Vitamin D Deficiency

[Christy_D]

My son's blood test came back that he was extremely vitamin D deficient (below 10). It's no wonder since he rarely made it outside in the past year.

Since starting a vitamin D supplement 2 weeks ago he has had improvement. He had the best week he has had in several months last week. He slept normal hours, and had no problems falling asleep. He still woke up every day nauseated but he became functional by noon, instead of 3 -7 in the evening (or some instances not at all). I didn't have to cancel his homebound teachers a single day.

The vitamin D, plus his other meds seems to be helping. I'm keeping my fingers crossed that it just wasn't a fluke and that the vitamin D is the reason.

Hopefully this continues and maybe in the fall he can at least make it to school in the afternoon.

[Aquadiva]

It was just confirmed that my daughter is also vit. D deficient. May I ask what kind and how much vit D your son takes? I got the liquid gel 2000 iu. I figured the liquid would be better than the tablet?? I am so glad to hear that your son has seen improvement. That is great! Any little bit we can get our kids helps!!

May I also ask what other meds your son is taking? We are currenlty trying to find something to help my daughter with the fatigue/dizziness/headaches, but the PCP has been reluctant. We are waiting to get into the adult POTS dr. She is 17. Right now she is only taking metoprolol for POTS.

One thing that really frustrates me is that her ped brushed off the idea of vitamin D (I asked specifically) saying there has been so much "hype" about it lately, and apparently she doesn't agree. But, if she is low, what can a supplement hurt? Another specialist ran the test for us and they will recheck in 3 months.

[Christy_D]

I got the "Finest Natural" brand of D3 at Walgreens. It is a softgel. He is taking 2000 IU per day. My son also used to take Metroprol(?) but it made his resting heart rate go to low, so he was always tired ( his lights were on but he definitely wasn't home).

He currently takes Doxepin -100 mg, we just upped it from 50 mg a month ago, so that also might be helping. He takes .1 mg of fludrocortisone and that keeps his dizziness at bay. The doctor also has him taking Thermatabs to get the extra salt he needs.

My sons symptoms are nausea(this is the one that we are trying to still get under control), dizziness, migraines, hot spells, heavy limbs, brain fog, abdominal pain, sleep issues,fatigue. I probably forgot one or two there are so many. The doxepin has something in it that also helps him sleep.

He takes erythomycin for his gastroparesis. He was also diagnosed with small fiber neuropathy.

From everything I've read, Vitamin D is very important for the nervous system. I get really tired of dismissive doctors. We actually only deal with his two POTs doctors now because every other doctor wants to still label him as having anxiety and trying to ditch school. Even the original cardiologist who diagnosed him with POTS wanted to blame the nausea on anxiety. He didn't know what else to do for him other than fludrocortisone. So we headed to Cleveland to get help.

[gertie]

I'm glad your son is improving. My vit D level is very low also. It helped me sleep better at first but after I took it for awhile it made me too sleepy. I became very lethargic & all I wanted to do was sleep so I had to stop taking it for awhile but I think most people tolerate it well.

[vips]

I too have got vitamin D deficiency (D3 is 11)...Doc has given me 50,000 IU, once per week for 6-8 weeks (initial loading) and 1000 IU thereafter; then re-examine in 3 months. I was dx-ed with POTS following my pneumonia 2 months ago. Have been on more-or-less bed rest due to fatigue and weight loss. Had B12 deficiency also, but supplements have raised it to normal. Took my first Vit-D pill recently. I also hope that vit-D helps in energy and weight loss.

[kitchmill]

I was just told today that I am vitamin D deficient. This was from my primary doc (not my POTS doc) who is checking to see if I also have fibromyalgia or some other condition. She suggested I take 4000 miu a day. I just ran out and bought a bottle of D3 liquid. Each dose is 2000 miu. We'll see how it goes...

[Christy_D]

I was just told today that I am vitamin D deficient. This was from my primary doc (not my POTS doc) who is checking to see if I also have fibromyalgia or some other condition. She suggested I take 4000 miu a day. I just ran out and bought a bottle of D3 liquid. Each dose is 2000 miu. We'll see how it goes...

So far it is helping my son. For several months through the winter until now he had gotten so much worse with his symptoms lasting much longer and more severe. I hope the vitamin D gives you some relief as well.

[Brye]

I just found out today I was vit D deficient as well. I've had horrible memory problems lately, excessive fatigue, trouble focusing and it's been getting progressively worse. I had just been attributing it to POTS brain fog. I saw my primary doctor today to see if he had any suggestions. I started the supplement tonight and I'm hoping it'll help. I ran 2 red lights last week and that was my wake up call to get it checked out!!

Brye

[delphicdragon]

Also D and B12 deficient. Been taking 5000IU of D3 per day and 1000mcg of B12 per day. Didn't notice any difference until I added Folic Acid (400mcgs a day); then I finally started noticing a difference. At this point my D and B12 are both normal and I would have to say I feel a lot better energy-wise. Not sure if it's the D or not, but the last two colds I had did not progress to bronchitis or pneumonia. :-) That's a plus. (Keeping my fingers crossed)

Sara

[Notgivinup]

Also was D deficient.

Can't remember the numbers now, and I made the terrible mistake of LEAVING my medical records with one very busy doctor. I should of gave him copies, but I thought he was going to be my new POTS doc. Now I don't know how to get them back, or how long it will take. Ahhhhhh, just another frustrating thing I have to do.

Anyway, I take 2000 IU. Actually lately I've been forgetting.

[kitchmill]

So, I've been taking the D3 for 2 days now, and I feel like I'm sleeping on my feet. I keep feeling like my BP is really low, even when I'm laying down, but when I take it, it's only the usual low. I actually had to stay home from work today because of this! I feel awful if I get out of bed. This better go away quickly!

[Noreen]

So, I've been taking the D3 for 2 days now, and I feel like I'm sleeping on my feet. I keep feeling like my BP is really low, even when I'm laying down, but when I take it, it's only the usual low. I actually had to stay home from work today because of this! I feel awful if I get out of bed. This better go away quickly!

Hi Kitchmil-

Have your doc write you a script for the once a week loading dose of D then go to 1000 IU bid. My last results were again low despite taking 1000 IU so I opted for the once a week version - happens once a year to 18 months. for me it could be getting nausea and stomach issues or who know?

Our systems are delicate, remember.

hope you feel better soon,

Noreen

[kitchmill]

Thanks for the tip, Noreen. I have to put a call into my doc, but I'm going to wait another week. I have a colonoscopy coming up this week so my diet is all screwed up anyway. I don't want to start taking anything new until after I can go back to eating normally.

[issie]

I too have low Vit D levels. I had been on 5,000 iu for over a year and my levels were still too low. Recently, upped to 8,000 a day. There is really good information on Vit D at the Life Extension web site. (I'm not good with the computer so I don't know how to put the site on here.) But, I've been a member with them for years and the alternative info is the best I've found anywhere. I've read allot too, looking for answers. They do sell their supplements, but you can buy them elsewhere. If you're a member though you can get your blood test alot cheaper than at a doctors office. Then you can call and talk to their doctors and alternative suggestions are given. If you really need to see a doctor, they advise you of that too. When I was on my diagnosis search they told me different things to have the doctors check for. This really came in handy and the doctor was able to rule out a lot of things. I find that my energy levels have improved considerably and I'm finally sleeping better.