i feel about 80 years old

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hi everyone .i was told i had an overactive thyroid about 2months ago.and the worst thing is no one understands.really bad moods swings/tight chest/gasping /for breath /weight/gain/swelling of body/etc /i could go on an on lol.could some one please help me understand my test results please. weather they are mild or serve.im on 30mg carbimzole /40mg propranolol.my free t4 ;31 pmol/L FREE t3 10pmnol/L tsh <0.01ml/L PLEASE HELP .

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  • Posted

    Lucy. I feel for you and know exactly how you're feeling. Glad to know I'm not the only one. I was diagnosed 3 weeks ago after feeling absolutely dreadful for a month   I know the moods are awful to deal with. Usually I'm a placid chilled and very patient person. I hate feeling on edge anxious and argumentative and snappy   I also have mild asthma and the graves is playing havoc with it. Coughing and wheezy and breathless too. I'm on 30 mg carbimazole and have been for 3 weeks  still waits to feel like my usual self but doc says 6-8 weeks for a real difference. So I'm waiting .......   This graves is horrendous. Appt with endo is the end of September !!!!!   
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  • Posted

    Sorry can't help with blood levels and understanding those.  I don't even know mine, GP couldn't understand when I asked if I could have them...said they wouldn't make any sense to me !!!!
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    • Posted

      thankyou for your reply .you sound like me been on tabs for 6wks still a monster lol.go bak 2 in sep see endo.hope you get better soon 
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    • Posted

      Thanks Lucy. Hope you start to improve too.  Judging by the replies , looks like a very long road ahead .....and so many options and treatments but it seems like it takes months and months to feel 'normal' again.   The Facebook page....can anyone tell me what to search for please ? 
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  • Posted

    Hi Lucy,  

    Don't worry, you will get better at understanding your test results!  Normally when you see them, they will have another number in brackets which is the normal range.  My last lot of results had normal ranges of 7-20 for T4, 3.3-5.3 for T3 and 0.35-5 for TSH.  This means that your T3 is 31 when it shouldn't be any higher than 20, your T3 is 10 when it shouldn't be higher than 5.3 and your TSH is much lower than it should be which is normal for an overactive thryoid diagnosis.

    The carbimazole will help but takes ages to kick in and even then it may take much longer for you to start feeling anywhere near normal.  The propranalol is a beta-blocker which is intended to help with some of the symptoms, particularly shakes and rapid heart rate.  These symptoms will generally subside but you won't feel brilliant for ages.  I'm a year down the line from diagnosis and my levels were much higher than yours (my T4 was 65 when I first had blood tests) but I'm getting back to normal and am now only on 5mg of carbimazole and I ditched the propranalol fairly quickly.  

    The only thing I would say is that your doctors will only rely on blood test results to tell them how you're improving.  Most doctors and endocrinologists just don't have anything else to suggest even when you tell them that you're still not feeling well.  The best I can suggest is that you do your own research online (which you've clearly started to do as you've found this forum) and try a few different things to see what works for you.  Many people on here have tried supplements such as L-Carnitine and found that it helps.  I've also experimented with improving my diet and find that I feel much better on a wheat, dairy and sugar free diet.  Even if you can just make small improvments they will help.  Most of all, just listen to your body, don't beat yourself up for not feeling better and allow yourself to have bad days - they will get fewer but it takes time.  Keep looking at this site and ask as many questions as you want.  You will always find someone who has been through the same and just having a support network will help.  No-one who hasn't gone through this will have a clue what you're on about!  

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    • Posted

      Hi please can you tell me where to but the L-carnitine ?  And the dosage ?  I take vitB complex at the moment. Thank you shelley
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    • Posted

      L-Carnitine and Acetyl-L-Carnitine can be found in Health Food Stores. There was a study done by Dr. Salvatore Benvenga of Italy on the benefits of L-Carnitine and Hyperthyroidism. You can google him and find it. I have taken both regular L-Carnitine and Acetyl-L-Carnitine and found the Acetyl-L-Carnitine to be the best. I would not take more than 1,000 mg of Acetyl while you are still on meds. You will have to get blood results done at least once a month on the Acetyl because it improves your blood results so quickly and you have to adjust dosages of either the Carnitine or the medication or both but it works fast. The regular L-Carnitine you can take up to 3,000 mg and it does not affect your TSH as much but both make you feel better. I had to experiment with my dosages. Hyperthyroid patients lose carnitine in their urine and are carnitine deficient. They are also vitamin D deficient so you should also take that. Carnitine is an amino acid thast is naturally found in the body.
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    • Posted

      Thank you so much for the info. So holland and Barrett would be a good place to buy it ?   Also do I have to tell my GP that I will be taking it then if it has such an effect on levels ?   Not sure what my GP would think of it..... Think he is a traditional medicine guy and may not approve.  What if I take it but he doesn't know. ? Shelley. Ps thanks for your help really appreciate it 
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    • Posted

      I told my GP and Endo I was taking it. You will have to watch your levels very closely and try to get blood tests done every 4 to 6 weeks and adjust your dosages. The regular L-Carnitine you don't have to adjust much with. Why don't you start with that at 1,500 mg and then depending on how you feel, add 500 mg of Acetyl-L-Carnitine until your next blood test. You can either find it at Holland and Barrett or you can ask them to order it if they don't have it. Don't be surprised if your docs do not endorse it or know about it. Unfortunately the medical profession is not open to new things if they are not introduced by other docs and despite this study being done, they are not quick to pick up on this. You can always search for the paper by Dr. Salvatore Benvenga on Google and print your references when you tell them you are taking it. Also, avoid any food or drinks with Aspartame in them.
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    • Posted

      Hi Shelley, if you are in the UK you can get it at Holland & Barrett but I found the best price online at a company called Dolphin Fitness.  They do both the regular L-Carnitine and Acetyl L-Carnitine and were very reasonable.
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    • Posted

      Thanks so much for your help. I have just ordered some !! 😄. Hoping for good things to come !!!  Could really do with some pick me up and feel better tabs !!  Do you know how quickly they work ? 
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    • Posted

      Not a miracle cure I'm afraid but I definitely started to feel better in myself within a few days.  Fewer aches and pains and a bit more energy.  Having said that, I was a few months into the Carbimazole treatment by the time I found out about them and tried them but I had still been feeling very tired and not myself.  Worth giving them a try definitely.
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    • Posted

      Very quickly for the Acetyl especially. Even the regular L-Carnitine raised my TSH from less than 0.01 to 0.05 and that was about a month and a half to a 3 month period between my last blood test to the next. But the Acetyl will take effect on your well being immediately and your next blood tests within a month should show improvement. Need to a keep a very close eye and adjust often especially with Acetyl-L-carnitine because it is absorbed so well and crosses the blood-brain barrier. Don't have to keep as close an eye on results with regular L-Carnitine.
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    • Posted

      Thanks very much. Would it be worth taking 1000mg of L-cartinine and 500mg of acetyl cartinine ? Is it ok to mix ? Really appreciate your help and advice 
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    • Posted

      Yes. That's what I am currently taking and I have mixed them and taken them separately so it worked okay with me no matter whether I mixed them or took them alone.
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    • Posted

      Linda, I plan to get on what you suggest after I have my next blood work.  I started mmi 2 weeks ago and don't want other thing in my system that might mask the results. After the results though, I'll review with my doc.  He agrees not to go the route of killing the thyroid.   Glad I have him.  He's my GP...my endo wanted to kill the thyroid right away. 

       

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    • Posted

      That's great that you have a GP you can work with and has your best interests at heart. Sounds like a good plan Nancy!
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