[beach45]

#1058950

I love this site and the advice from the facilitators as I’ve been reading about people’s Graves experiences and questions and comments since August 2010 when I was first diagnosed with Graves.

I’m on the antithyroid Methimazole for 20 months now and had gone hypothyroid once, back toward hyperthyroid, up again toward hypothyroid and now going back hyperthyroid. It’s been too much of a rollercoaster ride of weight gain, sleep problems, mood changes between depression and anxiety. I have had 3 endocrinologists so far treat me; one left my state (the one I loved) and the original endocrinologist who I left for the one who left me would not take me back (probably because I rejected him); and now I have a new endocrinologist who only goes by “lab values” not symptoms. He decreased me from 10 mg of Methimazole per day Feb 1, 2012 to 5 mg per day after going hypo again and now I’m going hyper as per results from my Internists blood work recently and I’m on edge and not sleeping since March 26th. I told him why not decrease me to 7.5 mg yet he says he only goes by 5 mg dosages increases and decreases. I am at the point that this medication is not working, no one will test my antibodies and I’m at the breaking point where I just want the RAI and build myself up on Synthroid and taking extra good care of myself as I do anyway. I also have moderate TED yet my thyroid eye doctor said go ahead and have the RAI and that my endocrinologist would know what to do (which could mean steroids to protect my eyes I am guessing). Yet I’m in my 50s and I really do not want surgery nor do any of the doctors suggest this for me and bascially decline that thought. Do people with moderate TED have RAI with protecting their eyes with a few weeks dosage of an oral steroid and do okay? All I hear on other Graves forums outside of here horror stories about RAI and people who did not even know they had TED having major eye problems. This new endo said if I had the RAI he would test me once a month until my levels were more evened out; which of course could take a long while. I’ve researched so much about this disease and talk to many health care professionals, regular MDs and holistic and read up on it a lot and listened here and other places and talked with live people and I’m at the point where I need to make a change and hoping that RAI would help even me out as MMI is not seeming to do the trick! Or that possibly I just have not found an endo who will really work with me yet I hate this drug as I got so fat on it and even when I go toward hyperthyroid I am not losing 1 lb despite very strict diet and exercise. Plus I have a new issue the sleep; I could increase my MMI yet I did that last year when going hyper again and my doctor yelled at me not to do that. I know if I did, I’d sleep again. I appreciate your advice on this as I’m feeling I’m hitting a roadblock and want somewhat of a life back as the quality has been down in the last 20 months!…thanks

[Bobbi]

#1171152

Our doctors don’t test antibody levels because, currently, testing those levels does not produce any type of result that allows them to make more educated treatment decisions. Testing the blood for thyroid hormone levels and TSH levels is much more helpful in letting the doctor know what is going on. If testing antibody levels made any type of difference in treatment options it would be done all the time, no matter what the expense.

Any endocrinologist worth the money you pay them, is going to look at blood work to determine whether your treatment levels are appropriate or not. How we feel is not a completely valid indication of whether our levels are off. Before you developed Graves, there were periods of time when you felt tired, or were unable to sleep, or got constipated, or the opposite (cannot spell it:D). Everyone has periods like that. And they probably don’t have wonky thyroids. Conversely, just because you are feeling those symptoms does not mean your thyroid levels are necessarily “off.” They might be. They might be just fine, too. So, those subjective symptoms are not what your doctor will look at. A good doctor will check for you, will order blood tests. But they won’t raise or lower your meds based on anything but numbers.

There are other medicines that you can probably take to help with sleep issues if your thyroid levels are within the normal zone. Going without sleep is the pits. But it isn’t a good idea to tinker with your thyroid meds just to try to get to sleep. Talk to one of your doctors about the problem, and see if you can get an Rx for one of the current sleep meds that work really well.

[beach45]

#1171153

Thank you and that makes sense. I have been trying some natural methods for sleeping and will go to prescription if I need to.

I also saw patterns on MMI that when I go toward hyperthyroid I stop sleeping. My levels are just about over into the hyper range again (my internist just tested me and my T4 and Free T3 are just on the border and my TSH went from 5 down to 0.140 in 6 weeks). Sept 2011 as my levels started going back toward hyper, again I developed insomnia. Yet I have no clue how this works as I did not lose any weight nor is my pulse rate up yet the sleep is the first thing I notice that changes. As soon as I go back toward hypo, I’m sleeping too much again and am fogged.

I had about a 75% RAI uptake back in August 2010 and my heart rate was 120 to 130 bpm resting and I was a mess; shaking, not sleeping right, fast pulse, feeling wired, not feeling like a normal person and kind of psychotic, tremors, and lost weight fast without trying. All the classic hyper symptoms of course. I opted against RAI and now wish I had taken it and was on my way to somewhat normalcy even with the moderate TED. Now 20 months later and up and down it’s seems to have taken it’s toll on my body.

I know even post RAI it takes a while to even out yet I feel from things I read and hear I may be able to become better balanced in time. I know that this disease is not easy to deal with and that sleep patterns can change. I just know with myself I see patterns of when I go too much one way or another and I imagine this can happen post RAI too.

I have testing soon with my endocrinologist and he will see how my levels went to extreme just on a 5 mg MMI drop (plus he tests Free T4 too!). He is not willing to change me less than 5 mg as an increase or decrease of MMI so I’m at the point where I just need to do something to hopefully get on with my life. I’m not one either to take too many medications as I’m ultrasensitive, even times to supplements so it’s not easy. Plus I have other issues like with past addictions and my internist stays away from certain things for me as I’m sober 7 years. Quit smoking too 9 years ago. I’m really not fearful of RAI it’s just my moderate TED which the thyroid eye doctor said it’s not active so should not be a problem with RAI as I hope that he is right!

Thank you again for your input as it all makes a lot of sense and why the doctors don’t go by symptoms. I know there are many who use sleep aids and I also was considered “slightly hyperthyroid” for years yet no doctor did further testing and I had disturbed sleep off and on for years yet only when I went toward hypo did I get the best sleep!
This is a great site!

[Kimberly]

#1171154

Hello – On the eye issues, The latest guidance on RAI from the American Association of Clinical Endocrinologists and the American Thyroid Association is based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). For patients with no risk factors and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. For patients with mild and active eye involvement, RAI is considered an “acceptable” therapy, although the guidance recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

On a personal note, my endo has no problem with splitting doses of Methimazole. In fact, for most of my Graves’ journey, I’ve actually alternated different doses every other day! My system is super sensitive, so a change from 10 mg to 5 mg or vice versa would definitely result in a huge swing in my levels.

Bottom line, all three options have pros and cons, so you definitely want to do your own research and make an informed decision.

Take care!
Kimberly

[beach45]

#1171155

Thank you for that information as I went and found guidelines and printed them out to discuss mid April with my endocrinologist.

It is really great when an endocrinologist works with the patient with the MMI. Mine does not believe in the 2.5 mg dosing up and down. Since it is only my 4th visit with him coming up, I need to convey to him how sensitive I am to medication. I know if he increased me back up to 10 mg from 5 mg of MMI I will start to go drug induced hypothyroid in 6 weeks. The endocrinologist I like who left my area was amazed at how fast I went hypothyroid back in Winter of 2011. I’ve been up and down a lot; the funny thing with all this though I don’t lose the weight even with strict diet and exercise yet I get all other hyperthyroid symptoms! I won’t dose myself though by symptoms because I know now that can really mess up how the lab values come out and I don’t want to be dishonest with my doctor. At least through all this my internist is starting to see how sensitive I am to medication and that he is seeing where my levels need to be at for me to function pretty normally. I have an excel spreadsheet of all my MMI dosages, dates, lab results including Free T3, Free T4, TSH, LDL, the antibodies and physical changes back when I started all this in September 2010 to now March 2012. My newer endo did comment he never saw such fluctuations. Well to me it is not one size fits all why I wanted to only decrease by 2.5 mg because I know my hyper symptoms would come back. He’ll see for himself mid April from blood testing I am getting tomorrow yet he said he would increase me again if necessary which will be 5 mg as he doesn’t believe in 2.5 increments and then if by end of year I’m not in remission, then I go to RAI. He kind of laughed at me initially November 2011 when I was a new patient of his because I asked for RAI because I was tired of the rollercoaster ride on MMI.
He said not many people ask for RAI!

Thank you both very much as you have been very helpful and informative!

[Author]

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