[ewmb]

#1065490

So sorry that you are feeling so unwell. Been there done that…….. I went off methimazole cold turkey because I wanted to have RAI. It took me 9 months to get down to low enough levels that they would give my the RAI. It can be a long hard road. I would keep a diary of symptoms and feelings including BP, pulse, sleep what meds you took that day etc. so that you can see any patterns emerging. Watch out for weight loss, tremors any symptoms that are Graves related. Other things can cause the same things to happen but if your GP says you’re good otherwise it might be time to push harder with your endo. I had to show my endo the pattern in the drop of the TSH and free T-4 over time when I was going down. He only looked at the last test and compared it to the new one. The normal levels are a lab average not you personally. Maybe your GP can help you out with talking to the endo if you can’t seem to get her to understand that you aren’t crazy. My GP knew that something was really wrong with me even though we had to hunt to find out what it was at first. My actions and symptoms were just so out of character for me that he was convinced that I was really sick.

Hope that today things seem a little clearer for you. I know the ups and downs are really awful.

ewmb

[BMSol]

#1018527

I am 29 years old-have Graves disease-have had it for 5 years now. First 2 years was reluctant to take my meds and pretty much lived in a state of hyperthyroid (my fault-didn’t take meds regularly-in denial) so I feel confident that I know the symptoms of when I am hyperthyroid. Last month I posted about how I switched endo’s bc I was looking for a fresh perspective and for someone to show some understanding. Was living with ‘normal’ lab values but wasn’t sleeping without otc sleep aids and would have some periods of ups and downs and was just looking for some ideas on how to alleviate that. Maybe bump up my low dose of methimazole from 10mg to 15mg and give me a prescription sleep aid. Something simple-and well obvious to me. If you read my last post you know my new Endo immediately took me off my methimazole and said 5 years is way too long to be on it. She said lets see if you are in remmission and if you are not we will do an RAI and give you synthroid bc it’s safer. No other options given that’s that. And I tried explaining that it seemed that I am feeling my thyroid symptoms occasionally and she said if my labs are normal in no way am I feeling thyroid symptoms and I must have an anxiety disorder. So she just said no weening-your off your meds and lets see what happens. Well as the days continued off my meds I started feeling worse-about 20 days off meds I couldn’t take it anymore-my pride didn’t want to go and do it but I went to my primary care and told him I couldn’t handle it anymore. Fine-call it want you want anxiety disorder whatever… I just needed something for it. I wasn’t sleeping but 3-4 hours if I was lucky, my heart was racing (heart rate between 85-95 average when I am just sitting at my desk-going higher if ANY stress was present and I am in pretty good shape so it should really be much lower), I had stopped running my 5 miles/3 days a week bc I am getting out of breath just making the bed. I am MEAN, anxious, irritable. I’m stuttering bc my mind is just too fast for it’s self. I’m dropping thinks and I feel like my brain is just in a fog and I can’t think straight. ALL of these symptoms I felt when I was severly hyperthyroid when I was first diagnosed. My primary care thought it was a bad idea to just take my off my methimazole and he said nothing he can do can ‘fix’ what is going on but he could help alleviate my symptoms while we try to figure out if I am in remission. He was so understanding and it was great to be looked at like I wasn’t nuts. He said no matter what he gave me eventually my graves disease would win. But to help he gave me Klonopin during the day to calm me down and gave me Ambien at night to help me sleep. They worked great at first, now I’m starting to have trouble getting to sleep again and the low dose Klonopin is barely taking the edge off. I have been off my ATD’s for 34 days now. I went last Wednesday to get my first lab values since being off the meds. They called this morning and said my TSH and Free T4 are still within normal range and we need to check again in 3 months. Now I am totally discouraged and just feel like a mental case. I am not making up my heart rate beating so fast, I am not making up the mood swings and the feeling crazy–not that i don’t want to be in remission bc I do -but i was completely expecting my labs to be off since I was feeling so bad. I am so lost and don’t know what to do. Maybe I just am bipolar I don’t know. NO ONE around me understands, they are understanding…but they don’t get what this feels like. I have started stuttering to the point where I can’t do my job (I train people on a software application). I don’t know where to turn or what to do. Does it take time for my ATD’s to get out of my bloodstream and for my labs to start showing I could be hyperthryoid again? Why do they never run a T3 or why have I never had an RAI uptake test? I just don’t understand why I am telling them how I am feeling and the Dr. is dismissing me and saying my labs are normal…so I don’t know what to tell you-guess you have anxiety. It’s all so discouraging. All of you who have Grave’s disease know exactly what I am talking about. You feel like you are losing your mind-well now that my labs are still normal even though I am off my meds-and I am feeling all my symptoms and they are getting worse-just maybe I just am losing me mind… Encouragement, medical advice-any words from anyone would be greatly appreciated right now.

Thanks,
B

[Kimberly]

#1065491

Hello – Sorry you are still dealing with all this frustration. The suggestion from ewmb to keep a symptom diary is great advice. Try to make it as specific as possible. Then if you can get copies of your labs, you might be able to correlate experiencing certain symptoms with having your levels in a certain place. Symptoms and labs don’t *always* correlate exactly, but at least it will give your doc some "food for thought."

On the T3 issue, sometimes as patients, we have to fight for that test. I was initially told that my insurance company wouldn’t pay for it. So I said I would pay for it out of pocket…but as it turned out, my insurance company *does* pick up the tab for this test. It would be unusual, but not totally unheard of, for your T4 to be in range and your T3 too high. If you can pinpoint that as the cause, then you can start discussing appropriate treatments with your doctor.

You deserve to feel well again, so I hope that you will keep fighting until you find a doc who will work with you to get to the bottom of your symptoms…and get you on the path to wellness again.

Best of luck!

[Bobbi]

#1065492

I recently had my endo bump down my replacement hormone — after she raised it — because I wasn’t sleeping. Everything else was fine, but I could not sleep. Fortunately for me, my endo was willing to "tweak" the dose to see if that solved the problem. A minor dose adjustment was made, even though I was in the "normal" zone, and I could sleep again without any over-the counter or prescription help. So I think it is enormously helpful to have a good relationship with the endo, and have an endo who understands that sometimes just being in the normal range isn’t quite enough.

The problem we run into is that our hyperthyroid symptoms can be caused by multiple different things, not just too much/too little thyroid hormone. So the idea of keeping a symptom log is good, particularly if you can tie things into OBJECTIVE symptoms as opposed to subjective symptoms. Simply saying "feel tired" is not the same as "get out of breath walking to my car." "Resting pulse rate of 95" is objective, where "rapid pulse" isn’t. Doctors have a whole lot of science background, so providing objective information usually is more compelling to them.

As for the sleeping issues. The Ambien might have stopped working because we develop resistance to it over time. When I was taking it, I could not take it for more than two or three nights in a row before the dose stopped working. So, I developed a strategy of taking it only once or twice a week. In between I would go sleepless OR take an over-the-counter dose of a type of antihistamine that makes me drowsy. I also found that drinking warm milk helps, as does drinking chamomile tea. As I said, now that my replacement hormone dose has been corrected I’m not having the sleep problems. But I had them for quite a while.

I do hope you are feeling well again, soon.

[mamabear]

#1065493

I wanted to suggest "training" your body for sleep. We have a habit as graves’ and non graves’ patients to get dressed for bed and hop in bed and think we are going to sleep right away. Yeah..not! I wish!
We have to train our bodies to become relaxed..yes it is hard when we are upset and feeling our pulse rate high but we really have to try to do this.
I have a "bedtime routine", "evening routine" and a "morning routine"
Bedtime routine consists of:
Brush teeth
Get dressed for bed
Turn lights out/lock up house
Turn TV on/book/radio 15 minutes Set timer for TV if you have one on it
Reflect/prayers/thinking of loved ones that need prayers
Bed time is a time to relax and not get up or go on phone or do the last load of laundry you forgot, it’s about getting ready for it. Sometimes this is what we need, it usually takes about 28-30 days to have something become a habit so getting your habit for sleeping might take that long and it means every day the same routine.
This is what I needed for me and it helped and it still does help. I have been unable to do that since I have little kids that like to wake me at night with potty and I need this and I need that but when they dont I do get rest.
I was going to bed at 11pm,12am then complaining, so I start my bedtime routine about 9pm, yes I know I’m on here typing but I thought was more important than getting bedtime routine done, i’ve been doing it for a long time so it’s easy for me now.

I can’t offer anything else just thought this might help you. Hope you feel better.

[BMSol]

#1065494

Thank you ALL for your suggestions! I really appreciate and consider them all. It means so much to have individuals reply who understand.
Interesting enough later that day that I had originally wrote this… my endo had someone from her office call me back again to tell me NONE of my symptoms I expressed to her are related to my thyroid since my labs are in ‘normal’ range (since earlier that day when I received the initial result I told the person in the office that I wasn’t feeling well-she must have told the Endo so I was getting a return call). Well we started talking and I expressed that I was upset that my endo was not the one calling me back after I expressed that I wasn’t feeling well and I was concerned that we were going to wait 3 months for more bloodwork and told her I was wondering why I have never had an Radioactive Iodine Uptake test done ever. She said well- that’s bc you have normal lab values and you have no problems with your thyroid and do not have a thyroid issue. I told her Lady (as politely as I could be ) I have Grave’s disease and we took me off my meds and we are trying to see if I have achieved remission. She says "Ohhhhhh I hadn’t realized that. So sure- do you want me to have her take your labs next month and do a full thyroid panel?" Just shocking that the person who called me back to make sure I knew my symptoms had NOTHING to do with my thyroid hadn’t even picked up my chart to see who she was calling or have a clue what she was telling me. And then I have to tell them to run a full thyroid panel! I’m not the Dr. I don’t know what to do here-I don’t know if it’s necessary I just figured I’d ask my Dr. if we should!! Anyway, just wanted to share that bc I find it very sad how impersonal and unprofessional and poor medical treatment can be for Grave’s patients. But I am becoming my own advocate more and more. I have read some very interesting studies today… One for example- "A literature review in 2006, whilst noting methodology issues in the consistency of Graves’ disease diagnostic criteria, found many reports about residual complaints in patients who were euthyroid after treatment with a high prevalence of anxiety disorders and bipolar disorder, as well as elevated scores on scales of anxiety, depression and psychological distress". This is just one of many pieces of evidence I have read explaining the complexities of Grave’s disease and how so many factors determine how you feel even after you have acheived remission. I just find it hard to believe a Dr. can have someone call me and tell me nothing I am feeling has anything to do with my thyroid-even if I am in remission (which I hope I am) when there is so much evidence suggesting otherwise. Guess I will just keep reading reputable sources and teaching myself bc I am learning to trust how I feel and what this disease is all about. Even it took me 5 years to put it all together… Thanks again to everyone for responding!!! Hope everyone is feeling well!

[Ski]

#1065495

It is truly frightening, the lackadaisical approach that can be exhibited by our own doctor’s office staff to OUR health. That can be our first lesson ~ watch out for yourself, know what’s going on in your own body, because sometimes you actually need to enlighten your healthcare providers. Sad but true. I’m so glad you’re finding your way, and I do hope you find some relief, SOON.

[dixiegirl]

#1065496

I completely feel your pain and frustration. I actually just found out today that I have Graves Diease. It has been a two year nightmare just to recieve the diagnosis. I grew up in a family of women with hypothyroidism and recognize some of the symptoms of a thyroid gone bad, but when I shared my concerns about my symptoms with my primary doctor she blew me off and recommended I start taking anti-depressants(problem was…I wasn’t depressed). My overall thyroid levels kept coming back within normal ranges. Finally after two years of dealing with the symptoms of overwhelming fatigue, tremors in my arms and legs, and just an overall crappy feeling(I didn’t even realize I had many other symptoms; I just thought my eyes watered from allergies and I hated the sun and hot weather ALOT! lol); I drug myself into the doctors office and demanded to be retested(and by retested I wanted individual levels). Come to find out my TSH levels were non-existant and my free-t4 levels were through the roof!! The only way I got her to run these tests was to make a bargin with her that I would take her crappy anti-depressants if she would run this simple blood test! Come to find out I have probably had Graves Diease for at least 2yrs and I have a multinodular goiter that isn’t easily discovered by a physical exam because it expanded side-ways and to the back!

My advice to you is, if it doesn’t sound right to you STAND YOUR GROUND!! Don’t be bullied into accepting that the doctors know what is best(make them prove it). Make a nuisance out of yourself and MAKE them pay attention. Sometimes the squeaky wheel gets the grease! Educate yourself to the best of your ability. The internet is a wonderful tool for learning. Write down questions to ask(because if you’re anything like me, you will forget them 5secs later). Suggest tests you’d like performed and if the doc. refuses, get a clear reason why she doesn’t want them done. This diease makes you want to give up sometimes just because you don’t have to energy necessary to fight, but it is worth the drain to finally see results. Hang in there!!! and keep fighting!!!

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