Hyperparathyroidism? Need help

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Hi I'm a 36 year old male. My story begins in 2012 when I had a routine blood work done and it came out high in serum calcium (10.7). I had several tests done and my doc couldn't find anything wrong except my slightly high calcium levels. My PTH was low and other thyroid tests were all fine. I've been checking my calcium a few times a year for the past 4 years and my calcium levels have been between 9.9-10.7. My doctor tells me not to worry and I wouldn't be worrying if I didn't have any symptoms but unfortunately I do.

Before 2012 I could sometimes feel that I cramped up easily. That has worsened to the point that my muscles can start aching after very little effort. I also have occasional muscle twitches and lower back pain that comes and goes. I feel extremely tired at times and people have commented at my poor memory. 

I'm at a point where I don't know what to do. I got a second oppinion from a specialist back in 2013 but that was before my symptoms had worsened. My doctor isn't doing anything and yet I feel my symptoms are really starting to infeer with my everyday life. I've also read up a bit online and elevated calcium is far from positive. 

What do you people think here? Anyone in a similar situation?

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6 Replies

  • Posted

    Have you had your Vitamin B12 levels checked?  

    Your symptoms are similar to those of a B12 Deficiency and although it is often associated with people with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease)  it is also often "overlooked" by doctors.

     

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  • Posted

    I had very similar issues to yours. Went to many doctors and spent 2-1/2 weeks at Mayo Clinic. This went on from 1997 until. 2016. Finally I was referred to an Endocrinologist who diagnosed me just by talking to me. Of course he still ran me through the specific blood work needed to confirm the diagnosis. I had 2 parathyroids removed in September and felt 99% renewed but now I'm back to just as tired as before so I don't know. My condition is not just the thyroid and parathyroids. I have a hereditary disease called Multiple Endocrinial Plasia so I have other organs affected as well, which could apply to the tiredness. Definitely go to a good Endocrinologist though. They need to run special and specific blood work. Good luck.

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  • Posted

    Thank you for the replies! 

    The possible b12 deficiency was new to me. I will look into it and possibly ask me dr for a test. This still doesn't take care of my slightly high calcium levels though. I really want to get these down to normal because of all the potential health problems that could develop because of it.

     

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  • Posted

    Hello

    It sounds very likely you have Primary Hyperparathyroidism.   I agree with alan65290 who replied last.   Most doctors do nothing because they are not experienced enough in PHPT and don't know what to do.

    I went to Dr Norman's specialist centre in Florida in 2013.  I had PHPT for at least 6 years and suffered terribly, especially having been wrongly diagnosed with Polymyalgia Rheumatica in the first instance and being erroneously given steroids for a year before I found out what I actually had.  The symptoms got gradually worse and I had dreadful muscle problems and chronic fatigue which is the main symptom and also memory problems.  They have the expertise for this disease in Florida.  I am 99% better now, my osteopenia is much better, the headaches and fatigue and muscle aches have gone.   The sooner you get the right treatment the sooner you will feel better and then your memory will improve greatly as well as all the other symptoms.   

    The worst thing is just to wait and do nothing, it will just get worse.  Choose your surgeon wisely.  Good luck.

    tampapatient

     

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  • Posted

    My numbers were off the charts 11.7 and when they finallly did my surgery down to 5 and my PTH level was crazy my general dr.  wasnt sure if there was a problem.  Find teh best endo dr in your area.  He can do a quick neck scan and see if you have a tumor.  Thy might send you for more detail tests which I did but it just confirmed there was only one tumor.  Took almost a year to feel better even with normal readings.  
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