Hello, my husband (39 years old) has been diagnosed with Graves’ disease in January 2018. His results are now very good and the antibodies have dropped significantly, in fact they are very low. He is on 12.5mg of PTU every other day. His endo however thinks that he can relapse very quickly (like within a week or so) which would put him at high risk of heart attack. We are not sure if to believe this claim about the possibility of such a rapid relapse.
He had a consultation with a surgeon this morning which was quite good but he is obviously worried about the risk of his voice changing and complications with the parathyroid glands.
We still want to investigate RAI as it seems less invasive however we are now expecting twins so I’m not sure how long the isolation period would be needed for.
I would be interested to hear about your experiences with either of the procedures and how was the recover process after both. Any info would be great.
Also, if you had a good experience with any surgeon in London, please send me a PM. Many thanks in advance.
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Kari55
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I believe that the best option is so stay on medication for as long as possible, as the other two options are final, and there's no going back, once you have lost your thyroid.
Graves is an auto immune disease and as such it's for life, it's in your blood, your DNA.
Graves anti bodies generally attack the thyroid, and it is because the thyroid is such a vital, major gland that the symptoms experienced can be said to be life threatening. The thyroid is the victim in all this, and not the cause. The cause is your immune system attacking your body.
There is usually some genetic predisposition to this auto immune disease, maybe thyroid issues, a generation or two away, and can be triggered by a sudden shock to the system, like a car accident or an unexpected death.
If you don't know of the Elaine Moore Foundation and website it is dedicated to all Graves patients and is all things Graves. Elaine Moore has Graves and was treated with RAI in the late 1990's and found no help or understanding of her on going health issues so wrote a book to help others who might also be struggling. She now is a leading researcher in Graves, well respected, and runs open forums, much like this amazing website. It is Stateside so medical protocol is slightly different but well worth dipping into as she covers diet, lifestyle choices, relaxation techniques and alternative treatments than that covered by mainstream NHS.
Of the two remaining options, surgery is more preferably - it is clean and concise.
Radioactive is simply taking a tablet or drinking a drink but it is a toxic substance that goes through the whole body. It is a quick fix, a 20 minute outpatient appointment and a discharge back out into primary care. It is the hospitals treatment of choice but it is not necessarily in your best interests. It burns out the thyroid in situ, rendering the patient hypothyroid but it is also taken up, in a lesser amount by other glands within the body.
Please do you research.
Living without a thyroid comes with it's own set of problems, especially when it isn't possible to access the full spectrum of thyroid hormones that the thyroid produces on the NHS.
I am with Graves Disease diagnosed 2003 - RAI 2005 - and am managing Graves, thyroid eye disease and hypothyroidism. I became very unwell some 5 years ago and I am now self medicating, buying my own thyroid hormone replacement and getting my life back.
Thank you! We have done a lot of research last year on autoimmune illness and my husband was following an autoimmune protocol by Amy Myers for some time and is still gluten and dairy free. Elaine Moore is amazing, I have used her forum a few times.
I’m glad to hear that you are getting your life back x
Your biggest question is whether or not surgery or RAI is better. There are people on this forum who have had both good and bad experiences with both. There isn't really a "right" answer in that sense, but there usually are better choices depending on the specifics of someone's health situation. While there is limited research that suggests younger men tend to do better with RAI than older women, your husband has Graves disease . In this case, RAI would generally NOT be recommended because there is a possibility of developing TED (Graves disease of the eyes). This is because one has Graves disease for life - and may always have the possibility of reactivating the disease at some point in time. I am also told by my endo that with Graves disease, there is a particularly increased risk of thyroid storm with RAI, a condition which leads to excessively high blood pressure with the possibility of stroke, high body temperature, and obviously, is very serious. (This can also happen with surgery, but much less likely than with RAI).
Different isolation periods for RAI have been reported here - some as short as a week, and others up to 3 weeks. This may be due to the differences in protocol in different countries. I am unsure what the recommended period is in the UK. Your endocrinologist should be able to answer this question for you. Further, there is no question that RAI is less invasive than surgery. If there is no goiter or nodules, it is often a reasonable solution. However, with RAI there is always the risk of permanent damage to the salivary glands and the development of dry eye syndrome, which also tends to be permanent as well and will need to be treated. These can lead to problems with your teeth and eyes down the road. It can take more than one treatment with RAI to kill off the thyroid - so you may have to go back twice and repeat the process all over again.
You have already listed the risks for surgery - damage to vocal cords and parathyroids. The risk for each of these increases with Graves from 2% overall to 4% overall. However, this is dependent to some extent on the surgeon - and that's why I mentioned to you in your other post that you need to know his error rate on these matters. My own surgeon had an error rate of 0.3% on 3,000 surgeries. I had no damage to either my vocal cords or parathyroids. With either surgery or RAI, it is difficult to find the right dose of replacement hormone. There are people on the forum like me who have done well with surgery, and others who have experienced damage to the vocal cords and parathryoids. There are others who have done well with RAI, and others who report serious effects.
After surgery or RAI, most people (80%) do fine with levothyroxine therapy. On this forum, we are the 20% that do not do well, and therefore, need other therapy to assist. Some use NDT, and some need supplementation with liothyronine because they have problems converting levothyroxine into the active form that your body needs. Also, there is no "one right formula" for what works with replacement therapy. Different people do well with different forms of replacement. With either surgery or RAI, the issues occur after both procedures. It is difficult to find the right dose of replacement hormone. It is often reported by those on the forum that the adjustment is harder with RAI than surgery, beacause it can take more than one dose of RAI to kill off the thyroid function. So your thyroid is still producing hormone. Even if one dose is successful, it will still produce some hormone, and so it is harder to get the right dose. This is usually not the case with a total thyroidectomy, as the gland is (usually) removed completely.
You asked about others' experiences. My own with the surgery itself was an excellent experience and I recovered relatively quickly from the physical aspects of the surgery (scar healing, etc). I had a talented and skilled surgeon and a great endo, and still continue to receive the best of care - in Canada. However, the period since the surgery has been very difficult with adjustment to meds and I am not done yet. Please remember that everyone has a different experience with these matters and your husband may do very well both before and after the surgery.
Let's take your other question:
His endo however thinks that he can relapse very quickly (like within a week or so) which would put him at high risk of heart attack.
Does your husband have AFib or any other pre-existing heart or cardiovascular condition that could lead to heart attack? Is there history of this in his family? If this were the case, then I would understand why your surgeon wants to go ahead. When I had my TT, my surgeons were concerned about thyroid storm (I mentioned this above) because I was no longer responding to the anti-thyroid medication. If this is not the case for your husband, I've not heard of this sense of urgency about surgery myself. This is a rare possibility, however, some physicians may be more concerned about it than others. But I don't know your husband's complete medical history. There are some people who have been on antithyroid medication for years - my endo has a patient who has been on it for 11.
I hope this has been helpful. I wish you both all the best, and particularly with the little ones on the way! Hopefully your husband's situation will be resolved soon and you can enjoy your two beautiful babies. Good luck to the both of you.
Thank you Greekchick, this is really helpful. The error rate of the surgeon we’ve seen this morning is less then 1% and he performs over 100 thyroid ops a year. I see you had a much more specific information from your surgeon.
My husband has already problems with dry eyes so I believe RAI would make it worse.
He doesn’t have pre-existing heart condition however last time his thyroid went off the doctors thought he was having a heart attack which luckily was a false alarm and it took them a while to figure out what causes his heart palpitations. He was basically very close to having thyroid storm. I guess it’s because of this, his endo is pushing him to have it removed or killed off.
Thank you for your best wishes! I think we will continue investigate options for now and wait for our babies. X
It sounds like your surgeon has the requisite experience and ability. That’s good news. What you report about the palpitations- now I understand your doctor’s concern.
If your husband is having dry eye problems, I would suggest a consultation with an ophthalmologist if you have not already done so. Anyone with Graves should have their eyes monitored regularly by an ophthalmologist if they are experiencing symptoms like these.
I have Graves, 4.5 years into diagnosis, euthyroid for the last four years with thyroid panel blood tests always in range, and consistently take my low maintenance carbimazole dose.
Despite this, earlier this year, after a several-month prolonged period of stress and anxiety in the course of care giving, I experienced a mini thyroid storm attack which felt like had it been more serious, would have precipitated a stroke.
With Graves, the danger is that thyroid hormones can spike any time, once lifestyle factors are not adequately managed, and trigger "an attack".
Physical activity and exercise. These count towards the amount of stress the body can take.
Hyperthyroidism is no doubt a volatile and potentially dangerous condition, which is why doctors urge destroying the thyroid. Don't be fooled by its lull/well periods.
It is leaning towards surgery owing to thyroid eye disease, but the fear of damage to the parathyroids etc, is ever present. And I do not know if it's possible to find a sufficiently experienced surgeon. Overall, I'm crazily trying to stay in status quo. Depressing : )
I've had both procedures as previously related to you. The surgery was essential as otherwise the future looked bleak and short for me. This type of surgery is nor undertaken lightly; it is much more dangerous than others as it is so close to blood vessels and nerves. Not recommended unless 100% necesary.
I volunteered for RAI as my 2 fights with goitres had scared me and inconvenienced me so greatly that I had no with for a reoccurrence from the residual thyroid tissues that the surgeon could not safely remove.
I have since discovered that RAI is not exactly recommended by others for who it has been a bit of a disaster in some ways. Perhaps I could have had several more years of normal health if I hadn't had RAI when those tissues reactivated and produced some genuine human thyroid or whether I would have developed a super-dooper-multinodular goitre that would have succeeded on the 3rd attempt to kill me, that I will now never know.
I did not have any complications such as Graves or Hashi so cannot expand on my personal experiences. All I can guarantee is that when your own thyroid gland is gone, you cannot rely on levothyroxine to ever give you good health.
The radiologist at the hospital seemed to believe that the dangers of RAI to others is exaggerated by some people but would recommend significant caution especially to youngsters and the unborn.
I’m sorry to hear that you had to have both done. Sounds like getting the hormone levels to a normal range is tricky. He is feeling well at the moment and it just feels wrong to get rid of his thyroid.
There is plenty of recent research supporting long term low dose anti thyroid meds. I’ve posted a few articles recently if you want to click on my name and look. If he’s stable and well on a low dose, with no other complications supporting removal, then I don’t see why he need change anything. I’ve been off and on Carbi since 2012, currently taking 5mg every 3 days with TRAb finally in remission. If my original Endo had had his way I would have had RAI or TT long ago, I’ve always refused them.
Brilliant article! Thank you. This is very promising new approach, unfortunately it is impossible to find an endo in the U.K. who would be open minded enough to keep patients on meds long term. It seems wrong to get rid of thyroid when he is feeling well.
But it’s patient’s choice, they can’t force you to do it if you don’t want to. Even my first Endo who strongly recommended RAI or surgery after I relapsed said it was my choice, and admitted when pressed that he had several patients on meds long term.
No one should force or rush your husband to do anything - thyroid disease usually moves very slowly and it takes them more effort to monitor you on anti thyroid drugs than on replacement. Many people are on long term anti thyroid medication and do well.
Hi Kari, I had RAI without any problems. I felt normal again within days of having it.
I didn't just get a 20 minute appointment then back to primary care as someone else has said happened. I had regular hospital appointments for 2 years, in between hospital appointments I had blood tests at Drs.
Yes Kari, all the overactive symptoms stopped in a couple of days. I started Levothyroxine approximately 3 months after RAI & have no problems with it.
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