With Graves' it is very important his TSH is kept under control. His doctors seem to be sticking needles in him rather than carrying out active treatment. His hormone is poorly controlled. They should consider 'block and replace' - sufficient carbimazole to suppress the thyroid along with levothyroxine. If this is unsuccessful then he might need a thyroidectomy, he should take advice on this.
I'm so glad he is refusing to go gluten free. I don't know of any good evidence that it helps all but a small proportion of patients with Hashimoto's let alone Graves' patients. Hippies I knew always ate gluten!
Sorry Jim but I really can’t agree with you on that.
I’ve got Graves that’s in remission and I went GF as an experiment after reading that Hashimoto’s patients - and patients with other autoimmune conditions had seen good results after doing that and I have watched my thyroid antibodies reduce steadily in the time I’ve been doing it. They are now down to almost nothing. My CRP has reduced since I went GF too. I’ve also seen GF recommended for anyone with an autoimmune condition and I’ve got several as well as Graves.
Nothing on earth would make me go back to eating gluten again. I eat a well balanced healthy diet, I just haven’t eaten wheat products / flour or anything contang wheat for five years.
My Graves was treated with block and replace and I think B&R is much simpler than titrating with carbimazole alone, but that’s just my own opinion.
My endo explained all the methods of treating hyperactive thyroids then said that the hospital treated it ‘the quick way’ block and replace, and that my treatment would take a year which it did, my treatment finished exactly a year from when I was first diagnosed.
Although I know of people who have had their thyroids removed / ablated with radioactive iodine I would do everything I could to hang on to my thyroid, especially at his age and once it’s gone, it’s gone. If his hospital won’t do B&R ask your GP to refer you to somewhere that treats with B&R
I know there are people who are fine without a thyroid, in fact a relative had hers removed after thyroid cancer in her early twenties and is incredibly fit but there are also a lot of people who are not happy with their results.
I would have preferred vote blood tests done by Medichecks or Blue Horizon, I use BH Thyroid 11 home fingerprick test. It does full thyroid checks plus antibodies, vitamin D and B12, ferritin and folates. Your son needs all four to be well up within their ranges to help his thyroid. GF worked to reduce my antibodies and I’m definitely no hippy.
I joined Coeliac UK for help in going GF. I found it easy. You can get GF beer, chocolate, crisps etc the Coeliac UK handbook gives lists and lists of foods that are GF - I imagine all the sorts of things a 19 year old might like the munch on. Thing is, your uve got to do it totally or not bother, no such thing as being ‘almost GF’.
I agree with RFU - if he smokes he ought to give it up it’s not at all good for Graves.
Fruitandnutcase, were you on carbimazole? Coeliac is often missed with Graves' as they both cause weight loss. Carbimazole and levothyroxine would both be less effective due to malabsorption.
There is some evidence that gluten free may help non-coeliac patients who have elevated IgA tissue transglutaminase antibodies. This represents a small pecentage of thyroid patients which is why I wouldn't recommend gluten free unless normal therapy has been tried and failed.
it's good that block and replace has worked for you as we hear stories of it not working, perhaps because of the wrong doses or just reporting bias due to successfully treated patients not being on the forum.
I did a finger prick blood test before and after I started, not expecting anything much and I wasn’t going to carry on if it didn’t work. I retested every three or four months and my antibodies just kept going down.
If his Graves doesn’t improve then from what I’ve read I’d go for a thyroidectomy rather than radioactive iodine. The reason I want to stick with B&R should I relapse is that a) I felt very well on it and b) from what I’ve seen on here it’s not always easy to get the correct amount of levo to make you feel good.
I think I told you that my sister in law had a total thyroidectomy when she was in her twenties and she has always kept well, she’s really slim and very active - rock climbing, hill walking, mountain biking, sailing - went to college, got a degree, taught full timewhile bringimg up two kids so there is a good life even if his thyroid has to go - but I think I’d try to hang on to it as long as I could.
Graves' antibodies die down after year or two but it is very important to treat the effects of Graves' in the meantime especially if there is any impact on the eyes. The eye muscles have TSH receptors which are stimulted by TRAB (TSH receptor antibodies). Hence TSH should not be allowed to go high as this will add to the harmful effects of TRAB, normal levels of TSH are OK.
sorry I'm interested you said graves antibodies die down after year or two I was diagnosed Graves' disease 2008 why are my antibodies still elevated even 2013 ? 2014 ? Thanks ....my TSH level was 0.01
I went to a support group presentation about a year ago on the subject of thyroid eye disease. The general approach is to make sure the condition is managed from an early stage and it should eventually settle down. Antibody levels fall in most patients, less so if they have radio iodine treatment. Every patient is different so some will do better than others. It's only high TSH levels that might aggravate thyroid eye disease, I'm not sure this is experimentally confirmed but it makes sense not to let TSH go high just in case. I'm not sure 'high' has been defined in this case but I get the impression that you don't let it go above normal levels.
No but the talk was about this and Graves' and it was mentioned that antibodies usually decline in time. I guess you are a bit unlucky in that your antibodies have not fallen.
i was looking my health record saw my blood test results ( 2013-2014) about my antibodies and my antibodies was high I didn't know anything about it endocrinologist never mentioned before and they never check again ....thanks for reply ...
If he does not like the idea of compromise he should be well advised that whilst having a thyroid he has some choices, removing your thyroid will remove some of those choices.
Diet and correct medication could be life changing right now.
Just a comment, I have no evidence but the impression I get from forum comments is that radioactive iodine often does not turn out good. If the thyroid had to be removed I would choose surgery.
Keep that thyroid! I was diagnosed Graves with nodules 9/2015 and my TSH was 0.01 also. I had very similar results as your son. I was shaky, intolerant to heat, out of breath while talking and losing hair. I was put on methimazole 10mg and was not checked by Endo for 6 months. I felt terrible/worse on methimazole! That stuff was evil for me. I retested with a TSH of 11.9 and told to wait until the “Graves symptoms returned”. They never did. My TSH was checked a year later and was 55.2 and my TPO antibodies were 1,378, normal is less than 60. I was diagnosed with Hashimoto thyroiditis with nodules. I was barely functioning. I am now just starting to feel like I have a life. I’m gluten, dairy and soy free and my vitamins/minerals are at optimum levels now. My D3 was at 18 which was awful. I am holding on to my thyroid for dear life as long as I can. I am too skinny even though I’m hypo Hashi, so that didn’t change and my heart rate is always between 90 and 125 unless I’m resting. Blood pressure is normal now. I’m on 75mcg of levothyroxine and taking it one day at a time. Personally aside from shaking the hyper symptoms were a bit easier to tolerate. Once that thyroid is gone he will go hypo. Tell him to baby his butterfly and get his vitamin and mineral in optimal levels. Transdermal magnesium spray has been a life changer for me too. Praying for your son and you!!
They should run a TSI (Thyroid stimulating immunoglobulin) the presence of those will confirm Graves’ disease. TPO antibodies are Thyroid peroxidase antibodies. They are necessary to confirm a diagnosis of Hashimoto disease. Search them on this forum and the Graves forum and also online. I wish they had checked mine before they prescribed any medication for Graves’ disease. I hope this helps. Prayers!
At 19, I think he should attempt to hang onto his thyroid for as long as possible. RAI is irreversible, but there is plenty of time for new treatments for an overactive thyroid to come along during his lifetime. In the U.K., although RAI may be mentioned from the first endo appointment, it is not usually seriously considered until the patient has had at least one, often two, attempts to achieve remission via anti-thyroid treatment (usually Carbimazole) .
However, living with untreated hyperthyroidism is not an option at any age.If he has Graves’, it can’t be cured, and achieving remission will require a year to eighteen months of treatment, with tablets he must take every day, and blood tests and hospital appointments every month to six weeks. Did he have the patience and self-discipline for this ? (ie, has he been taking his medication ?). If he will take medication every day, and provided thyroid levels can be reliably controlled with a low level of anti-thyroids, he could ask to remain on this. However, his current thyroid levels seem to be very high, as is the dose of 60mg Carbimazole.
Wow I'm really shocked your son thyroid levels was really high any symptoms? hand tremor? Sweating ? I was diagnosed Graves' disease 2008
I don't understand Graves' disease and his TSH level was very high !!
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