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My Endocrinologist said that my Thyroid may correct itself and I will need little to no medicine?

Posted , 7 users are following.

ashley51986
ashley51986

Recently I was hospitlixed due to Tachycardia. While I was there I told them about how I had Graves disease, how I was diagnosed at age 12, my Thyroid spikes in the summer, and how of I am 15 now. 

I was taking a pretty low amount of Thyroid medication 50mg of Levothyroxine 5 days a week and 75mg 2 days a week. This was by my Endocrinolgist's orders. I didn't kmow that I became Hyper, I felt Hypo on 50mg and I think looking back I was becoming Hyper on that too. 

They only tested my FT4 and TSH at the hospital. My FT4 came back as 4.07 and my TSH was 0.1. Literally the ER doctor came in and said, "Well we tested your TSH and it came back as 0.1". I thought she was crazy and asked her to test some other things, she said Free T4? I said yeah. 

My Endocrinolgist I think does T3, Free T3, Reverse T3, T4, Reverse T4, Free T4, TSH, and Thyroid Antibodies. Just my guess, but when I started treatment 3 years ago he said there was a 20% chance of my Graves disease ressolving itself because of my age. He's in his mid 80's and my mom and ER doctor recommends I find someone else, but does he have a point? 

I was also getting Hyper on 50mg of Levothyoxine 6 days a week. 

0 likes, 13 replies

13 Replies

  • ashley51986
    ashley51986

    Posted

    After my diagnosis I felt as if I was a specimen. It made me want to research all sorts of medical terms. In my 3 years of daily research I have never found a thing about someone's Graves disease ressolving itself. He said even if this did happen I still would need my blood watched at least every 4 months, but I would be on no medication. He said this would happen at age 15. 

    The only way my head can wrap my mind around this outcome is if I start becoming Hyper on such little amounts of Levothyroxine. Which I am. My great Aunt takes 112-125 mg of Levothyorxine. 

    I go see my Endo Tuesday. They told me to lay off of the Levothyorxine, stop taking it completely and I feel FINE. It has almost been 3 days. I am also o Propanolol to contorl my heart rate. Let me say SO MUCH BETTER THAN ATENOL! smile

  • linda187
    linda187 ashley51986

    Posted

    If you have Graves, why were you taking Levothyroxine?  Did you have radiation or surgery?
    • linda187
      linda187 ashley51986

      Posted

      So if you took Tapazole, you were hyperthyroid.  But if you took Levothyroxine, you were hypothyroid?  Usually the swings like that happen to people who have Hashimoto's because they are extremely sensitive to thyroid and antithyroid drugs.  Do  you have Hashimoto's?
    • ashley51986
      ashley51986 linda187

      Posted

      I took it starting in the middle fo 2012 and in late 2014 he took me off of Tapazole. He said it was the Tapazole making me too Hypo. So I lived off of 6 days of 50mg a weeek no Tapazole for about 7 months when I saw him again. I thought I was Hypo so he moved me up on the medicine. I don't think I have Hashi's because they only told me that I have Graves'. The ER definately thought I was on too much medicine, but what I don't understand is that I was on 50mg 5 days and 75 2 days. I have been off my Levothroxine for 3 days now by the order of the ER and I feel fine. No Hyper signs or Hypo, but I seem to miss Hyper signs probably because my body lived 3 years Hyper pre treatment. 
  • linda187
    linda187 ashley51986

    Posted

    For most Graves patients, when they start on Tapazole, their values are monitored regularly and their medication dose adjusted.  I don't know of any purely Graves patients that have gone hypo on this regimen unless they were taking other things like Acetyl-L-Carnitine.  I do know of patients with both Graves and Hashi's or Hashimoto's alone who do go hypo very quickly because Hashimoto patients are extremely sensitive to both thyroid blocking drugs like Tapazole and thyroid replacement drugs like levothyroxine.  If you did go hypo on the Tapzole, then stopping it alone should have regulated your values.  There is something else going on here and you need to ask your Endo to check you for Hashimoto's. 
  • victoria08838
    victoria08838 ashley51986

    Posted

    My son had the same problem as you from the age of about 12 to 15yrs. he was diagnosed with Grave's disease and was given Carbimazole to knock his thyroid function out and Thyroxine to build his levels up to normal. This treatment was queried by our pharmacist on more than one occasion

    What I can say to you is that YES, it is possible to go into spontaneous remission, my son is living proof of this. He had 2 months of being weaned off all medication, then had to go for 6 weekly blood tests. After 3 consequtive good blood results he was declared to be in remission. He had a follow up blood test a year later and he was still fine. He is now 25yrs old and has remained in remission. We were told it could come back again at any time but fingers crossed, nothing so far.

    • christine57219
      christine57219 victoria08838

      Posted

      Hi Victoria, just read with interest your message to ashley.  It's the part that says that your son was weaned off all his medication over a period of 2 months?  Two weeks ago my GP told me to stop taking my medications of 75 micrograms L-thyroxine and 40 mgs of Carbimazole  (i.e. no weaning period).  I had been on block and replace for just over 18 months.  For the first 3/4 days after I stopped the meds I felt fine, since then I feel absolutely terrible - I have the rapid heart rate, anxiety etc etc.  When I was first diagnosed in summer of 2013 and was seeing the Endo, he gave me a "Patient Information Sheet" with the title "Hyperthyroidism (Overactive Thyroid) - due to Graves' Disease" - so I am assuming that I have Graves' Disease and yet I have read on here that patients with Graves' Disease shouldn't be taking L-thyroxine?  I'm finding it all extremely difficult to understand and reading so much from thyroid patients who seem to disagree so much on tests, medications, doctors not really knowing what they are doing etc etc is making me even more anxious.  As I have said, my GP suggested I stop all meds 2 weeks ago and I have a blood test in 2 weeks time - I'm feeling so bad, just like I did before I was diagnosed that I am now considering whether or not to start taking my Carbimazole meds again.  Any answers? Anyone?
    • victoria08838
      victoria08838 christine57219

      Posted

      Firstly, I would go back to your doctor ASAP.......you could be experiencing a thyroid storm which is what can happen if medications are stopped suddenly. 

      Yes, it is usaul for a Grave's disease patient to be given Levothyroxine and carbimazole, My son was given this combination.  He was seen by a specialist at Kings College Hospital in London. He was quite clear that my son should be weaned off Carbimazole over 2 to 3 months with regular blood tests.

      He reduced the carbimazole BY 10mg a day for a 3 week period, followed by a blood test, each time the blood test result was normal we reduced it by a further 10mg for a further 3 weeks. 

      Very few GP's know how to treat Graves disease. 

      I hope this helps. Please come back to me if there is more you'd like to know. But please go to your doctor ASAP.... a thyroid storm is a bad thing and will cause the symptoms you describe. 

    • christine57219
      christine57219 victoria08838

      Posted

      Many thanks for your message and advice Victoria.  I feel certain that you are correct about a thyroid storm - yesterday my heart rate was extremely bad and scared me into taking my Carbimazole 40 mgs to try and ease my symptoms. I feel very slightly improved today but will be making an appointment to see a GP in the morning (we have to ring our medical centre at 8.30am to get an appointment for that day - this morning I missed that deadline).  Looking back at your message to Ashley I see you stated that your pharmacist queried the treatment for your son, I am presuming that you mean they queried the two medications (L-thyroxine AND Carbimazole)?  I was questioned once by the pharmacist why I was taking those 2 meds.  My answer was that these were the meds prescribed by my GP, the pharmacist seemed puzzled !  However, who am I to question my GP - but I WILL be asking many questions tomorrow. You don't mention your son being weaned off the thyroxine along with the Carbimazole?  There's something else I don't understand regarding Hyperthyroidism/Graves disease and that is that I was sometimes still having a few symptoms of anxiety, extreme tiredness, had caught every cold/flu that was going and felt extremely cold all the time.  The GP said that these were just basically symptoms of "life" and stopped the meds.  The last time I felt extremely cold all the time was an occasion when I had gone from HYPER to HYPO and the dosage of Carbimazole was changed.  When I was first diagnosed a little over 2 years ago I had heat intolerance in an extreme way.   Finally, was your son on Carbimazole and L-thyroxine for 3 years ?  If so, I would also prefer to stay on the meds for another year or at least have my meds reduced over a period of time rather than stopped suddenly as they were 17 days ago and gone through this.  Thank you Victoria.
    • victoria08838
      victoria08838 christine57219

      Posted

      I can't remember what we did about the thyroxine and having gone back through the paperwork there isn't any mention of it in the letters so I can't tell you what we did about that.

      The symptoms of extreme tiredness, anxiety, feeling cold etc are all symptoms my son had. He was sleeping 22 hours out of 24 hrs at one point. The consultant said my son would be feeeling as though he'd run a marathon when he woke up. It was a horrendous time.

      Yes, my son was only on his medications for about 3 years, the consultant had said that in his experience boys of his age ie going through puberty, went into spontaneous remission after about 2 years. We had to remind him of that and ask for my son to be able to try stopping his medications  and as I say the consultant said the carbimazole had to be reduced slowly over about 3 months. 

      I hope you've seen your doctor now and he's listening to what you're saying. Good luck Victoria 

  • linda187
    linda187 ashley51986

    Posted

    I belong to another Thyroid Board.  I learned a lot there.  There are 3 ways docs treat Graves and hyperthyroidism.  The first way (which is very common in England but not so much in North America) is the Block and Replace regimen where high doses of Carbimazole or Methimazole are given along with Levothyroxine.  The second way is by taking a low dose of Methimazole (10 mg or less) over a long period of time.  The 3rd way is by doing what is called Add Back therapy, which is similar to block and replace but much lower doses of both meds, i.e. 5 mg or less of methimazole and 50 mg of levothyroxine.  This latter method was discovered at the Cleveland Clinic in Cleveland, Ohio.  I was given 10 mg of Methimazole and stayed on that for 2 years with my FT3 and FT4 normalizing but my TSH remaining at less than 0.001 until I added supplements like vitamin D3, 1,000 to 5,000 IU per day, Reglar L-Carnitine 3,000 mg, Acetyl-L-Carnitine 1,000 mg (which really affected all my thyroid values and which required frequent monitoring and adjustment of both the Acetyl and my methimazole).  Today I am on 2.5 mg of Methimazole and all my thyroid antibodies are within the normal range.  I could stop the Methimazole at any time.  Patients should not stop their antithyroid meds even if they are euthyroid (normal thyroid blood tests) unless blood tests show that their antibodies have normalized.
    • jean26847
      jean26847 linda187

      Posted

      Hello Linda,

      I just been diagnosed with hyperthyroidism based on suppressed TSH .. I am extremely frightened... I know it’s been a while you were active at the site... while I am hopeful, that your issues have been resolved, I am also hopeful that I will be hearing back from you.

      Thank you !

      PS. I am willing to share my telephone number with you, if either you would call me or you will provide your number.

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