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Suffering for years after Graves Disease

Posted , 11 users are following.

a_mc
a_mc

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

20 Replies

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  • linda187
    linda187 a_mc

    Posted

    I am really sorry for all your pain. Don't know where you live, but getting a total and free carnitine blood test might help. Taking L-carnitine supplements and Vitamin D and Selenium supplements help a lot as well.
    • a_mc
      a_mc linda187

      Posted

      Thank you for responding.  Years ago, I tried supplements and diet changes.  I was never convinced it made any difference.  I live in Oregon and am going to get on a different insurance next year.  I have no idea what kind of tests they will want to do.  I haven't been able to afford going to the doctor for a couple years. 
  • laurasb
    laurasb a_mc

    Posted

    Have you had your levels checked recently? I have a lot of those same sympthoms, including depression and weight gain, when my THS is too high. I cannot be hyper. I was at .5 but I have to be closer to 1 on the scale for me to be ok. I am not sure what scale you/they use in the UK. The one I mention is for the US.
    • a_mc
      a_mc laurasb

      Posted

      Thank you for responding.  First, I live in the US too.  I should have said that.  I haven't been able to afford going to the doctor for a couple years, but will starting on a new insurance next year.  I have had my actual level checked maybe a year or so ago.  They always say it is fine....

      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
    fern12 a_mc

    Posted

    I suppose since the RAI you have taken Levothyroxine, right?  How much?  any Cytomel? [Liothyronine]  Did you have any changes to your eyes after RAI?  Sometimes the thyroid eye disease gets worse after RAI.

    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
      a_mc fern12

      Posted

      Thanks for responding.  I forgot to say in my "book" that I'm from the US.  I was on Synthroid for years and then switched to Levothyroxine.  I get fairly regular tests for my levels - but I bet the last one was over a year ago.  I'm always told my level is fine.  I'm going to start on a new insurance next year so maybe they will run some better tests and I can get something figured out.  I'm on Celexa....maybe I'll ask about the Wellbutrin.  I also tried Cymbalta for a while but I can't afford it.  While I was on it, my symptoms were so much better, I felt so much better, and had more energy. I can't even afford the generic - I was supposed to come up with $315 a month for it.  I'm hoping that with the new insurance, I might be able to get it, though. 
  • 10jant
    10jant a_mc

    Posted

    Hi there, 

    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
      a_mc 10jant

      Posted

      Well, that was my bad.....I forgot to say I'm from the US and even though I have insurance, it's basically catastrophic.  I think you have it better in the UK.  Next year, I'm going to try a different insurance and I'm hoping that I might get some tests done and maybe some medication that I want to try but also can't afford.
  • linnet2012
    linnet2012 a_mc

    Posted

    How are your thyroid blood levels now ? The symptoms you are describing can all be connected to an under active thyroid. Obviously after RAI you are probably on tbroxine in some form. Don't know much about this but from what I read on here, it's a lit more complicated than just having within range blood work. There are different types of thyroid replacement - maybe you are on the wrong one for you ?
    • a_mc
      a_mc linnet2012

      Posted

      Thank you for responding.  I forgot to say in my earlier post that I'm from the US.  My last blood test was probably about a year and a half ago.  I think I might need some T3 medication.  I've been on Synthroid and Levothyroxine for years - ever since my thyroid was removed.  I'm starting a new insurance next year and I'm hoping I will start getting more help.  I just wanted to see if my symptoms might match others and if anyone thought it might be connected to the Graves Disease.  Or if their doctor believes them when they talk about their symptoms.  I feel like a new doctor might not believe me.  I wanted to know if anyone's doctor feels that the thyroid issues can cause or are related somehow all the different pains I have, my anxiety issues, my depression issues, etc.
  • barbara127
    barbara127 a_mc

    Posted

    Hello

    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
      a_mc barbara127

      Posted

      Thanks for responding.  I've had shingles on time (on my face), horrible gum and teeth issues (right now having severe pain in my mouth).  I really haven't been able to afford going to the doctor for almost two years.  Oh, I also suffer from IBS.  Isn't life grand? 

      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
    lisa_25324 a_mc

    Posted

    OMG I know just how you feel.  I had graves and raido iodine when I was 35,  I will be 50 in april.  No insurance, no doctor, no money, no hair, no relief.  I will pray for you.  I don't get it either.  I worked 27 years as a waitress,  I can't do that anymore or any other job for very long.  I can't seem to get disability or help from a doctor when I do save enough money to go see on.  I have discovered the conection between raido iodiane and nerve damage and never ending pain on my own just from digging on the internet.  The doctor never said anything about I would be fat and in horrible pain for the rest of my life when he said I had to have raido iodine.  I don't understand this country we live in.  I'm ready to give up.  I don't know what else to do, I also have hep.c and alopecia. The next person that tells me maybe I sould try alittle excerise ..., please forgive me God for complaining and thinking bad thoughts.  God Bless you I hope you get some relief soon, I just wanted you to know you are not alone.

     

  • janine37808
    janine37808 a_mc

    Posted

    This is an older thread I found from doing a general Google search on anxiety "years after Graves"

    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
    Jay1369 a_mc

    Posted

    My journey has only been short with this disease but also difficult. I will be praying you have relief and thank you for sharing with us so we can compare notes.
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