the horrid life of hyperthyroidism ..remedies

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Well, ive read alot of peoples stories for a few years now n thought id write mine to help someone else or just to let them know this is a loooong struggle to deal with alone n where no one understands where you are coming from.

I got over active thyroids (graves disease)  and diabetes when I was 16 and my dad had died, which literally felt as though my heart ripped in half. I'm 21 now and still on medication carbamozile 40mg and propanol 

This disease has damaged my body so much that I think when my hyperthyroidism clears up it will still have the biggest effect on my bones and muscles lately I have had a horrible feeling in my shoulder like it isnt correctly in its socket n falling out which feels like someone is ripping my arm off, my goiter is tight n quite a big bump, I can no longer work as ny heart rate is way too fast even when walkin for 30 seconds I live four flights up in my block no lift which of course makes me want to kill myself just on the second floor.

I cant stand being in sun or heat as when I do my eyes cant open and I get this burning n strained feeling behind my eyes constantly my teeth are getting chipped which I reckon is because my bones are weak and I find it hard to breath these days,  awaiting surgery although they changed ther mind and said they will try radio iodine treatment first. My state of mind is always angry and irritated 

Anyone else feel crap lol? Im pretty sure I think about dying 6 times a day and I cant even explain how I feel mentally anymore. 

Also I have found if you work a fast paced job just let it go fall asleep in the staff room, after a shift put ur legs on the wall so the blood circulates

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  • Posted

    Yazzzza, you need to do your research and take responsibility for your own recovery.  I have posted many many times on this Board about taking supplemental L-Carnitine and/or Acetyl-L-Carnitine which is an amino acid normally present in the body that gets depleted from the muscles with hyperthyroidism.  You can get this in a health food store (the cheapest) or by prescription from your doctor (the most expensive).  Your doctor will not be familiar with this or endorse it but there was a research study done in Italy in 2001 by Dr. Salvatore Benvenga which showed the positive effects for hyperthyroid patients taking L-Carnitine.  Hyperthyroid patients are also defective in Vitamin D and need to supplement with this as well.  You can ask your doctor to test your levels of both Carnitine and vitamin D and I am sure you will find you are deficient in them.  Taking these supplements along with my prescription Methimazole was the key to my recovery from Graves and I was able to decrease my prescription med very soon after starting the L-Carnitine.  I no longer have antibodies.  They usually come in 500 mg tablets.  For L-Carnitine a dose up to 3,500 mg is quite safe and for Acetyl-L-carnitine, the usual dose is 1,000 to 1,500 mg a day.  I took both but I found the Acetyl-L-Carnitine was what normalized my blood tests the most.  For my eyes, my ophthalmologist inserted collagen plugs in my tear ducts in 5 minutes in her office, and that made a significant difference in the dry and irritated eyes.  Everyone I have shared this with on this Board who has tried it have noted significant improvements in their symptoms and most were able to significantly decrease their Carbimazole dose.
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    • Posted

      Thanks Linda for the advice is just kike to ask how you have done your research I havent heard of that and my doctors are really not helpful its more of a 5 min talk about how I feel and nothing changes, yes I am deficient in both of those I havent seen that in shops though where are you from?

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  • Posted

    Yazza, I really feel for you.  I can only hope your situation gets better for you.  I have only been recently diagnosed with hyperthyroidism and in those 3 weeks I have really struggled.  I feel like the walking dead and yet people come and tell me I look good as I have lost a little bit of weight.  I dread bedtimes as I cant sleep anymore.  Stay in touch with this group as it is a great support and there is always someone there to listen. 
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    • Posted

      Yep thats exactly what peo0le say to me loool people have told me they want my tablets because they think the will lose weight taking them, I hope it gets better for you I wouldnt wish it on anyone! Yes I just started this yesterday because I literally dont know anyone with this disease lol
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    • Posted

      Well Yazzzza, I find this quite a solitary condition and many people feel left high and dry with it.  I feel very much alone with it but coming on here always helps. 
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  • Posted

    I live in Canada, have worked for doctors and teaching hospitals for over 30 years and know how to research medical papers.  The first paper I came across on this subject was entitled "Usefulness of L-Carnitine, A Naturally Occurring Peripheral Antagonist of Thyroid Hormone Action, in Iatrogenic Hyperthyroidism:  A randomized, Double-Blind, Placebo-Controlled Clinical Trial."  By Salvatore Benvenga et al.  Published in The Journal of Clinical Endocrinology & Metabolism 86(8):3679-3594, 2001. Copyright 2001 by the Endocrine Society.  He also wrote another one entitled "Effects of L-carnitine on Thyroid Hormone Metabolism and on Physical Exercise Tolerance." published in Horm Metab Res 2005; 37: 1-6.  Though these are a valid studies and published in valid Medical Journals and presented at an Endocrine Conference in the States, most Endocrinologists are not keen to pick up on this or act on it because they don't have to, that's the way that doctors are.  They follow the herd and don't want to be different. From your descriptions, you are a very passive patient and will not get different treatment from your doctors until you take responsibility to educate yourself and become more assertive with your docs.  Even though you might not know how to research medical publications, there is PLENTY of information on the Internet that you can Google about L-Carnitine and Graves.  And the decision to use these supplements is one that you can make for yourself after doing your own research and taking responsibility to make that decision.  I know other UK patients have ordered them thru Health Food Stores in UK so it's not impossible.  I think a lot of people are afraid of doctors and give them all their power.  I know I was like that 30 or 40 years ago when I was just starting to work for them.  I have since learned that doctors are educated mortals, not Gods, though some, not all, of them are arrogant and think they are Gods.  What's more important is what YOU think and learning how to take responsibility for your health.  Then you can create a healthy, working relationship with your doctor to get the best medical care you deserve.
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    • Posted

      You're completely right and im quite an open person but when I go to the doctors my nervousness takes over, my mental state is constantly confused and i can hardly talk for myself but when I do, the numerous doctors I get just write it down and nothig really happens after that I am changing doctors this week anyway because the surgery I am at has a bad reputation but I am going to research L-carnitine and I was wondering if you knew if ther is any relation between breaking teeth n hyperthyroidism?  I have googled it and only peoples personal opinions?  
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    • Posted

      I haven't heard specifically about dental problems with Hyperthyroidism however, when the body is not working properly, all kinds of systems get affected.  Since many hyperthyroid patients also suffer from Vitamin D deficiency, supplementing with Vitamin D might help your bones and teeth.  To become a more empowered patient, you can start with building your own medical file.  Every time you have blood work done, ask the office to fax you a copy or give you a copy.  Here in Canada, you are entitled to your medical records if you request them.  They may charge you for them thought.  My doctor does not charge me to fax any lab results.  You will soon learn what these results mean.  As you take more actions on  your own behalf, you will feel more empowered and that energy will be communicated to your treating physicians. 
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  • Posted

    Like everyone on this forum, I really feel for what you're going through.  As Linda says though, taking responsibility for your own recovery really does help mentally as well as physically.  I have started taking Acetyl L-carnitine and already feel much more like my 'normal' self.  I don't know if you are in the UK but if you are you can get regular L-carnitine from Holland and Barrett or I got mine online from a company called Dolphin Fitness.  I haven't had my bloods checked since I started taking it but I definitely feel better in myself - much less muscular aching and a bit more strength coming back.  

    I know what you mean about doctors not having time to discuss things properly.  Last time I saw my endocrinologist she told me my blood test results were great but, when I said I wasn't really feeling well, she just said "well, there's a lot of viruses going around at the moment" and didn't really offer anything else.  It sounds like you need to do a load of research and, in a way, tell your doctors what you want to happen.  You are obviously suffering, physically and mentally, and thinking about dying 6 times a day is not good.  There is a wealth of information and support on this forum so do use it whenever you need to.

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    • Posted

      Yes! I havent seen it in holland and barrats but have a friend who works ther and will ask if they order it, y3s doctors are not normal I went into my doctors and joked about how I have lots ot things wrong at the moment and she told me we only have time for one. 

      Well thats really good for you, did you have a goiter? Because mine needs to go down allloootttt before changes will happen because the breathing is the hardest thing n my goiter is too tight around my windpipe which has obviously effected my heart

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    • Posted

      I don't have a goiter so I'm lucky in that respect but I do find that it has affected all sorts of things.  My skin was really hypersensitive for a while and my nails have been really brittle.  My heart rate has calmed down now and I no longer have the shakes which I had really badly before I started on the carbimazole.  I still get days where I feel really tired and I get muscular aches and pains although the Acetyl L-carnitine has helped with that.  If you are looking in Holland and Barrett the L-carnitine is in the weight management section with all the protein powders.  I don't know what effect it's supposed to have on weight but it doesn't seem to have made any difference to mine.  I lost quite a lot of weight before I started treatment but it's all come back on and I've struggled not to keep putting it on.  I've stabilised now, still a bit heavier than I'd like to be, but as long as I feel fit and healthy I'm not too worried for now.  Try Dolphin Fitness online as they do L-carnitine and Acetyl L-carnitine and their prices were the most competitive I found.  It's a long hard slog I'm afraid but stick with it and hopefully you'll feel better soon.
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    • Posted

      As your results improve, you can work with your doctor and he/she will lower the carb based on the improvement in your blood work.  Once that happens, I think you will be able to lose weight if you eat sensibly and exercise.  It's the Carb that keeps the weight on.
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  • Posted

    Hi I buy my Acetyl-L-Carnitine and bugleweed from Amazon these 2 with b12 have stopped most of my tiredness I also take 10 mg of Carninmazole and I feel great

    I have been lucky I had no side affects from my overactive thyroid or the Carbinmazole except tiredness

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    • Posted

      Thanks for sharing Patricia.  Glad to hear how well you are doing.  Gives a lot of people on this Board hope.
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  • Posted

    I was diagnosed with Graves Disease 6 years ago.  I opted for a thyroidectomy for the treatment instead of the iodine ablation treatment.  These are the two options to treat Graves Disease, I do not believe it will go away on its own.  It took me about 6 months to get the synthroid medication just right after the surgery and I feel almost normal now.  I think you should see your doctor and then a specialist, an endocrinologist to treat your Graves disease, and get on with your life.  Good Luck.
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