Secondary Hyperparathyroidism with cyst?

[RH2008]

I have been trying to figure out what is going on with me for 6 months now, but the docs are stumped.  My neuro thinks autoimmune issues, but I'm not "textbook" for anything.  I saw an endo before and he thought Celiac which came back negative...but didn't look any further into a diagnosis and recommended that I go back to my PCP and "start over".  I would love some input concerning my test results/symptoms.
Vitamin D - 5 in March, then 28 in April when rechecked
Thyroid function is normal.
PTH - 91

I'm also anemic, was told by endo that I have an orthostatic b/p issue, my ANA was normal but it mentioned the presence of anti-cytoplasmic antibodies which could either be Anti-smooth muscle or antimitochondrial (Anti-smooth muscle followup test was negative), and my spinal MRI showed a 1cm cyst on my thyroid.

My PCP diagnosed me with Secondary Hyperparathyroidism with the theory that my low Vit D was causing it...but now that they found a cyst on my thyroid (I believe it may actually be on my parathyroid) I'm wondering if it could be primary?  Or is there something else that jumps out at you?

I would appreciate any insight you may have.

Thanks!  Rhonda

[RH2008]

Thanks for both replies!  

Dr. Lupo - The problem I  have is that my calcium is actually normal.  It was 8.8 and 9.3 both times checked.  It was 9.3 when the PTH was taken too and ended up coming back at 91.  The only reason they even checked the PTH was because I requested it.  My doc was stumped because she normally wouldn't order it unless the calcium was off.  We've tested for Diabetes, a Thyroid issue, Celiac, B12 deficiency, Autoimmune panels, Lupus, Myasthenia Gravis, Lyme Disease, Rheumatoid Factor, Porphyria (sp?), and heavy metal poisoning.  All tests have come back negative for each of those.  

I'm now wondering if the parathyroid could be the answer.  BUT, everything I read says that you would not have a cyst/adenoma with secondary HPT.  Is that possible, or is it possible that I could actually have primary HPT?  I just am not finding much information on secondary on the web.  Most indicate that secondary is usually caused by Kidney disease...but my labs are fine in that area too.  I have that appointment next week with Mayo, so I hope they do figure things out so I can feel better.  I would love to know if there is anything that jumps out at you that you would check on.  I am traveling quite a distance to go there and it will cost me a lot financially as well...I just want to make sure they don't miss anything.

Thanks again!

Lesley - I'll email you in a bit.  My address is j r k h o p p a @ y a h o o . c o m.

Rhonda

[Mark Lupo, M.D.]

Would need to see a calcium level -- if high, then the "cyst" may be a parathyroid adenoma -- all consistent with primary hyperparathyroidism (even the low vit D).  Mayo endo should be able to sort this out easily.

[k2626]

Your email address did not go through! Mine is (not sure if it will post so will put a space in btw each letter- l e s l e y j k i n g @ a o l . c o m

I started to feel off months ago--fatigued and dizzy spells. For the past yr I have had night sweats and feel sick to my stomach in the middle of the night--I always attributed to GERD. Well I just blew off those symptoms.

Then 3 months ago is when I started getting pain. I get shooting migratory pains in my bones and joints, sometimes they will pulsate in one area for hrs or stab an area. When I first got the pains I thought I twisted my ankle, then the next am I was fine. The following day my right foot and toes felt like they were being crushed-an hour later it was fine. Then it was back to my other ankle, felt like it was going to snap in half. Then I would get pains in my fingers, or shooting pains very deep in my spine. I was convinced I had bone cancer. Sometimes I get a burning feeling on my skin. When I was in Arizona (before all these pains) I thought I got stung by a scorpion, but nope..it was a random pain in my foot. I have since gotten those sting pains quite a few times..

When I started to get the pains, I started to have EXTREME joint cracking everywhere in my body-I counted 15 times in 10 minutes. I hear it at night alot when I sleep and turn. Drs tell me, joint cracking is normal but it is NOT for me and it is extreme. I also  get a vibrating feeling in my feet from time to time. Now I get little muscle twitches all over my body, mainly at night. In addition, my heart will randomly race at times-even when I am totally relaxing. I had low D (28) a few months back but now it is at normal range. I too get total brain fog. I have had so many blood tests all have been fine. However I have not had my PTH tested and calcium only once which was normal. I am thinking I could have a PT issue, or an AI disorder. I hear they are both hard to dx. If those end up being fine, maybe fibro?

Oh I get blurred vision too, kinda like if I had oil in my eye-does that make sense?

Do your bone pains jump around and also jump around in duration (from stabbing to long aches)? Also, your joints crack a lot as well? Its important for me to note I do not have swollen or red joints....

Please do keep me posted. I will do the same. I just took my PTH test and a new calcium test today.

[RH2008]

I do have similar symptoms to what you are describing, although in the beginning it was extreme fatigue, a foggy brain, short term memory loss, excessive thirst and urination that took me to the doctor.  I have terrible aching in my bones which comes and goes, but is especially bad in my hips and legs and my shoulders.  I also have paresthesia (sp?) that feels like bugs crawling across my foot or hand and also pins and needles feelings and numbness in my feet and hands that come and go.  I have recently noticed join pain (in the past 2 - 3 months) and also notice very loud popping/clicking/snapping sounds in my joints when I move. I also have a very hard time concentrating and frankly feel dumb more often than not.  I have blurred vision that comes and goes and see spots (dark and light spots) in my vision very often.

I have also had numerous blood tests done as well as brain and spinal MRI's, an EEG, a stress Echo when they noticed multiple PVC's during my EEG and a VER test.  All came back normal, besides the PVC's and a cyst they found on my thyroid.  My blood work showed high PTH, very low Vit D, and low blood counts (anemia).  My blood pressure and pulse also apparently fluctuate too much when I change positions, so I get very lightheaded and feel close to passing out multiple times per day upon standing (although I have never actually passed out, but everything gets black for a few seconds).

Anyway, that's probably more info that you were looking for!  Sorry!  I tend to ramble when I write!  I'm actually scheduled to go to Mayo Clinic in MN next week to see their endocrinology department, so I'm hoping they can get to the bottom of things.  If you're interested please give me your email address and I will be sure to let you know what happens after my trip to Mayo.  I'm hopeful they will figure it out and hopefully I can start to get my life back in order!  (I have had to cut my hours to part-time at work and am also the mother of 4 small children, so I NEED to get better as soon as possible!)

You can email me at **** @ **** if you'd like.

Thanks for your post.
Rhonda

[k2626]

I do not have answers but I hear PT is hard to dx.

I have been ill for 3 months. I have had migratory bone/joint pains, fatigue, extreme joint cracking, lower back pain and now musle twitches in my body. I have had loads of blood work (just did labs for PT), Brain and lower spine MRI, a bone scan of my entire body (not sure if it tested density though) and ab ultra sound--all okay

Can you describe your symptoms? Do mine sound similiar? I am frustrated and scared, just to be normal again