Overactive for three years - no resolution yet - very annoying - any advice??

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Hi All,

This is my first post, never been on a forum before so I would be very happy with any advice, I was diagnosed as overactive with graves disease three years ago, bold me I didnt take my meds properly, was supposed to take 40mg of neomercazole I didnt take nay for months thought it would just go away! Didnt make appointments to my endocrinoligist either due to work commitments so when I see the lovely goitre appear in my neck and my symptoms of being very hot and clammy, wet hair on the back of my neck, bad tremors and sore eyes I said i better come out of the fog and attend the endocrinoligist. After getting given out to for about a half hour first before being told to take 60mg daily of neomercazole, no messing, I did, the tremors alleviated, the sweating stopped, of course the goitre remained but started to feel generally better. Neomercazole were taken off the market and its been a disaster since. On carbizamole four 5mg, 3 times a day, its annoying but needs must. trmors came back slightly in my hands and knees, want to rub my eyes more they look sore and portrude slightly, having lost weight which i needed to happen, I have gained over a stone since last visit on March 27th, so on 60mg of carbizamole and its up weight, feeling irritable all the time and snappy which isnt me at all, there are days where i sleep all night and wake up not able to open my eyes and barely functioning for the day, I honestly felt better when I wasnt taking any medication, does that sound strange or what?? Next visit in July I dont think the goitre is as portruding or am I just used to seeing and feeling it, I just feel yuck, my left eye hops regularly I just wish it would go away! How does this happen in the first place! Nobody in my family has it, I feel low energy and low mood, I heard if you drink green veg juice it is good for mood swings and reducing the goitre any truth in this do ye think? Please help! I have only just turned 40 and hopes of that longed for baby dissapearing from me neutral

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  • Posted

    Hang on in there- thyroid disease is a rough road !!! The Carb is wicked stuff and has so many side effects including serious mood issues. That said hyperthyroidism causes nerves, emotional instability and irritability too. You need to get it under control - the eye disease Is a nightmare. Stick with your Carb just now but try L Carnitine ( buy chemist/online ) It works very well. Ideal dose is 2000-4000mg. I take 4500mg daily and am pretty much symptom free without any meds. 200 mg of selenium helps the auto immune aspect of graves as does a paleo type diet. Gluten free ! I am well for the first time in almost 4 years. Not perfect - it's still there but I feel well physically and mentally. Lots of good info on these sites - we've all got the t shirts !!
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  • Posted

    Thank you linnet2012 it is definitely wicked stuff! I n the last two weeks i have been getting dizzy spells, that would stop oyu in your tracks, this is my first time experiencing them, when i lay my head at night, i have to get up very very slow in the morning, I didnt bother going tot he doctor as I am sure again all side affects. I see a lot of women here are on the l-Carnitine, would it be okay to take alongside the 60mg of carbizamole or wait until i am eventually off the carb? Yes i am also gluten free as around the time i was diagnosed my blood had a high reading of coeliac, my doctor thinks they are connected, I am not a serious one though thankfully where I have to read labels thankfully! Your post sounds great I feel bit better in myself already!
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  • Posted

    You do not have to be off the Carb to start the L-Carnitine but you will find that your thyroid blood levels will improve and you will be lowering the dose of Carb according to your doctor's instructions.  Your doc will recommend this according to the blood work improvements you demonstrate.  You need to work closely with your doctor on this by keeping regular appointments at least every 3 months and having blood work done each time and asking for a copy of the results.  In fact, you should get a copy of any blood work results you have had done so far.  Your doctor will not know about the L-Carnitine or recommend your using it but you can work closely with him/her on everything else.  I started on regular L-Carnitine but found that Acetyl-L-Carnitine improved my TSH especially better than the regular so I took both initially.  You can take both.  I would recommend 1,000 mg of regular L-Carnitine and 1,000 mg of Acetyl-L-carnitine to start.  L-Carnitine is an amino acid that is naturally present in your body but gets depleted from your muscles when you have hyperthyroidism, so replacing it makes sense.   Never, never go without treatment for hyperthyroidism as thyroid storms can be life-threatening.  If you decide to take the L-Carnitine, please keep me posted on your progress.  I am not in England but other people on this board have obtained the Carnitines through health food stores.  It is also available by prescription if you have a good relationship with your doctor and you ask and he/she is agreeable to prescribe it.  Everyone I know on this Board who has taken it has improved.  So Good Luck to you!
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  • Posted

    Additoinally you should see an opthalmologist abour your eyes.  I got collagen plugs inserted into my tear ducts to block them and keep the moisure in my eyes.  Took about 5 minutes in her office and I get them replaced every 6 months.  I could have had silicone ones put in permanently but I am not comfortable with silicone as opposed to collagen which is more natural.
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  • Posted

    Also forgot to mention, do not drink any soft drinks with Aspartame in them or any other foods sweetened with this artificial sweetener.  It aggravates this thyroid problem.
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  • Posted

    I buy my L Carnitine on eBay from seller called hemansupple. The capsules are each 1500mg LCarnitine. It's the best quality product I have used so far.
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  • Posted

    Really good point Linda - I ditched fizzy drinks totally and if I have a lapse I can actually feel the effects quite clearly. Have learned to listen to my body re triggers !
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  • Posted

    One more point.  Most Graves patients are also found to be vitamin D deficient.  So adding Vitamin D to your supplements is a good idea.  I prefer the Gel caps myself.
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  • Posted

    Thanks a million for all your advice, I will definitely ask my doctor thursday when i am getting blood work done, it will be my three month checkup, if she will prescribe the L Carnitine to me otherwise I will try ebay linnet2012, thank ye again, no you are right Linda I will never not take my meds again, my symptoms are worse taking teh dosage for sure, today I see how thin my hair has got around teh front scalp especially which the hairdresser confirmed and again the dizzy spells are not great but I will do as I am told until my appointment witht he Endocrinologist in July and take it from there, I feel if these symptoms remain I will enquire re iodine treatment or surgery as I couldnt continue like this, to start though I will get the L Carnitine and will let ye know how I am getting on smile
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    • Posted

      Yes.  Please keep us posted.  You may need to adjust the L-Carnitine up or down but that comes later.  For now, just trying it and noticing whether anything improves is the first step.  If you are like the rest of us, I feel you will improve greatly.  All the best!

      Linda

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  • Posted

    Hi if had over and under active had the thyroid removed well 3 of them I have one left.

    Now its gone back to me putting weight on loosening blood angina am waiting to have stent my bones recrumbling am on 18 calcium tablets a day plus 350 for m thyroid the can sort my out it dong m head in

    But all I get is we don't no were your calcium going twits

    Am now on mad pills and just wanted to no whatelsecan I do am on86 tablets a day its a joke

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