Newly diagnosed with Grave's 2 wks ago

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on 5mg mmi twice a day and taking a beta blocker.  Feeling better but still not quite myself.  The question I need to answer now is to just stay on the meds and see how hyperthyroism can be managed, or do RAI as my endo suggests.  My GP said he would suggest the meds first.  I've heard so many pros and cons to each, that I'm totally lost.   Can folks offer their experiences with each of the options?  thanks so much for any input.  Probably as you did when first diagnosed, I've searched everywhere to gain more  insight. 

 

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  • Posted

    Hi Nancy,

    It is helpful if you can post your TSH, T3 and T4 results when seeking advice on this Board because its important to know this information in order to know the best course of action to take for the next step. You are on the same dose of mmi as I started on and while I took Propranolol before all my tests were completed, I did not need it after I started on the mmi. My results at start up were TSH less than 0.01, T4 29 and T3 9.8. On 10 mg of mmi my T3 and T4 immediately fell into the middle of the normal range for each but my TSH did not budge for 2 years, until I added 500 mg of Regular L-Carnitine, an amino acid supplement to my treatment and my TSH rose from less than 0.01 to 0.05. There was an article written by Dr. Salvatore Benvenga of Italy on the beneficial use of L-Carnitine for patients suffering from hyperthyroidism. You can Google this article. You can also see previous postings on this Board regarding the use of L-Carntine and Graves. My TSH did not move much after that until I added 1,000 mg of Acetyl-L-Carnitine to my treatment whereupon it rose to 0.70, in the normal range. The Acetyl-L-Carnitine really works fast and is very sensitive to getting results when combined with mmi. However, once the results are in the normal range, the dose requires quite a bit of adjustment to keep your lab results where you want them in the normal range. Also, after my results rose to TSH of 1.7 and then 2.4, I was experiencing rapid heartbeats until I switched from taking the Acetyl-L-Carnitine and mmi together and took the Carnitine in the morning and mmi in the evening. I no longer feel that rapid heartbeat and feel fine. I would definitely avoid RAI or surgery at all costs. I don't think destroying the thryoid gland and replacing with thyroxine is the answer. My Graves antibodies left when I used the Acetyl-L-Carnitine, my lab results all normalized and I feel normal now. I am currently on a dose of 2.5 mg mmi and 1,000 mg of regular L-Carnitine and 500 mg of Acetyl-L-carnitine and I am going to post my lab results from my most recent test when I get them next week but I am feeling good on this regimen. The reason I and others feel good on the Carnitine is because Carnitine is an amino acid normally found in the body which gets depleted from muscles in hyperthyroid patients and adding it back in helps. You get this from health food stores. Your specialist or GP will not have heard of this and not endorse it but many of us are doing great because of it. Please keep us informed about your progress and your symptom resolution.

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  • Posted

    Hi Nancy,

    I'd definitely give the meds a go and see how they suit you before opting for RAI which is irreversible.  Following Linda's advice, I've also been taking an L-carnitine supplement even though my blood levels responded well to the regular medication.  I didn't feel myself on just the meds but the carnitine seems to be helping.  You will find that there are no quick fixes, it's a slow road to recovery so don't expect fast results.  I've also been reading a lot online about treating Graves disease itself rather than just the overactive thyroid which is actually just a symptom.  As it's an auto-immune condition you need to look at your health as a whole and do what you can to support your immune system.  Improving your diet and general health is a good place to start and you'll find a ton of information online.  This board is great for advice and support so check in regularly and take responsibility for your health - only you know what feels normal for you and doctors tend to only go by what your blood tests say.

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  • Posted

    Thanks for the responses.  It sure feels lonely so this site helps.  I am leaning towards the meds and so is my GP so that's good.   Karen, regarding my health, I've always eaten well and I've doneweight training for the past 30 years.  Sure wouldn't know it now since I lost weight, including my muscle tone. 

    Linda, since I'm newly diagnosed, I didn't know to ask for results but I will at my next endo visit. 

     

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    • Posted

      I was also fitter than I had ever been when I was diagnosed Nancy.  I started running a couple of years ago at the age of 42 and was feeling fit and well until suddenly I wasn't.  To go from running 4-6 miles around 3 times a week to barely being able to walk upstairs without dragging myself up on the bannister was a real shock!  I also know that I eat quite healthily (at least more healthily than a lot of people I know!) and I'm not normally prone to illness.  However, I am guilty of eating stuff that I know isn't good for me and I've also found that, if I try to avoid dairy and gluten for a while, I definitely feel better.  I lost quite a lot of weight before I started treatment but have put it all back on plus a bit more.  The medication to calm your thyroid down plays havoc with your metabolism so watching what you eat is pretty important for this reason as well.  As I said, you have to find what works for you.  I tend to find that just feeling that I'm doing something positive makes me feel better but you will have good days and bad days.  Good luck with the treatment and keep us posted.

       

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  • Posted

    Hi Nancy .. Welcome to the board . There is lots of good advice on this board . I have learned a lot and started taking the advice of the knowledgeable members . I too have hyperthyroidism and haven't started treatment yet . They have me under " watchful waiting " . No fun! I have loss lots of weight and muscle tone . I am very weak and have no energy ... I have started the cartinine supplements as Linda has suggested . Hoping for some relief soon smile 

    Hope you feel well soon . 

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  • Posted

    Hello Nancy. 

    How extrem and why remove your thyroid after only 2 weeks? I am amazed you have seen an endo though   I was diagnoised 10 weeks ago and no sign of an appointment. Anyway. I was put on 20mg of carbimazol and propanol initially so I imagin my levels may have been higher than yours. I read none stop for a week about Graves. Bought lots of books. Elaine Moores book on Graves is great. Another How to keep your thyroid healthy, The Immune system recovery plan very well worth a read. Went to a herbalist, nutrionist and started to mediate. My levels came into normal range within a month. All bar my TSH. Which I am hoping after following Linda's advice will start to appear again. I feel better than I have in years. Physically, mentally and emotionally. 

    I am going to keep my thyroid for as long as possible and am aiming for remission with the aid of herbs, suppliments, mediation and diet change,( no gluten, dairy, sugar, alchol, soy, caffeine). It hasn't been as bad as it's sounds and the benifits are well worth it espicially if I can get remisson and keep my thyroid. 

    Good luck. BB

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  • Posted

    BB... I didn't have my thyroid removed.  I've only just been diagnosed.  On methimazole now and waiting to see how that goes.  

    Everyone I'm going to take your suggestions to my doc.  He's receptive to info like this.  Thanks! !!

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    • Posted

      Oh yes Nancy I am sorry I did not make myself clear. I am a working mum and rush my posts I did realise that. Just seems very early days for Drs to suggest  RAI. Great that you have an open minded Dr though. 

      Good luck BB

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