Hyperthyroid diagnosed last Aug 2015

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Dr started me on propranolol 10mgs and carbamizol 40mgs apparently thyroid 4times higher than what it should be,eventually palpitations settled and carbamizol stoopped meanwhile I started my self on lots of vitamins.dr wouldn't refer me to a Endo and I feel I'm trying the best I can anxirty  tt

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  • Posted

    Didn't get finished anxiety has returned and hunger.when I go to GP do I ask him to check my TFT ts3ants4 and my anti iodized.i can't get work all done as I'm racing but then just feel pains in legs an then bedtime can't sleep please advise

     

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    • Posted

      Sorry Rhoda I missed the end of your message.

      I have all those signs and symptoms hence being up at this unearthly hour.

      IMO I feel that you would be best if went back to your GP and asked for the full range of thyroid function tests to be repeated.

      If necessary you may have to have the blood tests done privately.

      I understand that t is best to have the blood tests done when your symptoms are at their worse. The tsh can vary throughout the day. Barbara may have more info on this.

      Take care

       

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  • Posted

    Sorry to hear this Rhoda. Did the dr exolain the reasons for not referring yu to an endocrinologist?

    I think that you are entitled to a second opinion at specialist level.

     

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    • Posted

      he said only time you needed to go is if you needed iodine got treated with carbamizole and propranolol and it settled but appears to be starting again,full of energy then exhausted but can't sleep severe muscle pains in legs and slight loss of hair just want to know to get TFT with t3and t4 but also can I ask for antibodies
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    • Posted

      IMHO I twonder why the dr did not check for any thyroid antibodies?

      I had my mine checked and they were positive. However that doesn't mean yours will be.

      I exp[eect the dr will check those if you ask hhim or her .

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    • Posted

      I think you definitely should be referred to an Endo for mangement.  I was and it took two months for the complete work up, i.e. uptake test, lab tests including antibody testing, thyroid ultrasound before I was started on meds.  My General Practitioner managed in between my Endo visits and did lab tests in between at my request.  I would never just stop antithyroid meds abruptly like that, I would lower them slowly and even now though I am on a low dose every other day, I fear stopping altogether would cause a rebound effect.  Also if you have autoimmune diagnosis, your antibodies have to normalize before stopping meds.  In North America, there is a Medical centre that introduced something called Add Back therapy where when your levels normalize, they put you on a very low dose of antithyroid meds like Methimazole and a very low dose of thyroid replacement meds like levothyroxine at the same time.  Different than Block and Replace method used in England because the dosages are extremely low. This apparently has helped people stay in remission.  I never did this though.
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  • Posted

    I was diagnosed with Graves disease in 2007, started on Methimazole 10 mg once a day.  My FT3 and FT4 normalized immediately but my TSH would not budge from less than 0.001 for two years.  Then I read a research paper published by an Italian Endocrinologist about the benefit of hyperthyroid patients using Regular L-Carnitine 3,000 to 4,000 mg a day.  I tried this and my TSH rose to 0.12.  Then I added vitamin D, 1,000 IU daily and Magnesium 200 mg daily and tried Acetyl-L-Carnitine and really brought my TSH right up into the normal range.  My Endo slowly decreased my Methimazole as my values normalized.  I am currently on 2.5 mg every other day.  My antibodies have normalized as well.  He said he does not stop the Methimazole when values normalize unless the antibodies also normalize.  I also read that it was important to avoid Aspartame, the artificial sweetener found in pop and other foods.
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    • Posted

      Gi Linda

      Mind my asking if your signs and symptoms improved?

      Also do you have any cardiac issues at all?

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    • Posted

      Hi there - Been diagnosed with Gaves 5 weeks ago and started 10mg Cabrimazole twice a day - Just did a blood test and my TSH is still super low - Nothing has changed! Symptoms are better appart from sleeping...

      I have started L-Carnitine twice a day - Do you remember how long it take to increase your TSH when you started L-Carnitine??

      Many thanks :-)

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    • Posted

      At diagnosis, I had palpitations before starting on Methimazole and was given Propranol.  But it drops my blood pressure too low and after starting the Methimazole, I did not need the Propranolol.  My signs and symptoms definitely improved after starting the Regular L-Carnitine and vitamin D.  With the Acetyl-L-Carnitine, however, my labs headed toward hypo very quickly and I had to stop taking it when my TSH hit 1.5, then 2.5 as I had a lot of cardiac symptoms then.  I had a mild abnormality on echocardiogram but cardiologist said this is common in post-menopausal women and I have had no cardiac symptoms since stopping the Acetyl.  I had to make a lot of adjustments to my meds dose or Acetyl dose very frequently after starting the supplements.  Usually my TSH would drop after stopping it but it did this over a long period of time, never went below the normal value.  It dropped from 2.5 to 0.70 and then about 6 or 7 months after I stopped the Acetyl, it  swung around again to 1.5 or so and stayed there.  My Frees are in mid-range.  I asked my echo what happened there and he said he thinks it burned itself out.  While I definitely felt better when I added supplements, it is extremely touchy with Acetyl.  The research paper was on the Regular L-Carnitine and I had no problem with that symptom wise or lab values wise but thyroid is extremely sensitive to the Acetyl-L-Carnitine and requires extremely close monitoring and adjustments because Acetyl crosses the blood-brain barrier.  I was tested before I started on the supplements and I was deficient in Carnitine, vitamin D and at bottom of range in Magnesium and symptoms definitely improved on these.  I currently take the Regular L-Carnitine on the off days that I don't take my 2.5 Methimazole dose and still take vitamin D and Magnesium.  My symptoms, even my dry eyes have improved a lot.
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    • Posted

      On Regular L-Carnitine, 3,000 mg daily along with Vitamin D, 1,000 IU daily my TSH rose slightly from less than 0.001 to 0.12.  When I added a low dose Acetyl-L-Carnitine 500 mg and then 250 mg it shot right up there in about 4 weeks to 0.70 and kept climbing.  I was on meds alone for the first two years and my TSH remained at essentially 0 which is common with Graves patients.  It takes a long time for TSH to rise but my Free T3 and Free T4 normalized immediately upon taking Methimazole.  Also most patients will have a rise in their TSH at least after a year on meds and I did not so I really did a lot of research and the addition of supplements really helped me.  But again I caution anyone who uses Acetyl-L-Carnitine.  Your labs need to be done more often and meds and Acetyl dosages adjusted frequently or even stopped according to labs and symptoms.
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    • Posted

      Linda

      Is it safe to take Regular L - Carnitine if having cardiac issues such as minor arrhthymias ,border line first degree heart block , a wide qrs and left ventricular hypertrophy not forgetting Long QT syndrome?

      Thanks in advance 

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    • Posted

      If I were you, I would ask my Cardiologist that question.  I know there is an Integrative cardiologist in Florida I believe who uses both medical and supplements and for people without heart issues they recommend using Carnitine for good heart health but with your issues, I would clear it with your cardiologist.  I would not take Acetyl Carnitine at all but ask him or her about the use of Reglar L-Carnitine for people with your heart conditions.
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    • Posted

      Thanks Linda

      My endo cannot get a definitive reply tto the safety or otherwise of prescribing any thyroid meds!!

      I also have nodules which are non cancerous. I am at the end of my tether with all this uncertainty plus the signs and symptoms. My tsh is 0.16, TPOAS 30, T4 17.

      I take Vit D3 and calcium for low vit D.

      I am thinking of buying Regular L-Carnitine myself and going it aalone and relying on private blood testing.  

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    • Posted

      Linda Meant to say that endo cannot get a definite reply from the cardiologist etc.....
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    • Posted

      Hi Linda, thanks so much for your help. I will stick to regular L-carnitine for now and see how I go - might add vitamine D as well. My endo is on holiday for the month so hard to get hold of her or a colleague!

      Thanks a lot for your help - much appreciated!

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    • Posted

      Hi Linda,

      It was good guideance from you how to manage TSH and you are back to normal. I will start try vitamin D and Magnesium in addtion of my crabmidzole.

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