Maggie 7848

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It's now 5months since I had a parathyroid tumour removed . I thought I would be back to full fitness but unfortunately I'm still feeling tired with no energy. I've had my blood results back and other than my calcium being a little low now all seems to be fine. As anyone else had the same problem. ? Thanks Maggie

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  • Posted

    Hi,

    Today marks 4 months since my surgery and I still don't feel right with lack of energy and muscle weakness. I've been to numerous doctors and every test has come back normal. My last calcium was 9.1. My doctor thinks my body is fighting low normal calcium after being high for 10 years. I've also been having muscle twitches since the surgery. Have you experienced these? I had my surgery in Tampa and had two glands removed. How about you? Ready to feel normal again!

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    • Posted

      Hi Tara thank you for replying . I've not had muscle twitches but some pins and needles. Mostly it's weakness in my body everything is hard work Normally I'm very active but now I tire easily , I also have kidney stones. When I first had the op I had a blood test immediately after and everything was normal . Later I was put on a high dosage of vitamin D 40000 i u per week to adjust thecalcium and PHT . I'm still under the hospital for tests but so far apparently everything is normal . It's crazy . I live in Staffordshire England . Take care

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  • Posted

    Hi

    I am 6 months post surgery. Compared to what my life became I am doing great but I was told by endo that the trauma my entire body went through that I needed to be more forgiving of my short comings.

    I will say that every week I see some improvement.

    I wonder though with osteoporosis which as a single disease causes fatigue that rebuilding bone as fast as we can after this surgery if part of our tiredness is due to the work our unseen parts are doing.

    My calcium and pth levels are still out of wack, and I too am on 4000iu of vit d. By the way I live in Texas so it seems Doctors are the same everywhere.

    Julie

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    • Posted

      Hi thank you Julie for replying. I wouldn't think u would need Vitamin D living in Texas but it's still good to know that u are still being prescribed it. Not much sun in England at the moment . A good thought by your endo and I don't mind feeling like this if my bones are being repaired. I'm seeing my endo in July and I shall put the question to him. It's so good to talk to people with the same problems . Thank u Maggie

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    • Posted

      Hi Julie thank you for replying. I wouldn't have thought u needed Vitamin D living in Texas but it's good to know that your doctor is acting in the same way as mine . I am seeing my endo in July and I shall ask him about the bone repair . It's very interesting and a good theory. I don't mind feeling like this if the end results are good and my bones repair. It's good to talk to people who have the same issues thanks u Maggie

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    • Posted

      Hi Julie,

      It's nice to talk to someone who has gone through the same surgery and compare stories.

      I need to find a good endocrinologist since I had my surgery in Florida and live in Georgia. No one in Georgia would consider doing the surgery because my pth was always low normal, for some reason. I traveled to the Norman Parathyroid Center for the surgery and have been following up with my family doctor but I'm not sure how much he knows about calcium and pth levels.

      I do know that my vitamin d has fallen the last couple of times they have checked my levels. Do you take 4,000 of vitamin d a day? Also, if you don't mind me asking what has your calcium and pth been? Have your levels fluctuated a lot since having the surgery?

      Thanks so much,

      Tara

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    • Posted

      I am on 4000 a day and try to get sun and eat all high d foods. I am rebuilding with diet only on calcium so d is to help blast my bones with all the calcium I can get into them.

      My pth levels have been low since surgery about 40 but they fell from an unseen 4000 to 80 during surgery. Endo says levels are low because the remaining paras are having trouble waking up.

      My calcium levels are jumping around from 8 to 11 but I have been guaranteed these will level out in time and there is nothing to worry about.

      All in all I feel very lucky I have a great endo and my surgeon here was wonderful. My adenoma was golf ball size and t scores pretty bad.

      By the way muscle twitches were mentioned I am after 5 months having severe muscle cramps I am wondering what that is all about. I have started being more aggressive in my exercise and have cut out all processed foods.

      Any ideas

      julie

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    • Posted

      Hi Tara all I know is my pth was high and the endo put me on 40,000 iu vitamin D per week to adjust it . I'm now only on 800 iu per day. My calcium is apparently still on the low side . They don't give measurements in England .

      I will see my endo in July for more tests and adjustments . It's all experimental trial and error. Take care Maggie

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    • Posted

      Maggie

      Have you noticed a lot with this is trial and error. All my Drs have told me they have no idea how things are going to play out since they have never had as severe a case as mine.

      Not really what you want to hear but logic and knowing yourself can help you to get what you need done. Keep searching for answers and then get someone to listen.

      I hope you have good news in July.

      Julie

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    • Posted

      Thanks for the reply. My calcium just seems to fall a little more each time they check it. The last time it was 9.1 and the last time they checked the pth it was 13, which is low but he didn't seemed concerned. I wouldn't be either if not for the weakness and twitches. I guess they'll figure it all out eventually. I guess the whole calcium thing is trial and error, but you know you're body and you know when you don't feel like yourself. I'm just trying to eat right and exercise. I wish you all the best.

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    • Posted

      Tara,

      Check out symptoms of hypocalcemia. Could explain muscle twitching and fatigue. I presume you are on calcium supplement or diet.

      Don't just go away, having someone to talk to is so great since it is hard to meet people that have had this and it is still obscure to most Doctors.

      Keep us up on how you are doing

      Julie

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    • Posted

      Julie,

      Thanks! It definately helps to know I'm not alone on this journey. That's exactly what it has felt like! I've just read a lot of testimonials on the Norman parathyroid website that led me to believe I would be doing cart wheels days after surgery and here I am 4 months out and still don't feel right. I definately feel like I have a lot of symptoms of low calcium even though mine is normal. Maybe my body just doesn't like the new low normal levels since I was in the 10's for over 10 years.

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    • Posted

      Thank you Julie I agree with all u say . Until I had my operation my friends nor myself had never heard of parathyroid. Take care and keep smiling
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    • Posted

      Hi Tara I'm just doing the same because that's all we can do . Hopefully we will improve please let me know of any improvement in your health which could help thank u m x

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  • Posted

    Getting your calcium, magnesium and Vit D balance right seems to be a key in feeling better, Maggie.  

    I had a parathyroid adenoma removed at the same time as my thyroid (I had graves disease and reacted to the meds that can control it, so needed my thyroid out).  I now am hypothyroid and on thyroid meds for the rest of my life, but talking to people who have had parathyroid problems on facebook lets me know that it is quite common for people to still have some problems after surgery.

    If you put hyperparathyroidism into the address bar on fb, you will find support pages there.

    Another possible thing that helps is boron, which is a trace mineral.  Google boron and also The Borax Conspiracy to find out more.

     

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    • Posted

      Hi Anne,

      I read the mentioned article very interesting.

      I wanted to let you know I looked up some other chat sites and this one seems to be the easiest to get to where you want and I like the conversations.

      I found one US based and imediatly came across a Canadian and Belgian so got to love technology.

      Julie

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