Just been diagnosed with overactive thyroid can any help with me levels please?

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Hi,

I was dianosed on Tuesday and dr told me I had high levels of T3 & T4, can anyone help in telling me just how high these are in comparison to other please?

My T3 is 30.8 and T4 is 58.2.

The drs have worried me slightly as they are requesting the specialist at the hospital see me urgently and its been a little bit like information overload, I only had the blood test on Monday and got and urgent call to the hospital Tues evening to collect some medication as I was required start it asap

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  • Posted

    I was lucky to be diagnosed early so my disease was very mild. My values were:

    TSH less than 0.01 (normal 0.40 to 3.80)

    T4 29 (normal 12 to 21)

    T3 9 (normal 4.0 to 5.8)

    While I was undergoing tests to determine my diagnosis, I was put on Propranolol to lower my heart beat. Then when my diagnosis of Graves disease was confirmed, I was started on methimazole (brand name Tapazole) at 10 mg daily and my T3 and T4 immediately returned to the normal range but my TSH remained at less than 0.01 for two years until I added Acetyl-L-Carnitine supplement at a dose of 1,000 mg per day to my treatment regimen. Then my TSH rose to 0.78 only to fall again when I was unable to obtain the Acetyl-L-carnitine for one year as it was banned in Canada. I have started back on it and my TSH again rose to the normal range. My medication has been decreased to 2.5 mg a day.

    I saw a medical research article by Dr. Salavatore Benvenga from Italy in the beneficial use of L-Carnitine which is why I tried it. I will send you the links in a separate response. My endocrinologist did not know about it and was shocked at how well my values improved after I took it.

    I would imagine if you are placed on methimazole that it would be a significantly higher dose and you would take it in divided doses 2-3 times a day. You can safely take up to 3,000 mg of the acetyl-L-carnitine daily. If you try this, make sure it is acetyl-L-carnitine and not the regular L-carnitine.

    I have also added vitamin D gel caps and Omega 3 gel caps.

    I have worked for doctors and hospitals for over 40 years and I believe that an informed patient is a pro-active one. I would also get a copy of the lab report every time your doctor does blood work on you. In Canada by law, you are entitled to your medical records but you have to ask.

    For me, I wanted to avoid radiation therapy and/or surgery at all costs because everyone I know who has had this treatment does not feel good afterwards. They are always tired and have no energy and feel cold, can't lose weight, etc. Most doctors will recommend this therapy and push for it. I just told my doc "give me the pills" but you have to be proactive and act on your own behalf.

  • Posted

    I am week one in testing and information myself. I have been told mildly hyperthyroidism with possible Hashimoto. I am having another needle biopsy to check the nodules, my last one several years ago was benign. My Doctor is concerned about the size and I have 2 nodules. So depending on what they find it is either radio active iodine treatment or surgery . SO any words of advice? I am not sure of my levels I have not seen the paperwork yet just a phone conversation since the initial doctor visit on Monday. I am a positive person and will be proactive. I appreciate boards like this to gain information and learn from . I am a Texan so I like the international network to learn from.
  • Posted

    I don't know that much about Hashimoto's. My disease is Graves disease. I guess you will have to wait and see what the antibody tests say.
  • Posted

    Thank you for the replies, the dr has put me on propranolol and carbimazole at a dose of 3 times a day until I can see the specialist and I’m booked in for another blood test in 2 weeks time to check my levels again.

    I would be very interested in the info you have Linda187 I just want to feel like myself again as soon as possible and I would do anything to avoid surgery and radiation therapy

  • Posted

    I did post a link but the Board had to preview it before they will allow it to be posted. You can find out more by googling Salvatore Benvenga and hyperthyroidism. His paper came out in 2001 and I believe another in 2004.. If you have hyperthyroidism, adding acetyl-L-carnitine, even at a low dose of 500 to 1,000 mg to your regimen will help immensely. My boss (a metabolic specialist) told me it would not cause me any harm.
  • Posted

    Thank you...the link has now been posted so I will have a read smile
  • Posted

    Hello loulabellla

    My levels were the same as yours when I found out I had graves

    , this was three years ago now . It's normal to be sent to a specialist as the doctors

    Don't know that much about it .

    I was on the same tablets , it takes a while but you will start to feel better soon.

    If you want to join us on graves 4 there are a few of us on there that help each other.

    All the best Deb xx

  • Posted

    I was only diagnosed in July 2013 as having Graves and have been put on 15mg Carbimazole and was also given Propranolol initially. I was quite curious to read Linda's post about the Acetyl-L-Carnitine. I can see that your TSH levels increased which is interesting because mine still seem to be really low. Of the three blood tests I have had the results were 0.02 lo, 0.13 lo, and 0.12 lo (range 0.35-3.50). What I am trying to ascertain is how the low levels of TSH affect me. Apart from increasing your TSH levels, what other bodily benefits did you seem to get from the Acetyl-L-Carnitine please?

    Thanks - Tracy

  • Posted

    My specialist told me that the low TSH levels indicate that my disease is active in terms of my abnormal thyroid hormones. However, even though for the first 2 years my TSH was less than 0.01, my T3 and T4 quickly returned to normal and my symptoms of rapid heartbeat and heat intolerance were under control with just the Tapazole. My eyes were really really dry and irritated though. With the recent results with L-carnitine, my eyes have more moisture. I have also added Omega 3 which is supposed to help dry eyes and body inflammation.

    I would say that if you get all your thyroid results in the normal range and you have no symptoms, they have no reason to push you towards surgery or radiation and if they do, you know that particular physician lacks common sense and does not have your best interests in mind.

  • Posted

    I found that though most of my symptoms such as rapid heartbeat and heat intolerance were controlled immediately on Tapazole therapy, that the more my specialist saw low TSH values, the more he pushed for radiation and surgery (which I declined).
  • Posted

    That is very interesting because, like you, my levels returned to normal (barring my TSH) very soon after starting Carbimazole, which I believe is very similar to Tapazole. My doctor did offer RAI, but I said that as my symptoms had settled so well with the medication I had no wish to upset the status quo. He totally agreed with me. If, for some reason, things should change, then I would probably have to consider the RAI. My big problem at the moment is weight gain. I lost about 7lb before anyone realised I was hyperthyroid (Graves) but I seem to have piled on that 7lb and another 7lb to go with it since going on the medication. I am currently trying to live on soup and fruit (trying to eat nutritiously but low in calories), I also horse ride, swim and walk, but still I cannot seem to lose any weight. I thought that having a low TSH meant that perhaps I was a bit hypo now instead of hyper. I really seem to be struggling with being cold and my hands are always freezing, so I was kind of hoping the acetyl carnetine would help, but I have bought some now so will give a try.
  • Posted

    I struggled with my weight even before I had Graves and after getting Graves where most people lose weight with it, I didn't, probably because I was 60 when diagnosed. My weight issues are due to metabolic syndrome (do not process carbs properly) and the only thing that works for me is low carb. I had a doctor supervised low carb diet that did not even allow fruit for a month and the weight certainly dropped.

    However, before starting on L-Carnitine, I had my carnitine levels measured and they were low. Apparently Graves causes a drop in carnitine levels and I believe carnitine helps with food and energy metabolism.

  • Posted

    Well it's sounds like it could be worth a try. I will also cut down on my carbs too, although I'm mot really eating that many, just a bowl of porridge for breakfast. Thanks for all your advice though Linda x
  • Posted

    The other thing is that if your TSH levels improve as substantially as mine did, your doc will probably agree to lower the dose of your medication which should help if you are having a weight problem. The carnitine will help with that also as long as the meds are lowered slowly.

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