Wegener's and hyperparathyroidism

[Poppy65]

Does anyone have both of these conditions? The symptoms are similar and I have both. Just wondering if that's common. Thank you.


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[andrew]

Bumping...anyone??

[Pete]

vdub perhaps?

[vdub]

Nope, not me. I'm hypopara or, at least, I think I am. I should give a rundown of what I found out at Mayo, but not today.

[Bloom]

I have both. It was what eventually led to my diagnosis. A scan of my parathyroid gland, showed something on my thyroid gland in addition to a parathyroid adenoma and because they thought it looked suspicious, they started to scan my lungs and concluded I had thyroid and lung cancer. It was Wegener's. The surgeon who removed a 4cm lung mass said afterwards that he thought the parathyroid stuff was Wegs. Every other consultant has said it can't be.
Treatment for Wegs has lowered my calcium levels though. Apparently the only treatment for the parathyroid adenoma, which caused hyperparathyroidism, is surgical removal and they won't do that now.

[Poppy65]

I have both. It was what eventually led to my diagnosis. A scan of my parathyroid gland, showed something on my thyroid gland in addition to a parathyroid adenoma and because they thought it looked suspicious, they started to scan my lungs and concluded I had thyroid and lung cancer. It was Wegener's. The surgeon who removed a 4cm lung mass said afterwards that he thought the parathyroid stuff was Wegs. Every other consultant has said it can't be.
Treatment for Wegs has lowered my calcium levels though. Apparently the only treatment for the parathyroid adenoma, which caused hyperparathyroidism, is surgical removal and they won't do that now.

Thank you for sharing your situation. Do you happen to have fevers? I have a fever between 100.6-101.5 every afternoon. During the fevers I'm achy, as if I'm coming down with something. At the same time the bottom of my neck and trapezoid muscles ache too. I was on standard treatment for Wegener's, but since the fevers continued my doctor took me off the regime. He thinks the fevers are from something other than Wegener's.

Thanks again :)


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[Bloom]

Hi Poppy,

I'm sorry to hear that your hyperparathyroidism is causing problems with your treatment. I did frequently have an elevated temp before I started treatment for Wegs but I seldom have now. When I feel achy, as if I have flu, my ILD (interstitial lung disease) consultant says it's Wegs. I know if I increase my pred the achiness stops.

Best Wishes

Bloom

[vdub]

It's been two weeks since I returned from Mayo and I've now had the "out brief" from my PCP. The Mayo findings, unfortunately, are unremarkable. There's little question I have Granulomatosous Hypophisitis (GH), but less evidence to suggest I have Wegener's. As a test, they have suggested I quit taking MTX and pred totally. I had actually quit taking pred last December. I'm now down to 4 tabs of mtx and decreasing at 1 tab/week. I seriously doubt that I will have a weg's relapse, since I have quit mtx cold many times for different surgeries. This time I'll just stay off.


Mayo felt that my right diaphramitic paralysis was coincidental and had nothing to do with my AI conditions. Its simply a matter of $hit Happens.


My bradycardia was likely caused by 7 years of narcotics. Now that is a big bummer! Its really sad when your meds cause additional damage. I've been on either hydorcodone or tramadol for most of the time since I was dx'ed back in Apr 2010.


I'm now tapering off the narcotics and probably going through some sort of withdrawls, because I generaly feel poorly.


In addition to the two endos that I saw, I also saw a rheumy and a neuro. The rheumy and neuro believe I have fibromyalgia, but the internal med doc called it multifactorial myalgia. At any rate, my muscles hurt quite badly most all the time. I wish I could blame the muscle pain on narcotic withdrawls, but I had the pain even before quiting the narcotics -- its just much worse now. If I still have the pain in another couple of weeks, then it will definitely be caused by something other than withdrawls.


If all that isn't enough, recent blood tests have shown some evidence that I'm hypoparathyroid. Hypopara is a disease often assoicated with AI diseases. Its a matter of your parathyroid glands just checking out and heading south. Recent blood tests have shown my PTH to be out of range low. However, my calcium has remained normal as long as I'm on Active D and calcium.


Lack of calcium causes muscle cramping similar to what I'm having (what Mayo thinks is fibromyalgia), so my endo wants me to try a recently approved drug called Natpara, which is synthetic PTH. Unfortunately, Natpara costs about $138k per year. That's more than $10k a month. My insurance has already approved it and will pickup 100% of the cost, but I'm not going to go on it until every other option and alternative is exhausted. Doing otherwise would be an afront to the taxpayers.


So, that's the standing. Bottom line, I'm still living with a tremendous amount of pain, but it probably isn't due to Wegner's, in fact, I may not have Wegeners.


Oh, one thing Mayo did state definitively that I found very interesting is that I didn't have Sarcoidosis. I thought that was interesting, because I have always felt that sarcoidosis was kind of the catch-all AI disease when they really didn't know what you had. I guess that's not so.

[MikeG-2012]

Holy AI Diseases VDub Man!!!

I really hope that they can get you on the right path and drop your pain to manageable levels. It sucks to be in pain all the time.

Nice to know about the pain pill damage. Sorry you have it. I am glad that they are my last resort these days, and not the norm as they were in 2012.

Get Well Soon our Little Kahuna Apprentice!!

Drive on!!

[vdub]

You certainly gave me a chuckle for the day, Mike!

Sun finally came out, so maybe I'll go work on my MG a bit.

[Pete]

vdub: Yikes!!! Glad you're managing ok. Looks like you may join BookNut as an honorary weggie.

[drz]

VW
Sounds like a through eval which you hoped Mayo would do, but results are a bit mixed for sure. I hope things get better down the path for you. Keep us posted on how it goes for you!

[vdub]

Yeah, no wegs, Pete, I'm out'a here buddy! :-)

If I don't have any weg's symptoms in say 6 months after coming off the mtx and pred, then I'd have to conclude that I don't have wegs. Which in a way would be too bad, because if you look up the causes for fibromyalgia (assuming I have it), then it could have very well been caused by an "over reaction" to my pituitary (or lack of) which is a certainty and treating me for wegs -- if that somehow makes sense.

Personally, I don't think I have fibromyalgia. One of the things that was mentioned several times to me was "deconditioned" and I thought to myself "fat, lazy, out of shape slob". When I finally got home and looked up the medical definition of deconditioned, it is more than being fat and lazy since there is both a mental and physical component to it. Its still fat and lazy, but more involved than just being a slob. I'm hoping the summer sunshine and good hard work will reverse things. that's the hope anyway. Besides, I would fit into my MG a whole let better if I lost 20 lbs.

Speaking of the MG.... I'm putting a new top. Up to this point on the restoration trail, I haven't had a top. When Geoff and I were running all around Idaho we hoped for good weather and sunshine because there wasn't any top. Now I have a top (almost anyway, I still have some trim to do) and for the first time in 42 years I sat in the car with the top up. I have to tilt my head slightly to see out the front windshield. Kind of funny. I'll see if I can get a picture of it.

[MikeG-2012]

for the first time in 42 years I sat in the car with the top up. I have to tilt my head slightly to see out the front windshield. Kind of funny. I'll see if I can get a picture of it.

Just do like Bubba Smith did in Police Academy. Sit in the back seat. Wait....that won't work will it? (-8

[vdub]

Just do like Bubba Smith did in Police Academy. Sit in the back seat. Wait....that won't work will it? (-8
HA! No, I'd be sitting on the gas tank. I'll try to mostly finish the trim today and get a pic.

[vdub]

Here we go! A bit tight, but that gives me more reason to run with the top down.

2590

[Alias]

Sorry to hear you did not get more encouraging news, or more of a direction toward effective treatment. Best wishes....

[ST316]

Hi Vdub,

I haven't been on this sight as long as most, but I do follow it on a daily basis. As glad as I'd like to say you're free of your Weg status, You
are still ill and you do contribute immensely to this group. I hope you are not so quick to flee, and if you do, kindly let me know which group you join
next so that I may follow. Just call me a Vdub groupie.

Best,
Susan

[vdub]

Thanks, Susan! I'm not going very far. Too many friends here.... :-)

[Alysia]

Sounds complicated... thanks for sharing, vdub. I am sorry for your pains.. I thought that your granulomatosis Hypophisits is part of WG... no idea if all these are good news after all ? Hang in there with the withdrawls... praying for you.
Btw, Doug who was a member here, was more then 10 years without any wg symptoms. So not sure if 6 months can tell... lets hope you just dont have it.