Suffering for years after Graves Disease
Posted , 11 users are following.
Hello - just found this website. I am just so curious about something and kinda want to take a pole. This is my experience and as I basically suffer from this alone, I have no idea what I can possibly attribute to my Grave's Disease and subsequent thyroid removal and what might not be.
I am 56 yrs. old and was diagnosed with Grave's Disease over 20 yrs. ago. I got very thin, had tons of energy, didn't need a lot of sleep, shaky hands, and my eyes were looking odd to my mother. Finally, when my period started becoming irregular, I went to the doctor, where they ran many tests to discover I had Graves Disease. I was put on some medication I was told could only be taken for a year. I remember it being like three times a day I had to remember to take this medication. After a year, they took me off it and my thyroid levels skyrocketed again, so as they put it, I had no choice but to have it removed by drinking radioactive iodine. That's what I did and I immediately gained 50 pounds and had no energy. It took quite some time to get my levels right.
So, I go along for years with mostly just being overweight, but in my 40's, weird things started happening to my body. First of all, I suddenly had horrible yeast infections. After one of the infections that was so horrible I couldn't even walk, the pain associated with a yeast infection just didn't go away. I suffered for weeks and finally started working with some doctors. One finally told me that they were sorry, but I was just going to have to live with this pain. I was devastated. But, I worked with a specialist and have been taking gabentin for over 12 yrs. now to keep the pain in check and I had to have a hysterctomy (not that I'm complaining about that!). But, it didn't stop there. I started having panic attacks. I have always been a somewhat anxious worried person, but always controlled it. I had such a bad panick attack that I wound up in the hospital one night with an EKG that showed I might be having a heart attack and my blood levels also indicated so. It went so far that they did an angiogram that night. So, then I was given Xanax. Oh and I have been on anti-depressants (various ones) over all these years also because of having to deal with pain on a daily basis. Then my joints started hurting, especially my back, feet and knees, but also in my hips at times. So, I'm on arthritis medicine for that. Then I started getting nerve pain along the sides of my thighs - both sides in the same place on each leg. This pain just keeps increasing over the years and now I have nerve pain in many other parts of my body. My doctor is calling this fibromyalgia. I also have terrible problems with my gums and teeth. I'm suffering with lots of mouth pain as I write. I am quite heavy now - 5'9" and 250 lbs. I also helped raise a grandchild for 6 yrs. and then his mother moved him far away into an insecure environment and my depression has deepened since then. Yes, I have seen counselors and physical therapists, but no one can really help.
I know this is a book, but for soooooooooooo long now I have wanted to connect to other people who may have a similar history and find out if they are suffering from many of the things I suffer from now. At this time in my life, I can't even afford to go to a doctor... Thanks to anyone who takes the time to read.
2 likes, 20 replies
linda187 a_mc
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a_mc linda187
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laurasb a_mc
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a_mc laurasb
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I feel like I'm very depressed but that goes with all this. Do you feel that your depression, etc. is tied to the thyroid issues? Has a doctor ever told you they believed that was possible?
fern12 a_mc
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I would guess you need more thryoid supplements. One thing that has also helped me avoid they hypothyroid symptoms is the antidepressant Wellbutrin. It is a mystery how it works but it is different than most antidepressants, and seems to work against the hypothyroid symptoms in my opinion.
Acetyl-L-Carnitine has also helped my symptoms and probably also switching from regular B12 and folic acid to Methyl B12 and Methyl folacin.
I am 66 and was diagnosed with Graves' Disease when I was 60. I took Methimazole but refused RAI or surgery. I was able to go off the Methimazole in December 2012 and have not had to take it again, since. I was on Cytomel and later on a small dose of Levothyroxine for about 6 months total, but my TSH dropped in the end and I had to go off both of them. I could hardly stand it until I took the Wellbutrin, Acetyl-L-Carnitine, Methyl B12, and Methyl folacin. I don't know what to suggest about being able to afford them and the doctor's visit.
a_mc fern12
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10jant a_mc
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I have read your story. I am confused as to why you believe you cannot afford to go to the doctor?
With long term illnesses there isa a lot of NHS help
a_mc 10jant
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linnet2012 a_mc
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a_mc linnet2012
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barbara127 a_mc
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I am sorry you are suffering so much. However, i too have fibromyalgia and was diagnosed with it in 2005. A long time before my Graves Disease started. Its taken me a very long time to come to terms with it and ive had to train myself to deal with the horrendous pain and tiredness while trying to hold on to a full time physical job. I struggle but im still there.My graves disease was diagnosed about two years ago and i eventually had the radio-iodine. Since then my levels have been up and down while trying to find the right dose for me. Although things got so bad about three weeks ago and my blood test revealed that my levels are too high. My medication is reduced but my GP is concerned that my thyroid is back! I have to wait a few weeks to find out if this is the case. In the meantime, i m having really bad palpatations,weakness and feeling shakey and sometimes nauseas. Im dreading if my thyroid is back because i didnt have a very good time with the radio-iodine.
As for the fibromyalgia, i struggle everyday and take anti depressants and strong painkillers. Last year, due to very bad periods, i had the thermablation to quarterise my insides as they werent willing to give me a hysterectomy. Ive been great with that up until this week where ive had some horrific period pains but still no periods. I was first taken ill when i was 38 with fibromyalgia and have since had problems after problems. Including the removal of my gall bladder,shingles twice ,hives and gynae problems. Ive also sarted the menopause now. I am 50 in a few weeks and it doesnt look like my health is getting any better
a_mc barbara127
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So, do you tie all of this stuff together or have your doctors verified that it all ties in together? I did pretty good for years with managing the symptoms, but the past couple years, I see myself really going downhill fast....
lisa_25324 a_mc
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janine37808 a_mc
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I'm in Seattle - 10 years post RAI and have been on levothyroxine only. Despite complaints over several years that I'm feeling agitated, anxious and a bit whack, they tell me my TSH is normal, or if it adjusted, it doesn't make much difference, or only for awhile. I do question the validity of those tests, especially considering I was having major troubles several years before I was ever diagnosed and treated. And yes, here in the mighty USA the healthcare system remains a relative cluster f*&^%k unless you have the money to pay for boutique docs and they are probably on the edge of comitting suicide too.
But back to being cured of Graves - NADA. I've quit drinking, smoking, have recovered from burnout from being a caretaker but have ongoing intermittent OUCH running through my body, powerful bouts of agitation, anxiety despite being on 2 antidepressents. However, my heart is not racing, I'm not flying in to fits of rage and I've gained weight too.
I think the picture is much wider than TSH levels. If I had the extra money to spend - ha ha, I'd find an open minded endocrinologist who would work with me trying something else besides levothyroxine and perhaps looker broader than the tSH test only. try balancing T3/T4? but I understand getting the dosage right can be tricky so you have to have a doc who can work closely with you. Good luck to you.
Jay1369 a_mc
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