Thank you; you are strong too; you have been through a lot!
No a lot of people do not understand this autoimmune Graves stuff and I have even encountered some people who had treatment and had an easier time of it than myself and do not understand; I have run into enough people though who years later after RAI are still struggling!
I am not saying though that is how it happens for everyone; I believe if doctors had caught this in me years ago, I may have been able to achieve remission on ATDs. Yet it was not meant to be.
I was changing dosages of my Methimazole by 2.5 mg and either way up or down I'd find myself going either too much toward hypothyroid or too much toward hyperthyroid. My current endocrinologist was not willing to get me regulated based on 2.5 mg dosages as he said if I was not getting balanced on going 5 mg up or down then I need to move on to RAI or TT.
It was quite a rollercoaster ride for me and probably not very good for my body.
I tried ATDs for 23 months and no balance. My doctor was very worried that my heart rate was still in the high 90s at times even on Methimazole and sometimes going into the 100s again and that up and down he said was not good. I was already in pretty bad shape back in Spring 2010 and I waited until September of 2010 to go on Methimazole thinking that I could attack this thing with natural means and my internist was willing to let me try. He said RAI right away after my radioactive iodine uptake and thyroid scan. I was the one who said let me try Methimazole. Three endocrinologists could not get me to balance/toward remission and my symptoms were all over the place. I basically had no choice and frankly back in 2010 I am surprised I did not have a storm before going on Methimazole. I have also been in the midst of taking care of my elderly mother the past 2 years where it also worsened my Graves symptoms even on Methimazole. She has had surgeries and falls and back damage and again is in rehab for her back and the stress I think took it's toll on my body as I'm the only caretaker here as family is all up north.
I was scared to death to have RAI yet I spoke to my husband's cousin who is a doctor who had it at 40; she is 60 now and no major weight gain, walks 5 miles a day, no aches and pains and looks great! I have another friend here had RAI 7 years ago after a horrible thyroid storm experience and she said she has never been the same; yet she looks great and in her mid 40s. The fact that I was never going to achieve remission on Methimazole and who was I kidding I realized I'd better do something as the Graves could be taking it's toll on my heart and rest of my body; even my husband's cousin who had RAI warned me. So I went for it May 2012. It was very easy and all the fear I had prior I found was not necessary. I had a very good post RAI experience; a little bit of hyperactivity the first month yet it subsided and then 3 months out I started feeling a cross between hyperthyroid and hypothyroid. That is when I knew I was going to crash to hypothyroid soon as I already was drug induced hypothyroid on 20 mg of Methimazole I was on for 3 months. At the time the doctor wanted me on 30 mg of Methimazole and I said no way as I know how sensitive my body is to medications and I was right. The endo even apologized that she made me “too hypothyroid” on 20 mg of Methimazole for 3 months; why I started trying to self dose as these doctors were impossible! Yet I realize now that I have to work with my doctor and to let them know what my plans are. Anyway, I crashed to hypothyroid about the 3rd week of August 2012 and it was miserable. I ached, could hardly walk, was so clumsy, stopped driving knowing that I was confused, could not think straight, gained 10 lbs in a very short period of time and just all the standard hypo symptoms yet seemed to me about 10x over! I was kind of mad at the endo and I made it clear to him as I told him to test me in 2 weeks instead of waiting the month and that just little bit longer put me over the edge. My TSH was 60. I almost had an accident in my house I was so clumsy as I hit my head. I'm probably one of the most coordinated people going as I used to rollerblade up until a couple years ago (I'm 53) and do fancy stuff and gymnastics many years ago. I was really irritable too and letting me go so severely hypothyroid irritated me more; so important to have very good communication and relationship with your doctor. Anyway, I was put on 75 mcg of Synthroid; no good; still feeling like I was down in the dungeon; then put on 100 mcg Synthroid; a bit more energy and then a real slump again; then my legs were hurting so much I could hardly walk as I felt like I was about 20 years older. So I said let me try Generic Synthroid; it could have been that getting adjusted to the thyroid hormone or moving up too quickly from one dosage to another could have created the extreme leg pain; I don't know and doctors had no answers for me! So my doctor and I came to a mutual agreement just about 2 months ago to put me on 125 mcg even though he said for my weight that I should go on 112 mcg; my blood test of almost one month ago showed my TSH just below “1” and my FT4 was just a little over the higher end of the range, like .10. My doctor said nothing and I have to call to get another blood test as I see him end of November. My endocrinologist most likely will release me to my internist as he told me once I'm looking somewhat stable, my internist will be able to take over. I got tested once a month with him on Methimazole and same with post RAI except this time around now I am going 2 months in between seeing him.
The good to me, I got off that Methimazole rollercoaster. No hope of remission; wanted to get on with my life as it was somewhat on hold being on that medication and never feeling right; the RAI is not scary as I thought it would be; I feel more calm and I sleep well as I have not had good sleep through this for almost the entire 2-1/2 years and I had problems prior to that also! My menstural cycle seems to have quit at 53 yet who knows maybe it will come back as my family goes through at 55 and my ob/gyn said that typically we follow what happens with our mothers; yet again that is not always true for everyone. My extreme mood swings have quieted as I am more even and calm. I don't find myself obsessing as much over this disease as I was told by a medical professional that Graves people do this as it is part of the disease itself. I think more clearly again too. I can see a light at the end of the tunnel where on Methimazole there wasn't any; Yet I see now my Graves was very far along and I may have wasted time on Methimazole yet I wanted to try. I did get to research an awful lot on Graves all through the 2+ years and talk to a lot of people and hear their experiences.
The bad is that I gained a lot of weight on Methimazole and then post RAI 10 extra pounds. Slowly I'm losing that 10 extra and still need to take off at least 15 yet I wish I could go for 20. We'll see. Plus the leg pain still off and on as we spoke about here which is very frustrating at times. Plus I also get tired more easily. Yet I've aged since this started and seeming that I may have gone through changes and this disease can take it's toll on one's body and healing takes time as I am seeing. So maybe in 6 more months there may be even more improvement for me; at least I can hope!
The wait to go hypothyroid was not fun.
The ugly was going hypothyroid and dealing with doctors and the weight gain. I've learned somewhat to live with the pain. I've dealt with pain of different sorts for a very long time now off and on for a few years so I kind of do not know what normal is yet I won't take pain medication; when I was taking so much motrin when I had severe pelvic pain with my ovarian cyst 2008-2009 my heart was racing like crazy all the time; I found out from the first endo it was the motrin doing that and he said Tylenol only; in fact my friend who had RAI 7 years ago here still only uses Tylenol as some medications still make her heart race believe it or not. I guess if it got bad I would have to take stronger stuff yet hopefully that won't happen. The fact that I was worried about my thyroid eye disease which mine was diagnosed as moderate and I was afraid with RAI that it would worsen in time. My thyroid eye doctor who does specialize in this Graves opthamology and does many eye operations for such says that he needs to monitor me from 3-5 years post RAI as antibodies will still be active as he told me. I never kept weight on me as such in my entire life as I was always very active and ate very healthy and I still have in the last 2-1/2 years yet it does not impact my weight to go down yet I still have hope as I'm slowly losing. My biggest fear is that my endocrinologist will lower my Generic Synthroid dosage and then I'll feel more hypothyroid again and he has this thing that over 50s should have a certain TSH reading of 2-3 instead of what two other doctors told me, one an endocrinologist to keep it at 1 no matter what age. Plus I may want to try some Armour yet I also go with reservation with that because I know some people with that added T3 can have heart palps and that is the last thing I want again! I read some medical journal there is a timed released T3 available in Europe yet nothing of such that would mimic what the human body would actually need has been developed her in the US. I already discussed this with my endocrinologist who is also a professor at the Medical University and up on the latest and greatest and he said they do things differently over there!
I found for myself it is good to talk and share with others; this is the last thing I would be doing back 2-1/2 years ago. Yet I found writing helps and people have helped me and I want to be able to help people like you with my experiences if I can or if there is anything of worth that I share here. I am glad it helps you as it is not easy and I sympathize with what you are going through; it got easier for me and I think for me if I had it to do over, I would have done RAI right away and I'd be much further along and probably would not have gained as much! Yet it worked out that way for a reason so now I just keep moving forward with hopes that things will keep getting better; there are improvements in myself and I never have to have those horrible heart palps and afib again and my legs were so rubbery I thought many times I was going to fall down the stairs and my hands shaked so much I could no longer write! I look at it so what if I'm heavier at least I feel I am healthier now! You'll get there! You've already reached out and that is a start and when you have the right medical professionals working with you it does make a big difference. Even though my endo and I sometimes butt heads, I am very grateful for him getting me through things as he is a very knowledgeable and intelligent man just that I had to work at getting through to him better and it has worked out pretty well; sometimes with this disease there is not perfection yet we can get better! Hang in there better days will come!