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recovery after vitamin D deficiency User Group
An update from a former deficient
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Feel free to tell your story,Let's hear your experience.

Founded by bisan on February 15, 2010
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An update from a former deficient

Hello all,

So.. A long time ago I promised that when I got better I would come back here to provide an update. It has taken a long time, but I now feel like I'm almost back to normal, and all the pain and suffering seems almost like it was just a bad dream. But I remember, and those are not fond memories.

I'm guessing this will be a long, somewhat rambling post. I'll start with an introduction to my problems and then the failures and eventual success of my treatment. I'll try to not turn it into a novel.

It all started about a year and a half ago, when on and off I'd have what I'll call a light brain fog: A feeling of density in my head, like it was stuffed with cotton. At first, I didn't give it much thought and assumed it would go away, and sometimes it did. But after a while it started getting worse and it wouldn't go away. It was literally on my mind all the time, and I became more and more worried. Eventually it got to the point where it was all I could think about, and I was desperate to get rid of it. I was convinced it had to be something in my diet or some other external influence on my body. I tried everything: I went gluten-free, decreased and increased every mineral and vitamin I could think of, stopped eating protein, carbohydrates, you name it (one at a limited time, of course). I started turning off the gas coming into my apartment when I wasn't using it because I'd read the symptoms were sometimes experienced from gas poisoning from a gas leak. Nothing helped.

Then I started getting physical symptoms in the body outside my head. I was so fatigued, tired all the time. At first I thought I was just sleep deprived and just had to get a few good nights' sleep. But I slept and I slept and I didn't get any less tired. I would just lie on my bed not able to do anything else, but I wasn't tired in the normal sense; I didn't sleep, I just lied there. Climbing the stairs to my apartment became a marathon, and I'd have weird fever-like episodes with the normal symptoms: Bone and muscle pain and I think increased core temperature (I didn't measure this, I just felt very warm). But something felt off about it: I hadn't had a cold and I had no respiratory symptoms. Eventually the bone pain would become more permanent; it was a little weird, it felt like there were lots of creatures inside me gnawing away at my bones and muscles.

Around September or October 2010 it got to the point where I felt I had to go to a doctor, not out of want but necessity. I was getting really bad headaches and body pain and felt like my body was just collapsing in on itself. The doctor couldn't find anything obviously wrong with me, but luckily he had started including vitamin D in his standard blood tests, which came back at 10 ng/L which is severely deficient. I was relieved to have a diagnose, and was put on 100 000 IU a week for six weeks and a maintenance level of 1000 IU and 500mg calcium per day.

After the six weeks had gone, I felt better. I got my levels checked again and was at a whopping 75 ng/L. I wasn't in as much pain and I felt like things were getting better. I was nowhere near recovered yet, but I had hope. I still had headaches, dizziness and brain fog, but the vitamin D somehow gave me a little temporary relief in exchange for a (different kind of) headache. I would take that headache instead of the dizzy fog so I kept taking around 5000 IU a day.

After a while, I realized I had plateaued and wasn't getting any better. Hope turned back to despair, and I was still foggy, dizzy with an all-around crappy feeling. So, around six months after starting the D cure, I went back to my doctor. He said there's obviously something else going on in addition to the D deficiency and asked if I would be willing to try an anti-depressant. Now, I did not at all believe that I was depressed. I'd read about how depression can cause these physical symptoms, but I wasn't sad and I couldn't think of anything that could have made me depressed except of course for the ongoing symptoms themselves. There had been lots and lots of anxiety though, about how much I wanted to get rid of this **** and how it was destroying me. But I was desperate and thought why not, if there's a microscopic chance I'll take it. And I trusted the doctor to know better than me. I guess I'm not in any danger of spoiling the ending to this exciting story when I say that he did indeed know better than me.

I started on Citalopram, which is the generic form of Celexa. I understand why they call them happy pills because they pretty much instantly made me much happier. They stopped the constant worrying in my head. They too gave me a headache, but I didn't really care. The fog, dizziness and headaches were still there, but I stopped worrying about it. This, it turned out, was the key to my recovery.

It's been around seven or eight months now since I started taking Citalopram, and I am incredibly relieved to say that I'm almost back to normal. Everything got gradually better since I started taking it. At first it would give me headaches and an almost euphoric feeling. I knew it was "fake" happiness, but I didn't care because I knew it kept me from that destructive cycle of constant worrying and with the thought that this would eventually allow my brain to heal itself I just took my pills and enjoyed the slight high. With time, both the euphoric feeling and the headaches converged to a point where I'm now almost back to normal. I can now get on with my life and I can enjoy everything I'd lost with the depression/anxiety like music, movies, family and friends.

I'm still not sure what was caused by the vitamin D deficiency and the depression and what the interaction is between them. In the beginning, after I realized I had a depression, I was very curious about finding out the cause because I could not understand where it came from. I asked my doctor if it might have been caused initially by the D deficiency, to which he said yes, but I suspect he said that just to get me to stop thinking so much about it, which I did, consciously and unconsciously. I've stopped trying to analyze it now and am just happy that it's over, and I think, no matter the cause, shutting down that constant worrying and obsession with it was key to making it go away, and there's no way I could have done that without the pills.

And.. I think I'm done. If you've read this far, congratulations! I know it turned out a bit long-winded, but I hope you found it interesting or inspiring. I hope you're getting better and will eventually experience the relief that I have.
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6 Comments
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Avatar_f_tn
Thank you SO much for your detailed post.  I'm so glad for you that you are doing so well now.  Much of what you describe (brain fog, bone pain, fatigue, feeling un-well, dizziness, the overwhelming worry over worsening symptoms etc) describe me, as well as a lot of other posters here, almost to a "T".   My symptoms always seem to be drastically worse in the winter months.  

I'll try to keep this short, but like many of the posters here, there are so many symptoms & shared experiences that it's almost impossible not to write a mini-novel about it.  :)

I have Vit. D deficiency and, stupidly on my part, did not take this seriously when my dr first diagnosed me approx 2 yrs ago in the winter months (I live in Michigan, not much sun in the winter).  My Vit D. level was 4 ng/l  at the time, which I now know to be severely deficient.  My dr said it was no big deal & simply told me to take 400IU's of D3 per day.  I went on my merry way, took the 400IU's once per day & my health seemed to improve gradually over the next few months, coinciding with spring & summer weather, although I didn't make the connection at the time.  I (stupidly) quit taking the Vit D. until, again in January of 2011, I started having the same weird symptoms, went to the dr., he ran a bunch of bloodwork.  Again, the Vit D. came back low, I can't remember what it was but I think it was around 20 ng/l.  Because I was having morning nausea every day for approx. 8 wks, at the time I was more worried about the nausea than following up w/the Vit. D issue.  There has been a lot of of stomach & colon cancer in my immediate family, as well as paternal & maternal grandparents so I was worrying myself into a tizzy.  

Anyway, I was referred to a gastroenterologist.  I couldn't get an appt til April, & from Jan thru April, I still had all the same lousy symptoms of the Vit D. defiency, plus the nausea.  The Gas-man did an endoscopy, which came out normal, & I had a colonoscopy scheduled, but right at that time we lost our health ins so I cancelled it.  Around May or so, the nausea stopped & I felt good again, not great, but able to carry on w/my normal activities, & the Vit D. issue again seemed like a non-issue since I was feeling pretty decent.   The only symptom I seemed to have was a lot of bone pain, which I just chalked up to aging (I'm 54), but which I now realize was my body trying to tell me something was just not right.  

I think all who are reading this post know where this story is going.  About 3 wks ago, again in mid-January, I started feeling weird again.  It came on pretty gradually but within 4-5 days I had the brain fog, the dizzy 'whorling' feeling, my concentration was terrible,  some mental confusion, no appetite, very irritable at times, bone pain was worse, plus the practically 24/7 worry & anxiety over these horrible symptoms.  I went to the dr 1 wk ago today, feeling like the proverbial 'broken record', listing my symptoms to my dr once again, this time telling him that I seem to 'get this way' every winter.  I could barely think straight during the appt.  He seemed pretty unconcerned, never mentioned starting Vit D supplementation & sent me for fasting bloodwork the next day.  I started taking 2000 IU's of Vit D the next day on my own.  I should have been taking it all along, & I blame myself for not taking it more seriously & putting myself through unnecessary suffering.  

Yesterday, my dr. called to tell me 2 things:  My blood calcium level was high, and Vit D. was low at 20 ng/l.  He said the high calcium level was most likely the 'reason I was feeling poorly'.   He said he would see me at my follow-up appt Feb. 16th to do some more blood tests re: the high calcium level.  All the other routine blood tests, CBC, ANA, TSH, B-12, etc, came back within normal range, except for glucose was 111, which my dr said is 'okay for now'.   He never mentioned Vit D supplements, & I was so frustrated & feeling so awful I just told him I'd see in next week at my appt.  

So, here I am, once again suffering Vit D deficiency symptoms, worrying practically from the time I get up in the morning 'til the time I go to bed at night. I feel as if I'm in a never-ending cycle of bad health and that most of it is my fault for failing to take the Vit D supplements continuously all year long.   I feel so lousy that I'm scared to drive in case I get dizzy, and my husband is out of state working & won't be home 'til Fri nite.  I've tried to downplay how bad I'm feeling because I don't want to worry him, but last night on the phone I spilled the beans & told him everything.  

I'm trying to think positive and relax, hoping that the 2000 IU's of Vit D. will start to kick in, but I know it takes time.  Reading other's posts about this issue helps immensely because I feel like I'm not alone in this & that there are others who have felt this way too & gone on to recovery & better health.  

Sorry this post is so long & rambling, I hope I don't sound like a nut-job or something :(

Cindy      

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Avatar_m_tn
Keep you chin up.  You will feel better.  I also felt better during the summer months.  We must all get lots of Vit D during the summer from the sun.  I just increased my dose from 5k to 10k per day and will have my blood test done in 6 weeks.  My level was 31ng last week.  Have the same feelings as you, dizziness, some bone pain, weakness etc.  I want my levels over 50ng.  Sounds like you ahd your thyroid checked.  For the guys out there, have your testosterone checked.  Low T can cause many symptoms like weakness, anxiety, fatigue, sweating etc.  Good luck.
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Avatar_f_tn
Thanks Gary.  I'm going back to the dr today for follow-up tests on my high calcium level & to discuss my low Vit D.  I'm so afraid he will (again) minimize the Vit D. issue.  From what I read on this forum & other sites, a high dose Vit D pack is what he should be prescribing.  The more I read up on low Vit D., & re-read the posts on this forum, the more convinced I am that most, if not all, of my symptoms are Vit D related.  The problem is convincing my dr to take it seriously.  My brain fog was so bad that yesterday I was standing in my kitchen & couldn't remember what I was doing.  A feeling of confusion came over me & it scared me.  After about 1 minute or so, I remembered I was in the kitchen to make myself a sandwich.  I'm thinking that the brain fog/confusion partially stems from the fact that I can barely eat, thus adding more symptoms into the low Vit D. mix.  I'll post more when I get some answers & test results from my dr.

Thanks to all in this forum.  Hang in there, everyone.
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Avatar_f_tn
Cindy,

I don't mean to give you yet another thing to worry about, but high calcium with low D can be a symptom of hyperparathyroidism. It's pretty rare, but since your dr mentioned high calcium explicitly I thought I'd mention it. There's lots of information on ****.com, but don't let it worry you too much, I was convinced I had it and I didn't.
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Avatar_f_tn
Thanks so much for the reply.  I did check out the same website you mentioned; another poster recommened it too.  Lots of info there.  

You are right on the money when you say it could be hyperparathyroidism, because that's exactly what my dr told me it might be when I saw him 2 days ago.  He sent me for bloodwork yesterday to re-check my calcium (assay calcium, total.  Ionized calcium).  And, of course, the PTH (parathyroid hormone).   He said that if my calcium is still high & PTH is out of range, he's referring me right to a surgeon!  I looked at him in total amazement.  I simply do not believe I could go from having low Vit D & high calcium to seeing a surgeon in the space of 2 wks.  There must be other ways to get the calcium level down & the vitamin D up.  The way my dr talked, if I take too much Vit D., it makes calcium levels go up!  I'm like "oh great".  Only after I pressed him w/several questions did he tell me to take 2000 UI's of D3 per day til the blood work comes back.  He seemed quite reluctant for me to even take any Vit D.  Sheesh!

But I'm going to take your advice & try not to worry about it.   Like you mentioned, it's pretty rare.  I think taking things one day at a time will serve me well.  That, and a lot of praying.  

By the way, I'm on Celexa too.  20mgs per day.  It works pretty good to keep me on an even keel.  

Again, thanks to all in this forum.  I hope to someday soon be in a position where I can be healthy & be able to help someone else out like you've all helped me.  ;)
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Avatar_f_tn
(The censored part in the website address was supposed to be "parathyroid", but I guess you figured that out already)

Your dr sounds very good. Hyperparathyroidism is another one of those things that often gets dismissed because the dr lacks enough knowledge because it's not very common. As far as I know (and I'm not in any way a medical professional, mind you) the only way to fix it is to get it removed surgically, which (from what I've read) isn't that big of a deal, you're in and out the same day. I forget the exact details, but there is an interaction between calcium, vitamin D and PTH, and with hyperparathyroidism you get too much PTH which makes your body extract too much calcium and "use up" the vitamin D. The vitamin D is needed to extract the calcium, and the low vit D can be seen as the body's response to too much calcium, and in this case taking additional D will indeed increase the level of calcium. (There's a section on that website that talks about vitamin D too) Take what I write here with a grain of salt as there may be things I've gotten wrong, forgotten or not understood properly.

This is not, of course, to make you more worried :) As you say, just take it a day at a time, you don't know anything for sure until you do.
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