high levels of pth. Cause fo severe pain?????

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New Member

Date Joined Oct 2007
Total Posts : 5
   Posted 10/29/2007 11:00 AM (GMT -6)   
I was wondering if anyone has had terrible severe agonizing pain and high PTH levels? I get migraines that have me laying in a dark room throwing up for days. I know what pain feels like. This pain is not like a sprained ankle (I sprain my ankle several times a year btw). It's terrible. I feel like I cannot breath properly or that I forget to not hold my breath.

My symptoms (brief descriptions)

My pain is very symmetrical. It is always on both sides of my body. For instance, severe pain inside my wrists, inside the elbow section of my arm, the tops of my arms, inside my ankles and inside my knees.
Sometimes it is in the top part of my calves and inside my forearms. parathyroid pages say "bone pain", but I swear it would have to be my joints and muscles too.

I get horrible headaches, but am also a migraine sufferer. This started over a year ago and has become worse. I don't remember it being this bad before my head accident, but the neurologist doesn't think it is neurological. I can touch my nose and squeeze fingers on demand...but I do have weakness. He sent me to the rheumatologist.

I find myself curling my hands in towards each other a lot and have to take cabs home sometimes when walking my dog. Now someone else walks my dog for me half the time. I am so scared, but don't have anything to say to my family or partner. I tell them that its probably something easy to fix. Since the rheumatologist said that I have high levels of parathyroid she wants to rule out primary hyper parathyroid??? NEver heard of this. I asked her questions, but she said unfortunately it is not in her area of expertise. She said my levels were quite high. When I search the internet to read about this I don't see anyone complaining of pain this severe. There are days I cannot walk to the bathroom. I need to spend three hours working myself up to it. I don't sleep longer then a few hours at a time and wake up in pain.

I have wretched menstrual cramps that have come on this year and these new constant headaches. When I say mentruel cramps I am talking about hyperventalation, vomiting and living in my bath tub. It feels like I am undergoing surgery without being put to sleep. My lips, tongue and eye lids have swelled and sent me to the emergency room a few times. I've always had allergies, but this bad? Coincidence? Who knows.

I do get some relief when I take my anti-inflammatories and my migraine medication (when not have a migraine) called fiorinal c1/2. this means I will be short for when I have real migraines. I only do this when it is so unbearable that I think I am going to loose my mind. If I took them once or twice a day a few days in a row they wouldn't work anyways. I've read that taking narcotics regularly can coat your nerves and make you extra sensitive to pain when they wear off. There is no way I can handle more pain. I am feeling so discouraged - not to mention that I have no interest in gobbling pain pills long term.

I had to quit my job because I physically couldn't do it and was embarrassed. I was very good at what I did. I went back to university to get trained in something else not physical. Since no one has said this will go away one day, I need to start lining myself up for stuff I can do slumped in a chair.

I am managing to keep up with my university, but waiting another 2 months to see an endochronologist specialist? That sounds as easy as climbing Mount Everest. I had trouble holding my pen writing a week or so ago and this is really making me bitter inside. I am trying not to let people see because they know me as a happy person and I want to be thought of this way. I am afraid of pushing people away. Who wants to be around someone who is suffering all the time? I've seen how people are around my aunt.
Although when I tell them I cannot do something, they are not that accommodating. Perhaps I have minimized it too much.

I have lost twenty pounds this year and am currently living off my line of credit. Fabulous. The good news is I can't really do anything and don't really feel like spending money when I am in pain.
I am trained in French cuisine and can't even cook anymore. My arms and legs hurt too much.

So to my original question: Has anyone had a high PTH level cause them this much pain?

Is a high PTH level only associated with my parathyroid glands? Any other illnesses that cause a lot of pain?

I am so scared and I am not a person to be easily scared. I used to do extreme sports (never injured any bones) and be so excited about life. Now I just try to make it through the afternoon and then I mark off the calender days until the next specialist.

I came on the message board somewhat to prepare myself for another - "I don't know" from a specialist. I don't know if I can handle that.

Veteran Member

Date Joined Jan 2005
Total Posts : 763
   Posted 10/29/2007 1:57 PM (GMT -6)   
 sorry but what is PTH Levels eyes
Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
"Sometimes You've Gotta Laugh To Keep From Screaming"


Regular Member

Date Joined Dec 2006
Total Posts : 275
   Posted 10/29/2007 8:22 PM (GMT -6)   
Pisco, my mom had a tumor on her parathyroid and had a lot of the same symptoms you mentioned.  She had thyroid and parathyroid problems for a long time and the parathyroid went undiagnosed for years.  Her PTH was vey high and had been.  Her internist finally sent her to an endocronologist.
I'm sorry for all you are going through.  My husband gets migraines, fortunately very infrequently and even though I am no stranger to pain, I wouldn't wish migraines on my worst enemy. Have you tried any of the migraine meds like imitrex?
Have you looked into a headache clinic?
Hopefully when you get to the endochronologist, they will have some answers for you.
Take care

New Member

Date Joined Oct 2007
Total Posts : 5
   Posted 10/30/2007 9:31 PM (GMT -6)   
Thanks boxer lover.

I find out tomorrow how soon my endochronologist appointment is. At least my migraines are somewhat treatable with my migraine medication.... When I am suffering I know there is an end to the pain unlike this other pain I have.
Although I admit I wouldn't wish them on anyone. I've had them since i was 12.

t. I was pretty optimistic when I thought the rheumatologist would have a solution, but it was really another dead end. I suppose this is a good thing. If I had lupus like my mother it would be a sure thing that it was forever. My ANA factor wasn't indicatory of lupus, although my c3 or c4 was abnormal on some of my blood tests in the spring, then alright on others. If the pain is actually a result of high parathyroid levels then I guess that is treatable right?

I have this deep seeded fear that they will fix my parathyroid and I will still have the pain.

I'm off to bed. I think I actually fear going to bed now because I always wake up with my worst pain of the day.

Then again if I don't sleep it is even worse.

ps. No one ever explained why my hands swell sometimes so much that I can't see the lines on the joints in my fingers and what has made my lips and throat swell right up in an emergency room. I wish someone would just ell me why this is all happening.
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