( I had double vision)
Right from the start my GP, endocrnologist and eye consultant said that I would not be offered RAI as I have TED. If my thyroid goes hyperactive again, they will try to stabilise it with a dose of carbimazole again or remove the thyroid completely.
Sorry I've gone on a bit . . my TED was at the 'severe' end I should mention.
jean34329 vicky81955
Posted
YOU HAVE NOT GONE on a bit. You have sent is a comprehensive valuable piece of very important information. I too had thyroid eye which , touch wood, has now cleared up.
A dr Sigested RAI for me, thankfully thanks to this Forum I earned that RaI was not appropriate, however you mention radiotherapy. Is that the same as RAI or another form of treatment? Why did you have the RAI iin the first place?
Hope you dont mind my asking. Jean
vicky81955 jean34329
Posted
The radiotherapy was the sort some cancer patients receive! so I never had RAI at all.
The treatment was very precise and for about 15 -20 seconds for each eye for 11 consecutive days. It was to try to remove some of the inflamed tissue behind the eyes. I had a mask made of plastic mesh which fitted over my head and was clamped to the table you lay on for the treatment -so you could not move at all. during that period
I had to take oral steroids to combat the effect of the radio therapy on my eye muscles. Not pleasant but didn't last long and seemed to stabilise the inflamed tissue.
Glad your TED has cleared up - how long did you suffer?
Vicky
jean34329 vicky81955
Posted
I had concretions which were removed under the slit lamp.
Have yo googled Sjogrens Syndrome. Did they do your anas, anti nuclear antibodies, ebv, have you been checked for Lupus/
lynda08 vicky81955
Posted
Lynda