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  • mamabear
      Post count: 484

      Yes I will. I have written it before so i’ll copy and paste it after I find it and then add the new stuff, as soon as I get kids settled down. <img decoding=” title=”Wink” />

        Post count: 484

        I was actually going to write something regarding remission for those who are asking about it. I would like to comment that my last TSH level in 98′ was fine but I hadn’t had it checked till 2001 after I had had the flu and wasn’t feeling well. I was told that I did well because the symptoms I had I had not had for long and I caught it faster then most people would. (it’s because I am a pain and had to know right away so fought to get an appt asap after finding out lol…just me and my bold self!!! LOL)

        Here it is:

        I have Grave’s Disease. Had all symptoms from a very young age but tests never showed it. Finally I got the flu back in 11/2000 and 3 months later my resting pulse was 90 so i went to the dr.. They said TSH was 0.03 and a retest showed 0.01. I found a dr. i didnt like,who automatically said do RAI, i said no. I found a great dr. who said that i have a mild case of Grave’s and to go on propythiouracil(PTU). He felt my thyroid and he said you can barely tell. So i did medicine(PTU 50mgs twice a day) and 3 months later I was back into normal range. I have a tender tummy to begin with so I was a bit icky in my tummy with it but nothing that i"d stop taking it for. And I did have hair loss BUT it was happening before the meds so I don’t contribute that to the PTU although it says that is one of the side effects. I believe that that is a stage of the Graves and regardless of being on ptu or tapazole you will lose some hair either way and the drug companies have to report in "side effects" ALL side effects a patient gets during the use of the drug. I was on that dose from july 01′ – April 02′ when I found out i was pregnant my ENdo tested my TSH and it was almost 4.0 so he took me off and I was fine the entire pregnancy. I always watched about getting sick and knew that a virus was what triggered it so i knew a virus is what i had to stay away from. I was able to get pregnant again right after that with 3rd child and my levels were fine during that pregnancy too.

        So 1/1/05 Me and almost 2 yr old son got sick real bad with Rota virus. my 3rd child was just 5months but she was ok. So anyway 6 weeks later I was heading my towards a Thyroid Storm, well at least my regular dr. says it was a storm but the endo i had to find because the other one retired said "eh no it was fine". All my levels were off really bad and I was studdering and almost wound up in the hospital. He said because i(me) didnt feel I needed beta blockers that i must be fine.

        So anyway 3/05 i found a different ENdocrinologist and went back on PTU,and back into remission shortly after and tapered off the ptu and was on my own in remission for 7months without meds and got pregnant. I was thrilled. TSH stayed normal and was fine though out that pregnancy. But I didn’t like this Endo either and the ENdo I had just left was the only Endo in town and my General dr. said I had to see him due to my Graves and being pregnant. <img decoding=” title=”Sad” />

        Got sick 12/1/06 and again 1/28/07 found out my tsh was just slightly under the normal range. The Endo I had to go back to said ohhhhh wait 6 weeks , i wont treat you right now. So i did and during that time i started to loose my hair and have all the symptoms again. SO 3/22/07 comes and tsh is just a little lower than what it was so its still getting lower. I said when are you going to wait, when i start going into a storm again?! He said he wouldnt treat me because it was only one point from being within range, i was stuttering and hair loss all over again but Endo said because everything else looked good that it must not be my thyroid and I was imagining it. I said, well i said not some very nice words and said goodbye to him and started taking PTU on my own(I had some and I told my General dr.) and saw another Endo. 4 weeks later(it took 4 wks to get an appt) she tested me after i told her what happen and i was back within normal range. she said stay on the dose and i’ll see you in 3 months, you did good! I said cool. This Endo I am still seeing. The Dr. that I did like had another dr. in his practice, so I found out she and another female dr. went into business together so I am with them till they retire which wont be too soon since they are both young!! lol
        I went off the dose and have been within normal range ever since. that was 18months ago.

        I hope I’m not missing anything but that is it in a nutshell I guess. Remember that everyone is different, every side effect is different and every dr. is different. I was sooooooooo very lucky to catch this and have a very blunt nature about me to be able to find a dr. that is willing to treat my symptoms not just a lab number.

        I might never have to worry about Graves turning it’s ugly head my again but I will say that I will always see an Endo yearly for a checkup and my child will always be tested when the time is right. I have become a very good advocate for myself. And I refuse to have any dr. treat me as though I am just a number. I have great General dr’s, wonderful pediatricians for my kids, a great Endo and Obgyn and Podiatrist whom I hunter for for a while. lol

        This is the only body we have, if you’re not comfortable with your dr. find a new one. If you question something then get a 2nd opinion or 3rd or 4th ifyou have too.

        Good luck!!!!

          Post count: 32


          Hi! I’ve read with great interest your statement that you’ve been in remission for 18 months after PTU. Congratulations!! I was wondering if you could share a little of your experience with me on taking the medication. Did you experience any side effects or other problems? How often each day did you have to take it? Is there any advice or words or caution you’d give to someone considering this option?

          Thanks for the help,

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