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lois56337
lois56337

I was diagnosed and had RAI in 2007, in 2013 I started Graves Eye Disease, with the bulging left eye and double vision on that side.  After about 2 years they decided to do Orbital Decompression surgery.  Big mistake, I have had problems worse than ever, ever since.  Numbness on my left side, then they decided since my right eye is bulging I had an MRI and they found inflammed and swollen muscles behind my eyes.  SO, they have me on Steroid infusions and I had 10 days of radiation.  NOTHING is working.  My sight gets worse all the time. I feel like my eyes are sinking back into my head.  The numbness is worse than ever (oh and In Nov. I had a biopsy of that left muscle).....I feel like I am being used and they aren't helping me at all............  I recommend NO ONE EVER have RAI for this condition...... and check before any surgeries, biopsies and anything they recommend...........  I feel I may be ending up blind from all of this.

 

0 likes, 24 replies

24 Replies

  • linda187
    linda187 lois56337

    Posted

    Lois,

    I am so sorry for your experience but I thank you for sharing your story. It can help so many others who have the eye disease or who are susceptible to it and are advised to have RAI by their doctors.   TED (thyroid eye disease) is part of Graves Disease and is caused by the antibodies that cause this autoimmune problem.  Having RAI does not lower the antibodies and can cause eye disease later in people who do not already have it when RAI is done.  I have Graves and my eye disease manifested as severely dry eyes and red eyes but not the extreme of bulging and swelling.  Possibly it was because I was diagnosed early before my excessive thyroid hormone got really high.  However, even with controlling the hormones with anti-thyroid meds, I had the eye symptoms for a long time until my antibodies lowered into the normal range.  With autoimmune diseases, most doctors treat the symptoms and not the problem.  Their main concern is in normalizing the excess thyroid hormone as this excess can be life-threatening when causing thyroid storm.  They do not focus on lowering the antibodies or I believe even know how to.  I think mine lowered when I added supplements to my treatment plan. The problem with treating this disease with RAI or thyroid surgery or even medication, is that while those methods do lower the excessive thyroid hormones being secreted, they do nothing to lower the antibodies that have caused the problem in the first place. 

    You have had the best medical care for the eye problem portion of your disease.  You may still have a chance at saving your sight with the addition of supplements.  What some doctors have found is that when a patient has hyperthyroidism, they lose a lot of vitamins, minerals and amino acids from their body thru urination and replacing these helps the body to heal.  Most hyperthyroid patients are deficient in Vitamin D which is necessary for so many functions.  I got tested for my Free Carnitine and Total Carnitine levels, vitamin D and magnesium levels.  Was deficient in all of them so added them to my treatment along with a low dose of methimazole.  I have seen posted on other Boards that 200 mg of Selenium or 2 Brazil nuts a day will help the eye disease.  Perhaps if you get tested for the Carnitines, Vitamin D, Magnesium and Selenium, you may find deficiencies and then be able to correct them with the addition of these supplements.  Unfortunately most of these tests are not covered by regular medical insurance, although mine were covered by extended health plans.  They were individually not too expensive to get done but did require a doctor's order to get them tested.

  • linda187
    linda187 lois56337

    Posted

    Oh, forgot to mention, if you decide to test for and add supplements, you might also want to get your antibody levels tested and then re-tested a few months after you initiate supplements.
    • lois56337
      lois56337 linda187

      Posted

      Thanks Linda, I do take calcium with vitamin D daily and Selenium but I think I will asked to be tested anyway.  Thank you for your quick response.  
  • Nonita
    Nonita lois56337

    Posted

    Thank you so much for posting your story,it has given me the courage to refuse the RAI tomorrow.My specialist has been pushing me for sometime to have this treatment and to come off the carbimazole saying that I could not stay on them.I spoke to my GP and he said that I could stay on them as long as I had regular blood tests. Why do they keep giving conflicting advice?After nearly three years of hyper I asked my GP if he would test for antibodies as the specialist had led me to believe it was a nodule causing the problem.I suffered a serious thyrotoxic storm originally.The result showed a very high antibody count so I presume it is Graves. I do have a problem with my eyes feeling dry and irritable so now I am concerned that this might have something to do with the Graves.Did you have any problems with your eyes before you had RAI.I am so sorry that you are suffering and thank you so much for your warning.

     

    • christine57219
      christine57219 Nonita

      Posted

      Nonita, you have echoed my exact sentiments regarding RAI. My NHS specialist was also pushing me toward RAI saying that there is a risk of white cell problems for some patients who take Carbimazole long term. In fact and as many on this board and another board I am a member of, the medical profession DO push Graves/Hyper patients towards RAI or surgery because being HyPO which is what you become after either of the other 2 options is easier to medicate (from THEIR position NOT the position of the patient) AND it is written in documentation that if a patient is going to have any problem with white blood cells whilst taking Carbimazole it happens within the first few weeks of taking it !  I have, therefore, refused to consider RAI or surgery and requested to stay on Carbimazole,I also take Levo Thyroxine as I am on the Block & Replace medication FOR THE SECOND TIME as I did not go into "remission" when this treatment was stopped by my GP after 20 months because she stopped it at a time when I didn't feel well at all BUT blood tests were showing "within range" (I went straight into a thyroid storm within a week or so of the meds being stopped).  Now back on both meds.  I also have problems with my eyes being dry and irritable and a strange double vision.  My optician told me that my double vision is caused by a stigmatism - however, I am not convinced of that !
    • lois56337
      lois56337 Nonita

      Posted

      I did not have eye problems until after I had the RAI...  My eyes are still dry and my right eye bulges some.  My daughter had hyperthyroidism and had surgery to remove most of her thyroid when she was 11, she is fine, my brother had the pills to correct his, he too is fine.  They both had bulging eyes before treatment.  I never had any eye problems but now they say RAI can bring them on.  Just wish I had been given better choices back then.  I was pretty much told RAI was the only thing to do......  
    • lois56337
      lois56337 christine57219

      Posted

      I had double vision in my left eye, therefore they said I needed orbital decompression in that eye because they thought the optic nerve was being compressed.  Last February I had a 3 wall orbital decompression and have had problems ever since.  But, my problems seemed to get even worse when in Nov. last year they said I needed a muscle biopsy of that eye.  I just wish sometimes I had never had anything done.  It is so frustrating.  You can't just work with one doctor these days, you have to go to different ones for different things and I just feel like I have been used for their experiments.......  

       

    • christine57219
      christine57219 lois56337

      Posted

      I have lost any faith I had in the medical profession, which wasn't a great deal before I was diagnosed with Graves/Hyper in 2013 because I had been let down badly by them in previous years with a bowel cancer condition.  Since having Graves, neither my GP nor the NHS specialist ever explained anything about this condition/illness, so even after a year of having it, I still thought it was a condition that I would simply take tablets for (18 months) and then it/I would be cured and that would be it !!  I didn't even know I had Graves Disease or anti-bodies until last year !!  My GP's havent been taking blood tests as often as they should resulting in me going from hyper to hypo and wondering what the hell was happening to me now.  My GP stopped the Block & Replace at th wrong time !!  My last 2 appointments with the specialist have been cancelled due to him being ill.  Anything I have learned about thyroid problems/Graves, I have learned from people on forums like this one or through doing my own research.  The only blood tests my GP does is TSH and FT4 and the specialist does TSH FT3 and FT4 but I've not had vitamin/mineral tests or adrenals etc etc.  It's diabolical !
    • lois56337
      lois56337 christine57219

      Posted

      I know Christine, I feel the same.  I have lost faith in my GP and my other doctors.  No one has EVER explained Graves Disease to me, only that I have a very bad case, so they say.  I have diabetes also, so when I went on steroids I had to consult my GP and they were as bad.  Told me to take one glipizide a day along with my metformin, nothing about when or how to take it.  Then they gave me a sample insulin pen, with no instructions on how to use it, only to dial it to 8 and then when I went to use it no needles, so I had to make a run to Walmart for needles.  Research on Youtube for directions on how to use it.  I just am very disappointed in the medical profession all together at this point.

       

    • Nonita
      Nonita christine57219

      Posted

      Hi Christine.There seems to be a great number of people in the same position as us struggling to find the best way to deal with hyper and not receiving the support we need.I will be seeing the specialist tomorrow and am taking my daughter with me so that she can either ask the questions that I forget or at least remind me what to say.This specialist has a way of making you feel quite inadequate and I always leave without finding any answers.I will let you know tomorrow how things went and if I get reasonable answers and not just pushing RAI.
    • christine57219
      christine57219 Nonita

      Posted

      I have had approx. 8 appointments with my NHS specialist since I was diagnosed in 2013 and I have only seen HIM 4 times out of 8 appointments -  at the other 4 appointments I was seen by 4 different people, so there's no getting to know the patient very well, the patient having to repeat everything to different people because they can't be bothered looking back through files and like yours just make you feel stupid.   Yes please do let me know how you get on.
  • linda187
    linda187 lois56337

    Posted

    It's interesting that they just do Block and Replace in UK.  They don't do that in North America.  Here they treat with Methimazole only.  And it is the high dosages of antithyroid medication that causes liver and blood count problems.  Rarely occurs with low doses.  There is one medical center in North America that does Add Back therapy which is similar to Block and Replace but it only uses very low doses (i.e. 5 mg or Methimazole or less and 125 mcg of Levothyroxine).  This is done after Methimazole only at doses titrated to lab results is given until lab tests are euthyroid (normal).  Then the patient is on Add Back to lower the antibodies and keep you in remission.  For myself, I found that Methimazole normalized my FT3 and FT4 immediately at 10 mg per day but did nothing to increase my TSH or lower my antibodies.  This started happening for me when I added supplements - Regular L-Carnitine 3,000 mg after reading about the benefits of taking this from a study done by an Italian Endocrinologist, vitamin D3 1,000 to 5,000 IU per day, and Magnesium 200 mg per day.  I also took Acetyl-L-Carnitine for a period and that really lowered my TSH and helped normalize all my values.  My Endo and I butted heads initially until he saw my results improve so rapidly.  And now we are partners in my health care - he orders the labs and adjusts Methimazole dose and I take care of the supplements.
    • christine57219
      christine57219 linda187

      Posted

      From what I have read on here and the other forum I am a member of, here in the UK they use a fairly low dose Carbimazole only treatment too which is reduced over a period of time.  When I say "low dose", I think it can be a start of 10 to 20 mgs and titrated down and with no levo thyroxine.  Different specialists use different treatments.  To be honest I'm beginning to think I would feel better on the Carbimazole only treatment.  I have had two periods of time on just Carbimazole since I was diagnosed in 2013.  The first time was when I was first diagnosed and my GP put me on 40 mgs Carb to calm some of the symptoms down (pounding rapid heart beat/pulse/breathlessness) until my appointment with the Endo came through about 10 weeks later and then again when the GP stopped my B & R (wrongly) and I went into a thyroid storm after about 1 week, I went back onto 40 mgs Carb for about 2 months until the Endo added the levo thyroxine again and during those weeks WITHOUT thyroxine I seemed to feel much better and had none of the symptoms I seem to have when taking thyroxine which are anxiety/panic and breathless when I exert myself. I still can't walk more than 50 yards without getting breathless, can't give the duvet a good shake, it's terrible.  I'm not over weight - I'm under weight having lost far too much because of this condition and aged about 10 years ! When my next appointment EVENTUALLY comes through to see the Endo, I will raise this with him.  
    • Nonita
      Nonita linda187

      Posted

      Hi Linda.I live in the UK and have never been offered block and replace.I have only ever had differing doses of carbimazole for three years.I have been offered RAI but so far have refused it .I am seeing my specialist tomorrow and will yet again refuse the RAI but I will suggest that I try the supplements and remain on the tablets.They seem very loathe to share any information and very rarely tell me my blood results.Having read your post it looks as if I will have to be a bit more firm and ask more questions.You say you are on these supplements,could I ask what dose you are on and what your blood results are so that I might have an idea of what I should be taking.
    • linda187
      linda187 Nonita

      Posted

      Hi Nonita,

      Currently I am on 2.5 mg of Methimazole every other day with 500 mg of Regular L-Carnitine on the off days.  I also currently take 1,000 IU of Vitamin D3 (gelcaps), 160 mg of Magesum Citrate, Curcumin, and Omega 3, vitamin C with Lysine.  My last labs were on December 1, 2015 and  were

      TSH 1.19  (Range 0.30 - 4.00),

      Free T3  3.9 (Range 3.5 - 6.5),

      Free T4  13 (Range 9 - 23)

      My Graves antibodies are all within normal range

      In 2009, my TSH was essentially 0 though my Frees were in the high end of range and I then took  3,000 mg of Regular L-Carnitine, along with the Vitamin D and at one point, I stopped the Regular L-Carnitine and took 500 mg of Acetyl-L-Carnitine instead.  Was on 10 mg of Methimazole daily then when I started the supplements and my Endo lowered my meds and I lowered my Carnitines as my labs improved.

    • linda187
      linda187 Nonita

      Posted

      Nonita I should caution you about using Acetyl-L-Carnitine if you want to try this.  The research study was done with Regular L-Carnitine at a dose of 3,000 to 4,000 mg a day.  While I tried this first and it did raise my TSH a little, I was mostly using this to try to get my TSH up and Acetyl-L-Carnitine worked better for that when combined with a low dose of Methimazole.  It is extremely sensitive as it crosses the blood-brain barrier and gets into the cell nucleus.  It needs to be monitored very closely and frequently and adjusted often.  I have seen patients go very hypo in 4 weeks on it so you need to be mindful of how you are feeling while you are on it and take thyroid blood tests as often as every 2 to 3 weeks while on it.
    • Nonita
      Nonita linda187

      Posted

      Hi Linda,Thank you so much for all the information.I think the best thing for me to do is get my blood results and then decide what supplements to take using your guide lines.My regular Doctor is very supportive but the specialist at the hospital treats me as if I am lacking in ability to understand anything and is quite arrogant and unapproachable.Thank you once again Nonita
    • linda187
      linda187 Nonita

      Posted

      That sounds like a good plan Nonita.  If you want to post your labs when you get them, I will get an idea where you are at.  Would your regular Doctor also test your antibodies?
    • Nonita
      Nonita linda187

      Posted

      My Doctor is very supportive and I did have an antibody test done in December but I don't really understand it.TSH receptor antibody level >40U/L.Serum thyroid peroxidase antibody concentration >600U/ml.Serum T4 = 15.6pmo/L.TSH = 0.01mU/L.TRAb assay detects both TSH-R stimulating and blocking antibodies. Are you able to make anything out of these results.I should be able to get my T3 results tomorrow.Thankyou for your help
    • lois56337
      lois56337 Nonita

      Posted

      I have no idea what these things mean.  They have never gone over any of this with me.....  I have a hard enough time getting my TSH checked once a year.

       

    • linda187
      linda187 lois56337

      Posted

      TSH is not sufficient to test for progress or dosing with Graves disease or Hyperthyroidism.  Especially with Graves, your FT3 and FT4 should determine what dose of meds you will be given.  My TSH remained at 0 for 2 years while I was on 10 mg of Methimazole.  Once I added supplements, my antibodies began to lower and my TSH started to rise.
    • lois56337
      lois56337 linda187

      Posted

      Thank you L inda, I will check into this and see what I can find out.  I take .12 mg of levothyroxin daily.  My TSH when last tested was 1.60 I don't even know if that is good or bad.
    • linda187
      linda187 lois56337

      Posted

      Your TSH level is very good.  You should also have Free T3 and Free T4 levels done to see if your T4 is converting to T3 well.
    • lois56337
      lois56337 linda187

      Posted

      I will call and ask about that, to see if it has been done.........  Thank you so much.  I really appreciated all your help with this.
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