Have you had parathyroid disease or severe vitamin d deficiency?

October 19, 2012 5:41 PM

I'm having a couple more tests this week to determine if my medium-term pain and feelings of crapiness are down to severe Vitamin D deficiency or parathyroid disease. If you have been diagnosed with either, could you share your initial symptoms, how you were diagnosed, and how your treatment went?

After being pregnant and breastfeeding for close to two years and moving to a dark dank place, I've been feeling terrible. I've been narrowed down to these two possibilities by other testing after an initial high alkaline phosphatase test. I am receiving all appropriate medical care (as far as I know), but would like some personal stories to get a sense of how typical my case is and what I can expect from now on. Thanks so much!

posted by crabintheocean to health & fitness (11 answers total)

My wife battles Vitamin D deficiency. She described it as some of the worst pain of her life. The good news is once they figure it out, the pain and general feeling of blah subsides very quickly once you Vit D levels come up a bit. I'm her case, the initial blood work did not show low Vit D, so she went through a couple of months of suffering while they ran her through every specialist in the medical profession. A rheumatologist finally decided it had to be Vit D and re-ran the blood work.

About a year later we got a letter from the lab telling us they had issues the previous summer with faulty Vit D tests. I think we already knew that.
posted by COD at 5:57 PM on October 19, 2012 [1 favorite]

I had a pretty severe Vitamin D deficiency which wasn't too bad during the summer (i.e. I just felt shitty and lethargic,) but every winter was incredibly dark, emotionally. I thought it was SAD and got a light box, which helped, but then found out about Vitamin D deficiency. I started taking 5000 UI a day around the fall, and last winter I did not need the SAD light at all. The change was so profound that I was surprised that all it took was regular over-the-counter vitamins.
posted by griphus at 5:57 PM on October 19, 2012 [3 favorites]

Oh, around the time my doctor suggested taking Vitamin D, he also told me to take B-6, B-12 and folic acid. I take all of them, every morning, but boosting the Vitamin D from 2500 UI to 5000 UI was the most significant change.
posted by griphus at 6:00 PM on October 19, 2012 [2 favorites]

I have Vitamin D and B12 deficiencies thanks to some malabsorption issues -- so my symptoms are all tied up with gluten intolerance.

When I finally was diagnosed, I was tired all the time; eating brunch and visiting Target to pick up some laundry detergent of a Saturday tapped all of my reserves for the day. My hair was falling out like whoa, my menses were irregular (too frequent and heavy), I had panic attacks and sometimes hot flashes, my stomach always hurt. I was irritable and unproductive and very, very unhappy.

I was put on 50K IU a week for nine months. That is not a typo: 50,000 IU. (And of course no gluten.) I do much, much better now, but I do need to remember to take OTC D, especially this time of year, and during a rainy spell.

My symptoms have nearly all resolved. I can be out running errands all day and still have the energy to do some cleaning when I get home. My body has experienced a lot of other changes, as well. My skin is normal-to-oily now vs. extremely dry as it was all my life; my dry eyes have become moist again; I sweat more heavily when I exercise. Mostly, though, I just feel better, in a profound but hard-to-describe way. I can deal with the world. I couldn't do that before.
posted by Andrhia at 6:16 PM on October 19, 2012 [2 favorites]

The Vitamin D blood test is a little more variable than many blood tests ("Vitamin D" for one thing is more than one chemical and different tests are more or less sensitive to the subtypes of Vitamin D), so trust your instincts with it. See here for some details. It's not that the labs mess up - it's that the test is quite complicated and standardizing it is not simple. (NB, I work in the diagnostics field; I do not work in Vitamin D diagnostics; I am not your diagnostician.)

Anyway, as for personal experience, my levels came back a little low (15 ng/ml) so I was instructed to take a supplement and got retested -- my levels went up to 40 ng/ml, but the particular test I took only detects what in the supplement and not the active form that it is converted to by the body. So I don't know...I felt pretty much the same before and after -- the test was done because I was in the midst of an inflammatory arthritis flare...taking the Vitamin D supplement didn't help with pain and swelling at all. I continue to take the vitamins including the vitamin D, because they can't hurt with my inconsistent diet. If I run out or forget for a few weeks, I don't really notice much...
posted by Tandem Affinity at 6:42 PM on October 19, 2012 [1 favorite]

About four years ago I was diagnosed with severe Vitamin D deficiency. I didn't really have any alarming symptoms aside from battling a "cold" for about 6 months that just wouldn't go away, and I only found out about the deficiency because I went in for a routine physical and bloodwork.

When I'm not taking vitamin D supplements and eating shit tons of fatty fish, my vitamin D level is completely undetectable (which according to my lab means "below 10 ng/ml"). When I am supplementing with about 10,000 IU of RX vitamin D every single day for several months, my vitamin D level goes up (barely) to about 19 ng/ml which is still in the "not good enough" category.

The good news is that my chronic "cold" went away after I started supplementing and I haven't really had any other effects that I'm aware of. In the long term, however, I'm pretty damn concerned about the higher incidence of MS among people with low D levels.
posted by joan_holloway at 8:01 PM on October 19, 2012

IANAD but elevated calcium levels, apparently even slightly elevated ones, are the first sign that you have parathyroid disease. Also you should have elevated paratharmone levels, and will probably have a vitamin D deficiency, which apparently you should not treat until you get the parathyroid disease treated. http://www.parathyroid.com/ is a good resource

getting treated was a miracle. wait, you mean there's no reason to think that I have ADD? My bones are going to miraculous gain strength within a matter of months? I can wake up in the morning? And some other cool stuff. memail me if you end up having the disease and want to talk about it.
posted by saraindc at 11:39 PM on October 19, 2012

I also had severe vitamin D deficiency. Initially I was treated with 50,000 iu of Rx Vitamin D 1X a week for 6 months. I felt a gradual upswing in energy and mental health after the second month. Then the Rx was finished and I (like a doofus) failed to continue to supplement.

Cut to 2 years later and a different doc. She told me to go get a bottle of 10,000IU Vitamin D3 and take once a day for 3 months then once a week after that. I feel much better all around. I promised myself to stop being a doofus and just take the stuff.

It's funny- you'd think that since I live in Florida I'd get enough VitD from the sun, but no.

I'm also on Synthroid, but I make sure that I never miss a dose of that. If I do by mistake, the next day I feel like I have a VitD deficiency! Go figure.
posted by PorcineWithMe at 3:23 AM on October 20, 2012

I have a Vitsmin D deficiency (as does 99% of the population of Seattle). When I went into my physical, it was at 22. I was first diagnosed two years ago, and my prevailing symptom? Just overwhelming anxiety and depression. Like, going out to buy a coffee - if I can't open the creamer? Sobbing breakdown. I even walked out of a soccer match because the noise was just too much - and I'm a Sounders FC season ticket holder. I'm used to soccer matches. I bungled a job interview because I started crying at the first question, and when I finally got a job? The thought of a Performance Review gave me anxiety for months.

I got put on 100,000 IU a week (not a typo) for a few months two years ago, and the change was magical. I felt functional for the first time. I felt good, actually.

I let that lapse, and now I'm in that same cycle, where I had a new physical, and I have a deficiency again. I restarted taking high doses three weeks ago, and I'm waiting for it to kick in fully. In the meantime, last night I dug out my sunlamp, and am also sitting under it. Now to see if I can do something like check my voicemail without feeling overwhelmed.
posted by spinifex23 at 9:41 AM on October 20, 2012

Results in and it's the Vitamin D! I just started a supplement.

Andrhia - I could have written your list of symptoms pretty much word for word. You mean it's not normal to be exhausted by a grocery store trip?!

Thanks everyone!
posted by crabintheocean at 3:08 PM on November 13, 2012

So glad to hear you got a diagnosis. I'm sure you'll feel better in a snap!
posted by Andrhia at 7:29 PM on November 13, 2012 [1 favorite]