[Naisly]

#1175002

Quote:

Remember to always talk to your doctor, and educate yourself.

Your so right Kimberly, this is why I said this.

WWWI2

Quote:

Naisley – When you say “ have to say that I have been following this thread and sort of surprised that the obvious reasons for muscle aches and pains have not been mentioned. I will touch base on a few thoughts, and please keep in mind I’m not a doctor.” That makes me crazy.

This wasn’t directed at you. I Was hoping someone who was an older forum member could talk about their experience with this, which, surprised me because no one has spoken up. So I thought to share some thoughts to Help.

You have not shared your lab results, so I have no idea whether or not your hypo/hyper. I’m going on your symptoms. And why I brought up FT3 can cause muscle/joint pain if it is too high or too low. I’ve had – 2 GP’s, 1 endo, 1 internist, and all acknowledged it and said it was a symptom. And as your learning, I assume you have noticed not all doctors know enough about Graves, not even endo’s

I do not take CoQ10. This was only a suggestion to try help ease your suffering and again, trying to Help.

This is the exact reason I do not like to make posts.

MaryI
Thank you so sharing your experience.

[beach45]

#1175003

WWW12,

I hear your frustration as I’ve been there throughout this journey; problem is with this thyroid business it is not a one size fits all and I find some of these doctors approach it as such; I have talked with many who did not have the muscle/joint pain that I did along the way in my journey nor the issues with the weight which I have very good diet and exercise habits yet cannot lose one pound and doctors have not answers for that either. The only thing that helped me was my excel spreadsheet which I have all my dosage changes on Methimazole (on it for about 23 months) and then post RAI on thyroid hormone (T4, Synthroid and Generic Synthroid), and all my blood work results and the physical changes; my internist started to realize that when my FT3 and TSH were at certain numbers and not just within range, yet what was appropriate for me, I started feeling better. Any drastic changes in Methimazole or recently with the T4 medication post RAI, I’ve had severe muscle pain in my legs and in my joints. I also had joint pain issues in my fingers and hands. From my experience, I unfortunately cannot totally rely on my doctors realizing that most of my symptoms and issues that I am now having are stemming from my thyroid not being totally right for me; endocrinologists focus predominantly on diabetes; if they do not have a strong background in thyroid and post RAI or TT treatment, I move on. I had a wonderful female endocrinologist by me 6 months who listened and worked with me and I am so sorry she left my area as she would have seen me through my Graves journey in a more understanding fashion; this disease strikes mostly women too if you look at statistics. From my experiences, more research needs to be done and the effects. Plus for me, I do not totally believe my body is going to function the same as it did pre-RAI even if I am starting to feel better as to me there is nothing like having your own natural thyroid. So I had a miserable time on Methimazole and horrible leg pain and joint pain in other areas of my body and I could hardly walk post RAI for a few weeks starting on Synthroid; I switched to Generic Synthroid and that horrible pain went away yet I still stiffen up a lot and I have to move more plus I realize too that some of this has to do with levels and weight gain. Yet I keep searching for that perfect doctor and it does not necessarily have to be an endocrinologist. I have done so much research on this disease for 2-1/2 years now, talking with many doctors, and reading many books on thyroid and Graves disease and reading reliable medical journals online and I have been commended by a couple of doctors on how well educated I am on this disease and one who says I read too much because some doctors do not want you to appear that you may know more; it’s truly been a learning experience for myself and I am slowly getting there yet I had some miserable times and pain and frustration and I am starting to see a light at the end of this tunnel. When you find the right doctor and find out what is the right dosage and treatment for you, you will do well too. Plus remember too that if we have one autoimmune disease we can be more prone to develop another autoimmune disease, like two endocrinologists of mine told me and my recent one said too some people with Graves post RAI develop diabetes. So not to bring out negative points as I know people who had gone into remission on Methimazole or had RAI and years later never developed any other autoimmune disease and all symptoms they had getting to where they needed to be, went away.

Plus myself going into menopause is not helping possibly with the pain issue and we are all so different as I believe the severity of the disease, how long a person had the disease (and I believe mine was undetected for many years as per doctors telling me off and on I was “slightly hyperthyroid”) and the age of the person who develops this disease, are all factors in how severe or not symptoms will be.

Unfortunately I found I had to be my own health care advocate with this Graves journey. I listened to those who had no problems with pain or struggles with weight gain yet I do not fit the perfect mold as I have possibly more problems than others. Yet I keep persisting with my doctors with my research and I even bring medical journal articles that I know that they will not dismiss to back myself up along with my little excel spreadsheet. And if I find I am not having success, I move on and will keep doing that until I find the right fit; no one should settle for 50-75% as I already spoke to my current endocrinologist about this as I want to feel the best I can moving forward without taking other medications to mask “symptoms” and get to the root cause. I don’t think any doctors would settle if they had this disease and I hope and pray in time you find someone who will really work with you! Like my friend here who had RAI 7 years ago and had a horrible thyroid storm before RAI where doctors took over a week to figure out it was thyroid related, was prescribed antidepressants and antianxiety medication for “symptoms” and when they found out that they did not work for her, finally a doctor figured out that it was her thyroid levels that were causing problems. I know it is not easy and I’ve learned to go up against my doctors assertively, yet politely, to get what I need because it is your body and your life and you should get whatever testing and treatments that you need to get to the point where you feel much better. I wish you best of luck and if you ever want to email me here, please do that. I had a miserable time and it is slowly getting better for me so yes there is a light at the end of this tunnel (at least for me almost 2-1/2 years now) yet when you are in it, it is most frustrating and depressing and can sometimes feel debilitating….I hope you find stability and answers soon!

[WWWI2]

#1175004

Beach,

I’m new to Grave’s being diagnosed in August (although it had been going on for some time). My frustration is that, I started getting sick in 2008, with my first autoimmune disease. I had horrible gut pain that wouldn’t go away and was initially misdiagnosed and lost my gallbladder. When it was finally determined what it was, it took 2 years before it got under control and the issues I’m running into now with doctors mirrors that experience. All the while being told I was a “rare” case and as a result getting virtually no help from doctors. We tried all the steroids, etc but it turns out, there really is no effective treatment for all, and so I simply suffered for two years until it went into remission

Just prior to 2010, when I went into remission, I became aware I was also having other digestive problems, that had been trumped by the other condition, but whenit went into remission, they surfaced. And although my Gastroenterologist said it wasn’t possible, after doing my own research and begging her to test me, it turns out I was spot on, I was diagnosed with Celiacs.

In 2010, I started to withdraw from a drug that I was unaware would be a problem to get off of and have spent the last two years getting off that drug, all the while being told it was me, I was a rare one, and ultimately I’ve had to figure this one out on my own once again. so for another 2 years I have been very very slowly titrating off this medication with all the pain nd distress it involved. Again, with virtually no support from the medical profession, who got me into this mess in the first place.

In July 2012, I had a ruptured appendix. And here I am again, in August 2012 diagnosed with yet another new disease, and based on my experience so far, I’m in the same boat as the previous situations. I have lost my patience, I have lost my tolerance for doctors who either don’t know and won’t admit they don’t know or that they don’t want to be inconvenienced.

Sadly I believe this is all as a result of taking a medication that I should never taken. Tegretol, an anticonvulsant, has been implicated in triggering Lymphocitic Colitis, my first autoimmune disease. Once one has an autoimmune disease, their chances of subsequent autoimmune diseases increases significantly. And in my case that would now include Celiacs disease, and now grave’s disease. All because in my ignorance and youth i went to see a doctor about a problem that she misdiagnosed.

I’ve simply had it. Prior to 2008 I was healthy as a horse. Now I just get sicker and sicker. The idea of having to again go through this same BS I’ve been dealing with for the last several years, with doctors who try to cover their ass, do the most minimal required, out and out lie because they don’t know what they are doing but refuse to admit it, where their egos override the care they are providing. I”VE HAD IT. I can’t do this again. I can’t deal with “just have patience, things will get better in time, this too shall pass, it is what it is”. I honest to god, have no idea how to get through this yet another time. If one more doctor does stupid ****, I’m not sure I can be responsible for how I respond. I’m SO over this, I can’t stand it.

[beach45]

#1175005

WWW12,

I hear what you are saying as I had my share of run around and issues with doctors my entire life. Two times in my very younger years I could have died due to doctor’s not figuring things out properly.

I had signs of Graves/hyper for years and with a TSH of almost 0 back in 2007 where I was having miserable IBS symptoms and other problems and yet T4 was fine and I had no clue about thyroid back then or what symptoms were as I just did not search things on healthcare issues back then as I did since I was diagnosed with Graves in 2010.

Plus I had a miserable time with pre and post Ovarian surgery to remove the left ovary and cyst which they thought at the time was cancerous yet thank God it was not; and the CT scan with the iodine dye done is most probably what put me over the edge as I read by two doctors that can (the iodine) cause the hyperthyroid condition to come out which it did with me! I know of two other people similar. I’ve gone along for years having faith in doctors and with every treatment or medicine I take more problems occurred! So I hear your frustrations!

I won’t go into more. You have been through a lot and I understand where you are coming from.

I agree a lot of doctors, at least ones I have encountered, either don’t know and act like you the patient don’t know what they are talking about (our own bodies) or they don’t want to be inconvenienced.

I’m very much against medications or treatments and also too many tests like X-rays or scans, etc. I believe less is better if possible. I have a holistic nurse practitioner I deal with from where I came from who taught me this and she also works with traditional medicine too! I only had my ovary out because the cyst was growing and huge and I was in extreme pain for almost 1-1-2 years as I was putting off surgery. My ob/gyn wants me to have the right one out with another cyst growing yet no way unless it starts to pain me like the left one did. The less I do with doctors, the better off I am finding out! It is sad because there are many good doctors out there as people tell me if you can find them! We just cannot lose faith! Many people have good experiences; I’m waiting for myself!

I was told with my heart racing for a very long time it was hormonal. If I had not pushed about the fact something was very wrong I probably would have had a thyroid storm and could have had a heart attack. I was headed that way as I was in bad shape back in 2010.

Plus when women’s hormones are changing getting closer to the change of life, we can become more prone to develop Graves; plus I am told by certain doctors being that the thyroid and ovaries are part of the endocrine system, there is a connection. Some say not though! Sure some of them lie; I see it all the time; and they want to make me look like I’m crazy or just take this medication and mask the real problem; I shove the prescription back at them!

Maybe a “DO” or a Integrative/Naturopathic type of MD would be helpful for you if you have not already pursued in addition to your regular MD? I know for me the latter unfortunately is out of pocket not covered by insurance. I have not gone through what you have yet I’ve had a share of miserable health care experiences and frustrations and I hear what you are saying! Yet for me I keep searching as there are good doctors out there who really care; it sometimes takes time to find. Plus maybe there are others in your area who have thyroid disorder who can give a doctor referral? I hear the same things too from people; or people who expect that now I should be feeling much better and I do not! Many do not understand autoimmune; heck a lot of doctors don’t and there aren’t any cures as we know there are about 80 different autoimmune diseases! I also sought out therapy when I was in a really bad way which helped me a lot. Hopefully you will in time find the doctor and support you need as I hope this site is also helping you! It has gotten better for me and I was losing hope; For me, I’ve also learned to communicate better with my doctors to get my needs better addressed…. Good luck I know it is not easy!

[beach45]

#1175006

I want to add though that medications and treatments do save people’s lives and just because I prefer to avoid such does not mean that it is bad. If I had not gone on antithyroid medication or had RAI I most likely would have stormed and damaged my heart or may not be here and I have family members who would not be with me if it were not for medicine. So didn’t want to give out the wrong message…beach

[WWWI2]

#1175007

Beach,

You have certainly had your share. I’m so sorry. I guess I shouldn’t be complaining as if I’m the only one with problems lol. I really wish things were different for you and I appreciate the reminder.

On my first go round with the gut stuff, I was told to go to a naturalpath doctor who specialized in digestive problems. Sadly the end result was a lot of money out and no help except for a lot of gibberish that ended up with him saying, “yes i can help you (with suppliments that would have exaserbated my situtation) but just know that you will probably feel worse for a while, before you feel better” all the while collecting money from me. So I passed.

The hardest part of all of this is that until you’ve been down the road long enough, you don’t know what is and isn’t acceptable to self treat. For example, looking back to the drop from 20 mg Methimazol to 10 mg, and the subsequent problems, it might not have been unreasonable for my doctor to say, that since the dose drop was too significant and the result was severe, it may not be a bad idea to bring you back up to 20 mg for a week or perhaps for the next couple weeks take 20 mg every other day.

The odds are I would have not have had to wait several weeks for some relief. But instead, it took him more than a week just to call me back, or rather for his assistant to call me back and tell me, yes you need to be on 15 mg, not 10 (and STILL he won’t admit he put me to the 10 mg in the first place). When the pain still hadn’t resolved he sent me to the primary care and now I’m on narcotics.

If I were further along, I might have taken it into my own hands and played with the dose, but this is a new drug for me and this doctor seems fairly adamant that I follow his instructions. Besides I AM NOT A DOCTOR!

The pain is still there but I can see that as time passes it eases some, so the meds may be kicking in, but this has gone on for several weeks. Is that really necessary?!? I’m counting on him to help me through this and he’s not. He probably could have saved me a bunch of unnecessary pain if he’d just taken the very small amount of time that was required. I guess that’s too much to ask. On to Endo #2…

[beach45]

#1175008

WWW12,

It is good to talk about this; thanks. I always thought I was and known to be a tough person yet this Graves thing really has beaten my butt; yet I still am determined not to let it! We have problems yet to discuss and never minimize anyone’s problems because we do not walk in your shoes. I have learned to accept stuff yet it has not been easy and I enjoy talking with people such as yourself and if I can help anyone…

I hear what you are saying about the naturopathic doctor. They do tend to want to give out a lot of supplements or recommend and problem is like with Graves to be very careful or else it could actually end up worse. One acupuncture doctor wanted to give me supplements that are supposed to be used for “hypothyroid” only and thank God I had a very good internist who recognized that taking them that it would have accelerated my already hyperthyroid condition at that time. Yet there are some good holistic practitioners out there.

Some say this autoimmune all stems from the gut.

I learned a hard lesson trying to change my dosage of Methimazole on my own; never again will I self dose. My internist is reasonable and if I asked to try something different like with my thyroid hormone he would let me do a trial yet he does not tolerate my changing dosages based on symptoms. I found that taking baby steps with changing methimazole dosage was better for me as far as symptoms went; same now with thyroid hormone Synthroid/Generic (been on both). I’m starting to feel a bit more balanced on 125 mcg Generic Synthroid as the nurse told me even as much as 3 months it may take and I’m on 125 mcg two months now. This experience has taught me a whole lot in patience. I’m afraid I may be going a little hyperthyroid with the dosage yet I do not want to go down to 112 mcg as my endocrinologist and I calculated I probably should be on about 120 mcg yet there is no such tablet that I know of. I’d rather stay where I’m at unless for some reason blood tests show I’m going either too much hyperthyroid or even hypothyroid again 6 months post RAI. I know some people where it took over 2 years post RAI to get regulated and then for some much quicker. We are all so different. I hate to say I had a miserable time on Methimazole with dosing and symptoms and for me at time the joint pain was unbearable!

I saw that for me it takes a while before I feel better like 3 months with a dosage change. That was on Methimazole and I’m seeing it now also on Generic Synthroid. My internist was tired of seeing me when I was up and down on Methimazole as I could not get into my endocrinologist that frequently. One time I was very depressed on Methimazole and it was my levels and he wanted me on an antidepressant. I told him let’s increase my dosage by 5 mg and in a few weeks time depression gone! Same with the joint pain! I just found out that I know my body better than these doctors who will say otherwise! At least my endo had a TT so he has been through stuff himself. A fear I have although I try not to be fearful or project is my Thyroid Eye Disease getting worse post RAI. I am being monitored; for some this can become debilitating. Yet I find that my eyes feel better now than they did when I was on Methimazole; I hope that is a good sign as it got pretty bad there for a bit.

I hope that your endo #2 works out better. Sometimes it takes a while to find the right doctor. I’m on endo #4 yet #2 left me so not my choice to move on. In time it will get better; at least it has for me! Take care and do hope you feel better soon and that your journey gets easier….beach

[Naisly]

#1175009

I did think this thread was about “Joint/Muscle Pain – How common?”

Quote:

but to make statements to people who are blindly trying to navigate their way through something where limited information is provided, who are in pain and are scared, and where there is no difinitive answer out there to why we are in pain, how long it will last and if it will ever stop and state that it’s not a big deal and the answers are obvious appears arrogant and feels very dismissive.

I thought I was answering these questions in my first reply. Then I thought (big mistake) I clarified a few things with my second reply.

I didn’t think we needed to go off topic for you to feel better, or I could have written a quite wordy sad response and went off topic a while ago. So, I am sorry if I was mistaken.

Quote:

Ok, so depending on your treatment, and where your at with this disease, something might not suite you so remember its always best to talk with your doctor.

In my first reply I said this – because not all advice will suite you. And it would have been ok to say so, but to be mean about it is just wrong when someone was trying to help and ANSWER your questions – Joint/Muscle Pain – How common?

Then to ignore my last post?…..

I do like to thank you for the sleepless night last night.

~Naisly

[WWWI2]

#1175010

Beach,

I will take heed of your warning regarding self dosing. I think those are wise words. But that still leaves me, especially knowing that any adjustment can be significant, with great frustration the little consideration this doctor made in adjusting my dose.

What I have learned is that a very little can have a very large impact and that the reprecussions can be significant.

I’ve been so self involved about all this that I need to go back and re-read what you went through with Meth and RAI more thoroughly. I will probably have MORE questions lol.

Considering what you have been through you are clearly a very strong individual. None of this is for the faint hearted.

WWWI

[WWWI2]

#1175011

Beach after reading through all that in more detail, please tell me for good or for bad, knowing everyone is different, 1. What was the benefit to you of RAI over ATD’s. 2. How has RAI been for you (yes I’m scared to know, but would like the truth from your perspective, obviously depending on your comfort level) the good, bad and ugly. 3. If you knew then what you know now, what would you have done differently, if anything. And anything else that happens to pop into your head

Thanks so much for all of your posts. I was in quite a rage these last few days and simply being heard, while it doesn’t take the pain away, it does help me temper the rage. So thank you and to all of you who have posted.

WWWI

[catstuart7]

#1175012

WWW, I’ve read that it is very common practice for an endo to halve the original dosage when the thyroid levels come into range. So it’s not an entirely crazy thing your endo did going from 20 to 10. That said it clearly didn’t work for you! My endo reduced my initial dosage by a quarter when my levels came into range and I immediately began to become somewhat hyper. After a few back and forths on dosage it has become clear my initial dosage actually IS my maintenance dose. I think it’s very individual though and our docs need to be open to discovering what works for us rather than following any formula. For me the joint pain is definitely linked to rising thyroid hormone.

My theory on the docs is that managing Graves is at the limit of their knowledge. It is hard to treat and varies hugely based on the individual. Even which systems are hit hardest (beyond the thyroid) vary by individual. I find the psychological and memory effects most disturbing. I’ve gotten into quite a few internet battles since this started, it is easier to feel aggressive and act on it with Graves. I’ve also learned that it lowers the pain threshold, emotional and physical. But I read of others who don’t have this problem at all and have other issues. Some have eye issues some don’t. It is scary to have a condition you just can’t self treat, must have a doctor for and then they turn out to have feet of clay. My current tactic is to educate myself as much as possible, so I don’t allow my docs to do anything I know would be harmful to me. But beyond that I try to work with them and establish a good relationship. It is a challenge.

I wish you luck and hope the pain issues stop soon!

[beach45]

#1175013

WWW12,

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!

[Noah2013]

#1175014

Hello everyone I just recently found out that I have graves disease…I went to the doctor in february of this year because my throat was swollen ,my eyes were big and I had the shakes to where I couldn’t even write…the doctors ran blood test and etc test..and came to the conclusion that I had hyperthyroid problem..they me on medicines to slow my heart rate down and everything…when I returned to my visit to be checked it wasn’t working fast enough for the doctor he was worried about my well being so they ask me to triple my doses because it was so much adreline pumping through my body ..he said if I got to upset I would have a heart attack….so he wanted further opinions…so he sent me to a specialist for more observations…I had aw ready went through the stomached saga ,hot hot sweats hair loss and so more things…the specialist recommended the removal of my glands…and when they checked my glands they were the size of a grapefruit and had started to cut off my breathing….when they did a ultra sound they found rumors in my throat also…so I had to go through so more test to check if they were cancerous???thank the father they wasn’t so they speed up my procedure fast for me to have surgery…but I have graves disease and now my bones or muscles ache so bad and my eyes are big????my appetite isn’t the same I don’t have energy and on top of that my shakes are coming back….so it’s back to the doctor for me…

[WWWI2]

#1175015

Catstuart,

I’m not angry that he dropped me from 20 mg to 10 mg, in fact I appreciate the fact that he started me on 20 mg as opposed to 30 and was being conservative from the get go. I was fine when he dropped me to 10 mg, in fact because I responded fairly quickly to the 20 mg, and had hoped the same would happen with 10 mg.

Where the problem came in was I didn’t respond well and he basically abandoned me and pushed me off to my PC, who had no idea what to do. Considering that I anticipate that RAI is in my future and unlike the methimazol, which can be adjusted, once RAI is done, I’m stuck and if it things go badly and if history is any indication of future actions, I could be in trouble. What’s he going to do then? Send me to my Vet?

Beach,

Thank you for sharing your story with me. You have had quite a time for several years. I hope the levels you are attempting will allow you to stabalize. It also gives me some hope that you did survive RAI despite the challenges it presented. I’m not sure I’m ever going to not be afraid of it. Doesn’t mean I won’t do it, just that fear will be have a constant presence.

I can’t even imagine what you must have felt with a TSH of 60. That’s insane! But getting off the Meth roller coaster, I do understand. I too have heard that NSAID’s are not a good idea with Grave’s but I also understand that depending on how severe the situation, it might have to be an option.

I think my Endo is a bright guy, I’m not sure how knowledgable he is regarding Graves. Either he doesn’t know much or he knows a lot and I simply make his life inconvenient. Either way, I’m going to roll the dice and see what else is out there.

Thank you again for sharing so much of yourself with me. It gives me an idea of what the future holds for me and while we are all different, reminds me that I just have to take it day by day, educate myself as best I can and fight for myself. Thank you

Noah,

I wish you ease in your journey and hope you find the help that you need. Sending thoughts of comfort and relief

WWWI2

[Kimberly]

#1175016

@Naisly – Emotions can run high when we are dealing with thyroid levels being out of balance…and this can be compounded by the fact that things can come across differently in writing versus being said in person. So please don’t let this discourage you from posting!

@Noah – Hello and welcome. I wasn’t sure from your post if you have already had your thyroid removed. If not, do you have a referral to a surgeon? That would be the next step. This site has some great info about thyroidectomy. http://endocrinediseases.org/thyroid/surgery.shtml

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

If you are having eye involvement, it is a good idea to visit an experienced ophthalmologist to get an initial evaluation done. Your endo might be able to refer you to an ophthalmologist, or this site can be helpful as well. (Same note as before about clicking on links). http://www.asoprs.org/i4a/pages/index.cfm?pageid=3504 Take care!

[Author]

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