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in reply to: Suggestions for burning/dry mouth #1180075

sorry to add more info….my endocrinologist told me that I am both hyper and hypo and that graves only shows its ugly face during certain times of your life, puberty, pregnancy and menopause and that all of my aches/pains, mood changes, need for sugar and carbs (which is not like me, she checks me for diabetes all the time always negative) are not thyroid related!!! I have researched through all of the major universities in the states (Tufts, Berkley, Michigan, John Hopkins as well as the endo. journal articles and they all tell me I am right (and my eye surgeon agrees) I never had graves I had a transient hyper attack due to the iodine used for my hysterectomy. I have been kept hyper since 2002 (four of those years I needed to be as my husband was dying from cancer).

Sorry I vented too much. I am angry, hurt and have lost my relationship with my sons’. They have told me not to bother my family and friends with this problem, deal with it!

Marg

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in reply to: Suggestions for burning/dry mouth #1180074

Thanks everyone for the advice. I have already looked at the SS site.

My endocrinologist told me that my thyroid is now totally inactive because of 2 radioactive iodine treatments. I have CBC, B12, ferrous TSH free T3 and Free T4 done every month. I keep copies. When I came down with an odd ‘menopause type’ problem I was sent to so many specialist that all had a different opinion (one actually wanted to test me for cancer). The physiotherapist I go to has told me that my muscle weakness is causing my pain (and as I mentioned I am too high right now and my upper leg strength is poor). Lucky I found her as she has helped me more than the specialists. Originally I was diagnosed with Graves after a hysterectomy, the Dr. only tested TSH and T4 total. After a 15 minute apt. I was told I had graves and put on PTU’s. I got really sick from the tapazole and was refused an appointment for re evaluation so my GP sent me on to anther specialist. A uptake test was ordered and I have a copy of the results, my thyroid did not take up the majority of the iodine, but the Dr. said I had graves and ordered RI31 without prescribing prednisone for my eyes (the first Dr. said my eyes were bad, the second said they were fine) two months later I was put on .175 synthroid and 50 mg. of atenenol . The atenenol blocked the heart irregularities with such a high dose (I am currently reducing to .1 as .112 is too high). I recently requested all antibody tests including a TSI which is fairly expensive in Canada. All tests are negative for graves. I have had three ANA tests done all negative, SS test negative all other blood work normal. The only thing out of wack is thyroid levels. I was told that my TSH has to be suppressed to make me feel better so that the T4 and T3 (free) values will come up. I am tired of trying this theory out…anxiety/panic attacks just to go out for a walk with my dog. I have never been able to take high doses of any medications. Right now I am using a small part of an estrogen patch to block some of my thyroid function so that I can function! Also it is helping my dry mouth, it is not as bad today. I also have increased my fluids because of the frequent urination and bowel problems.
I have seen my eye surgeon and he would like to review all of the medical records from the first two Dr.’s. He has told me that 1 in 20 people have eye problems because of being hyper (and not having graves). He has told me I am that one!! Sorry for venting but I have been going through the mood swings (depression too, which I unusual for me) I have another eye surgery (corrective as well as a biopsy this summer. I lucked out finding such a wonderful eye surgeon. I did end up with glaucoma because of the OD.
I appreciate all comments and feedback. I will be seeing my GP on Wed and think I need to find a new endocrinologist.
Marg

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in reply to: doctor didnt tell me #1180049

Hi

I have been reading about burning mouth (dryness) and hyperthyroidism. I know that I am too high right now and my mouth and gums are extremely sore. Does anyone else suffer with this symptom ( I know I have several others like everyone else), and any suggestions for self help? I am going through a dose reduction (week 2 this week).

Marg

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in reply to: Orbital decompression surgery and headaches #1179765

Hi,

I had OD in 2007 and had some swelling around my sinus area (the surgeon opened the area on the outside of my eyes not nasal area). I did have to take a short course of prednisone to help the swelling of one eye. I did not have any headaches just a full feeling if that makes any sense.

Marg

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in reply to: Eyelid surgery scheduled #1180043

Hi,

I have had the decompression done as well (2007) and a couple of lid surgeries. I am going to have some more cosmetic surgery done this year (an age thing). The eye lid surgery is not painful at all, it will just look like you were in a fight for about a week (bruises). I was supposed to have surgery next week but cancelled as my thyroid level is too high right now.

Marg

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in reply to: Anyone else experience all this, or am i just a baby? #1177800

Hi,
It sounds like 57 is a ‘magic’ number. I was ‘diagnosed’ with graves in 2002 and have only had two years of stability. I insisted on antibody tests this year and all tests including TSI are negative (not graves)… I went through radioactive iodine twice and now I know my dose is way too high (I need estrogen post menopause) but it blocks thyroid. Right now I am using it to block some of the hyper problems, anxiety burning mouth hair changes itchy skin and of course my eyes… I was hyper for so long in the beginning that my eyes were constantly swollen. One Dr. did not see lag but another one did ??? I have had orbit decompression done and three eyelid surgeries, All of the eye surgeries were not painful…just a lot of explaining when I was out and about. I started the reduction in dose a week ago so I have to always remember to count back three weeks and the dose I was taking then is impacting me now. I was on .1 synthroid two years ago but when estrogen was prescribed (and far too much) I became very hypothyroid….I wish I could sleep like that now!!
No one can describe how this feels if they have never gone through it. I am hoping that in two weeks I will be back to myself.
Does anyone else have the burning mouth problem, this cropped up last week. I went to the dentist and had my teeth cleaned but all of my teeth are red and on fire like my tongue.
Marg

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in reply to: Just need to vent…in other words, at my wit’s end… #1179915

Hi Becky,

Know that you are not alone. I have also been struggling to find the ‘sweet spot’. My dose has been changed so many times in the past two years that I have kept a chart of what dose, blood work results and how I felt at the time. My problem seems to be that I need estrogen for post menopause problems. I have found out that estrogen blocks thyroid receptors which means if my dose is not increased by at least 30% I become hypothyroid (big time)….sleep all day and barely enough energy to feed myself. Then the Dr. changes my dose and I go way too high very fast, panic attacks/ anxiety and insomnia. Right now I have some hypo and some hyper symptoms. Dry mouth so bad that my teeth hurt and I was just at the dentist last week. So again I have to get rid of the patch and try to go with out the estrogen. I had to drop my dose as I was literally going crazy, afraid to leave my house to walk my dog and driving my friends crazy. My children will not help me..I was told not to bother family or friends…learn to deal with it yourself.

Now I find out that all of my antibody tests were negative so I probably never had graves to begin with!!!!!
Marg

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in reply to: lab work question #1179799

Thanks Kimberly for responding…I am fairly sure that I was misdiagnosed. The first Dr. I saw only did a TSH and T4 blood test and after a 15 minute appointment was sent home with tapazole script and two pamphlets. I was refused follow up appointments when I became very ill (allergic to the tapazole). The second Dr. ordered an uptake test that said there was only mild to moderate involvement but was told I had to have radioactive iodine which impacted my eyes (I have had four surgeries). The Dr. I go to now ordered more radioactive iodine and now I am hypothyroid. I am struggling with doses (as I require estrogen which blocks receptors). I insisted on the antibody tests as I have to know that it is Graves. Sorry for venting but I have been through an awful lot over the past two years. Apparently I am now hypo and hyper?? (my endocrinologist told me this…)
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in reply to: lab work question #1179797

Hi Kimberly

A quick question for you. I have had three antibody tests done (including TSI) all were negative. I also had an ANA test done which was negative. Can hyperthyroidism be transient. Meaning can it come on because of the excess amount iodine used for abdominal surgery?

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in reply to: Question about TSH fluctuation/Synthroid post RAI #1179813

I am new to this forum but like most not new to Graves. I was diagnosed in 2002 and have had RIA twice and been on several different doses of synthroid in the past two years to try to stabilize things. my TSH is suppressed <.005 Free T4 14.8 and Free T3 4.7. I spoke to my endocrinologist about a reduction in dose as I am experiencing symptoms which are very confusing, Hypo and hyper...apparently there is a lag (which was not mentioned to me two years ago when this all started) so I am in a catch 22. Also to add insult to... I require estrogen for post menopausal symptoms. After reading all of the prescribing information and contacting the pharmaceutical companies I require additional synthroid as estrogen is the dominant hormone. Progersterone is not prescribed (which supports thyroid) if you have already had a hysterectomy. My question to everyone... will my TSH level come back up? I am going to start a reduction to .112 3 days a week and .1 4 days. I have been on .112 7 days a week and experienced the panic/anxiety et al problems. I have also had four surgerys on my eyes (including orbit decompression).... I do want to find my calm sweet spot. Before all this started I was high normal with TSH.78 FT4 16.5 FT3 3.8 and felt great!!! Wish I were there again. Apparently it takes 1-10 years to kill off all the thyroid cells I guess I have hit that spot!! Marg

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