Hyperparathyroidism

[dbudzinski]

I am a 43 year old female who was diagnosed in June with Hyperparathyroidism.  I have had chronic upper abdominal pain for months and have recently begun to have muscle weakness and severe cramping in my arms and legs.  Could this be due to low phosphorus and if so how can I temporarily raise it?  I am currently seeking insurance and the local er just thinks I am a drug seeker.  I have had an ercp and every gastro test they can think of.  Most Doctors don't link my gi problems with my hyperparathyroidism until I bring them information off the internet.  I have also had two bouts of pancreatitis since this has all began 3 years ago.

Please tell me what I can do to relieve my symptoms temporarily.

[dbudzinski]

Thank you so much for  your help.  This is a really freaky problem to have.  Hopefully my insurance will kick in and well they will operate asap.  Anyway thank you so much.

[Thypatient]

Your pain, weakness and cramping is probably due to some aspect of your hyperparathyroidism.  It might be the phosphorus; it could also be from calcium or parathyroid hormone.  There probably is something you can take to temporarily raise your phosphorus level but it’s probably not a good idea to do so.  The reason is that the kidneys are in such a precarious state right now.  Adding something else could be a further risk.

I went through the same thing so I know how distressing this all can be.  While waiting for surgery I was told to drink plenty of water…and I mean plenty – like gallons!  This did help somewhat.  Of course, if I were you, I wouldn’t do anything without first consulting your drs.

I’m sort of not surprised your drs didn’t make the immediate link as far as stomach issues go – this disease just seems so highly misunderstood.

“…and the local er just thinks I am a drug seeker.”  ~ Well, the local er sounds like it’s filled with a bunch of idiots!

But don’t feel alone.  I had the experience of going to the er for the second time because my calcium was so high (above 13) I was getting disoriented.  There they admitted me to get it lowered via an IV.  The next day I was surrounded by a group of drs and asked a line of questions.  One returned back and even picked up the library book I had been in the middle of attempting to read and asked why I chose that one (…uh, because it was on the ‘new book shelf (?)’).  Then a young student dr returned, pulled up a stool and explained, among other things, that I really should not have shown up at the er.  She also said that in the future I should never do that again.  Basically, it was obvious the conclusion out at the desk was that I was ‘a real case.’

The irony was that I kept saying I didn’t want to be there in the first place and kept asking when I could leave.

Oh yeah, this all came ‘after’ my diagnosis of hyperparathyroidism.  But it all came just before my consult with the surgeon who took over my case.  When I told him of my experiences, including that one, I could tell he was trying to hold back a rolling of the eyes.

I hope you can get this surgery soon and as part of your care fall into the hands of a dr like that surgeon.

Keep us posted on how things progress for you.

Good luck.

[bncrump]

Thank you for the info...I appreciate it. I have been to parathyroid.com and the checklist of symptoms is amazing to me. I have at least 9 or 10 of them. However, I don't have elevated calcium so maybe it's not parathyroid. I don't know. I will ask the dr about it. I think my last calcium came in at 9.4 with a lab limit of 10.0 so I don't think that's it.

Good luck to you and hope you get some answers soon!

[Lori707]

I have high calcium serum and high PTH as well. Took a nuclear and a CT with contrast and there is no adema/tumor. Have extremely low Vit.D which I'm taking 50,000IU weekly to elevate. As the D elevates, so does the calcium/PTH. I'm in a catch22 and the docs don't know what to do.

Any clues?

[stella5349]

There is a person here I rely on quite a bit when I have a parathyroid question here on the forum.

She is Thypatient ( I know there are more people too) She clearly helped me understand the whole process of the hyperparathyroid questions I had -

A highly recommended site to view on parathyroid disease is www parathyroid com. Very user friendly and well written by a Dr Norman in Tampa.

Hyperparathyroid can be difficult to Dx - hopefully you can get the help you need with reading the site and seeing if Thypatient can give you more information.

[dbudzinski]

If you google hyperparathyroidism you will find some great sites.  All of them talk about gi problems and upper quad pain.  If you have hyperparathyroidism your calcium levels will be elevated.  That is how I got diagnosed.  I was just feeling really crappy and went to see my MD.  She ran routine blood work and saw my calicium elevated, i came home and googled it and called and asked her to test my level of parathyroid hormone...low and behold it was elevated as well....  I am still learning about this.  I do know that I will have to eventually have surgery.  They say that surgery is the cureall for this.  If I can help you anymore let me know.  check out parathyroid.com

[bncrump]

I am sorry to hear that you are having such a hard time...it must be terrible.

I do not have any information to help you but I was wondering if you could share some information with me...maybe websites? Something linking hyperparathyroidsim and gastro problems. I too have the upper abdominal pain and muscle weakness. I have not been diagnosed with anything yet....going to an endoscopy on Thursday. I also have not been diagnosed with hyperparathyroidism but I think that I may have that. I am trying to get my endo to test me.

Any information you could share with me would be greatly appreciated. Again, I hope you feel better soon and I am sorry that you are having so many symptoms. Good luck!