Author Topic: Weird pain from low vitamin D?  (Read 537 times)

Maria3667

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Weird pain from low vitamin D?
« on: April 12, 2019, 12:26:21 PM »
Hi everyone,

I've had these weird muscle aches and joint pains I attributed to Sjogren's. But supplements like curcuma, MSM or Slippery Elm don't help.

After 7 appointments my physiotherapist referred me back to my GP. All blood work was within range. But I noticed vitamin D was at 33 nmol (10 ng), which is not considered too low in my country.

However, I am incapacitated from driving and usual activities due to severe aches in shoulders, arms, and feel hard knots in my muscles.

So what do you think? Is it too low? Should I start supplementing and if so, by how much?

Thanks for your input!
« Last Edit: April 13, 2019, 01:04:58 AM by Maria3667 »
51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex

Linda196

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Re: Weird pain from low vitamin D?
« Reply #1 on: April 12, 2019, 01:04:53 PM »
Do you know if the test done was for 25-hydroxyvitamin D or 1,25 dihydroxyvitamin D? They have different normal ranges. There's a lot of variation in normal values, but most experts agree that anyone with a 25-OHD level of less than 15 ng/mL or 37.5 nmol/L (depending on the units reported by a lab) needs more vitamin D.

Like any other lab value, some people will be symptomatic at low normal, while others can be asymptomatic at very low levels, just look at how individuals respond to various TSH levels!
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Maria3667

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Re: Weird pain from low vitamin D?
« Reply #2 on: April 12, 2019, 01:32:23 PM »
Hi Linda,

On the form it reads 250H, does that make sense?
51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex

Linda196

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Re: Weird pain from low vitamin D?
« Reply #3 on: April 12, 2019, 02:05:51 PM »
It sounds like a different way of writing 25-hydroxy vitamin D, so it falls in the range of recommended supplementation. I've always had normal levels, but I take 1000 UI daily during the summer and 2000 UI daily in our long dark Canadian winters LOL
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Maria3667

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Re: Weird pain from low vitamin D?
« Reply #4 on: April 12, 2019, 04:24:22 PM »
Correction, it's 25OH (not 25-zero-H). So it actually is the 25-hydroxyvitamin D. In between brackets it reads that according to the Institute for Medicine (do they mean 'of'?), the Dietary Reference Intake for vit. D should at least be 50 nmol, which means my blood level falls 17 points short.

Know what you mean about long dark winters, depending on your location we might be on approx. the same latitude (Holland is on 52nd).

The highest dosage I have at present is only 400 IU. Any side effects for you on 2.000 IU in winter?

Thanks for your reply!
« Last Edit: April 13, 2019, 01:07:14 AM by Maria3667 »
51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex

Linda196

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Re: Weird pain from low vitamin D?
« Reply #5 on: April 13, 2019, 10:32:41 AM »
You're actually slightly farther north, the area of Eastern Canada where I live sits at approximately 45 o latitude.

I haven't noticed any adverse effects from the increased dose of Vitamin D, and several years ago, the highest OTC dose available here was 400 IU, Probably 10 to 12 years ago 1000 IU tablets became readily available because many doctors were recommending increasing doses, and my previous (now retired) GP told me he had several patients on up to 5000 IU daily during the winter months.
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Maria3667

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Re: Weird pain from low vitamin D?
« Reply #6 on: April 14, 2019, 02:33:14 PM »
Weird thing is, even the low dose of 400 IU gives me dry painful eyes, headache and hot flashes. What's up with that? Shouldn't my body welcome the supplement as I'm deficient? This is so confusing!

Good for you you only feel the benefits!

Any advice?


51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex

irish

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Re: Weird pain from low vitamin D?
« Reply #7 on: April 14, 2019, 03:58:27 PM »
Maybe your body is telling you not to take the Vit D. I don't know if you have talked to your doctor about your test results yet. If you are taking a small amount of Vit D the issues you are having may not be from the Vit D at all. Im thinking some professional opinion would be good.

In the USA if one has low Vit D we are started out on high dosages. I had to take 50,000 units once a week for two weeks and then I think it was 5000 units a day for a certain length of time. I have been on 2000 units for about 8 years and have blood work done a couple of times a year. It has taken this long for my Vit D to reach around 35. This is a vitamin that needs to be followed by a doctor. Usually the blood work goes up slowly, but I think it may be dangerous to get the blood work too high. Good luck Irish

Maria3667

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Re: Weird pain from low vitamin D?
« Reply #8 on: April 15, 2019, 06:38:07 AM »
Hi Irish,

Wonder why they supplement so high straight off?

If my body has been depleted of vitamin D3 for who knows how long, maybe receptors are damaged and need time to readjust?

Either that, or I'm allergic to animal derived D3 (lanolin). Mutton makes me sick to my stomach so maybe there's a correlation... Hoping a plant based alternative will be better.

Also, because of the similarity in symptoms, could my hypothyroidism (and maybe Sjogren's too) be caused by vit. D3 deficiency? Wishful thinking here...  ;)
« Last Edit: April 15, 2019, 11:42:47 AM by Maria3667 »
51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex

irish

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Re: Weird pain from low vitamin D?
« Reply #9 on: April 15, 2019, 04:47:19 PM »
Im thinking this is something that needs to be addressed with the doctor. I have heard that taking too much Vid D can be harmful. Everyone is is dfferent. The reason for taking the high dose Vit D at the beginning is to increase the blood level of vit D before going on the lower dosage. I think the researchers have worked out a way to administer the Vit D inn US as this is pretty much the standard way for most people. Generally it takes a long time to increase the vit D but because everyone is different there needs to be a doctor overseeing the administration and the blood testing.

The hypothyroid is caused by the insufficient production of the thyroid hormone. The older I get the more I lear about the thyroid gland and all it does to keep our body running. So intricate and involved. Irish

Linda196

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Re: Weird pain from low vitamin D?
« Reply #10 on: April 16, 2019, 04:06:43 AM »
Vitamin D comes in two formulas, The one used to supplement at RX strength doses, like 50,000 IU, is Vitamin D2, while the OTC variety, with doses from 400 to 1000 IU, is Vitamin D3.

To state it really simply, D3 is produced by your skin in response to sunlight (effectively a hormone) while D2 is produced by plants following sun exposure, and they are metabolized differently, providing different resulting calcifediol  in the blood, which is what your doctor measures.

Some endocrinologists no longer order high level D2, preferring to use more D3 over longer periods since it is felt to provide better results.
Quote
Most studies show that vitamin D3 is more effective than vitamin D2 at raising blood levels of calcifediol.
For example, one study in 32 older women found that a single dose of vitamin D3 was nearly twice as effective as vitamin D2 at raising calcifediol levels.
m(excerpt from linked article)

https://www.healthline.com/nutrition/vitamin-d2-vs-d3#section2
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Maria3667

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Re: Weird pain from low vitamin D?
« Reply #11 on: April 16, 2019, 03:10:15 PM »
Thanks Irish & Linda for explaining  :)

Yesterday I switched to plant based D3 which hasn't given me eyepain or headache, so I seem to tolerate it better.

For now treading carefully seeing my previous adverse reaction and sticking to 800 IU daily. If all goes well I will slowly proceed to higher dosages.

Unfortunately the aches in muscles & joints are still there, but it's early days yet....
« Last Edit: April 16, 2019, 03:12:30 PM by Maria3667 »
51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex

Maria3667

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Re: Weird pain from low vitamin D?
« Reply #12 on: April 20, 2019, 01:13:05 AM »
Unfortunately I also get dry eye pain from plant based D3, even though less intense and slower than from animal based D3. To my dismay, I also started to fret over tiny incidents I would normally shrug off. To top it all, D3 also makes dry mouth & constipation worse.

So I've quit using the supplement for now and will try to obtain as much natural D3 from food sources like fish, eggs, beans, mushrooms and soy as I can. Also put on some shorts yesterday and had a bike ride in the sunshine yesterday, so maybe that'll help raise levels too...
« Last Edit: April 20, 2019, 01:14:45 AM by Maria3667 »
51. DES-daughter, GAD, Lyme's ('98), Sjogren's ('03), hypothyroid ('04), osteoarthritis ('16), Blepharitis ('18), bilateral Frozen Shoulder ('19), pilocarpine, thyroid hormones, 25mg quetiapine, low dose testosterone. Endometriosis, cherry angiomas. Allergies: nickle, methylisothiazolinone, latex