Vitamin Experts / Dr's Out There? Advice Needed!

[Ally T]

Some of you know I have had issues with hair loss & re-growth in the past. It fell out quite harshly (shiny scalp under harsh lights) last Autumn & in November the Dr did blood tests & found I had very low levels of Vitamin D. No surprise there, in the North of the UK heading into winter!

She put me on a supplement of 800 International Units of Vit D, taken 3 times each day for a month, and following on from that, a maintenance supplement of 35iu each day. Within 5 days of starting the 800 dose, my hair stopped shedding completely, as in, literally no hair fall at all during washing. By February I had fully recovered, thick roots about 2 inches long.

About 3 months ago, in the middle of a hot UK summer, I noticed it was feeling thin at root level again. I saw my Dr 6 weeks ago, who refused to blood test, said there's no way I'd be low on D at this time of year, looked under a microscope at my increasingly visible scalp & said "It all looks fine to me! Perhaps lay off the hair colour for a while as that can make your hair shed." I felt COMPLETELY fobbed off.

Now, some weeks on from that, my hair has continued to shed, and I mean the teeny, fine, pointy end new growth hairs that are only an inch or so long. My roots are thinner, my hair has lost volume & the dreaded shiny scalp is back. My Dr told me during the fobbing off that I can safely take 60iu of Vit D daily, which I have done. But I don't think this is enough as I am still shedding. A lot.

So my question is, how much Vit D supplement is it safe to take on a long term daily basis, or even just safe to take for a 2 month period to see if I am right & the shedding stops? I have battled this SO many times, it's depressing. But... it recovers, so I am not balding.

I know it's only hair & there are far more worse issues to face in life, but can any professionals chime in & advise??

 

[BlingDreams]

I’ve known people to initially take 50,000IU a day when deficient (followed by a doctor, of course), and in the US the Vitamin D Council’s recommended dose is 1,000IU per 25lbs body weight. I personally take 5,000IU/day with no issues.

 

[Ally T]

Thank you @ILikeShiny . I'm just wary as I know that if you take too much D, as with anything, there can be detrimental effects. Information on the internet conflicts from country to country, for example the US guidelines for D is quite high, particularly in the more Northern states, where they advise 1000iu daily, but in the U.K. which is even MORE northern, they recommend no more than 25iu a day, long term.

There was too much coincidence between the high D supplement I took & the sudden stopping of any hair loss leading to full recovery. And thinking back, it is usually through the winter months that I have lost a significant amount of hair....

 

[Ellen]

Good grief, hearing stuff like this makes me want to do this ----->

She knows nothing about real Vit. D supplementation. I only know what I know personally because my son ended up with a level of 7. That is not a misprint. The low range cut off is usually 30, but most real health experts say a minimum of 40 up to 75ish. 100 (high cut off) would not hurt you. I bought two books on Vit D, and one was written by a doctor who was a former assistant clinical Professor of Medicine at UCLA. Fascinating book, and he lists studies done with insane amounts taken for long periods of time with no negative side effects. Most people are low, as we've been told for years to stay out of the sun (wrong, a small unprotected dose is good for you) and to lather up when we are. Of course we're all low. And just one FYI, studies are showing that many women who get breast cancer are low in D. (my best friend was) I highly recommend the book, for everyone.

https://www.amazon.com/Power-Vitami...1534794323&sr=8-1&keywords=power+of+vitamin+d

I take 5000 daily to achieve a level of 57. That test was in March at the end of winter when I was not out in the sun. I will have another test done around the end of Sept. to see what it is and if I want to/need to raise my dosage.

For you, I would do 10,000 IU's for a good 2-3 months and then maybe go to 5000. You need to find a functional medicine dr. to work with. Mine can order any test I want, and it's a lot cheaper than going through insurance, that sometimes won't EVER pay for it. If not that, there are places online where you can order what tests you want. Quest Diagnostics is just one of several, do a search.
https://www.questdiagnostics.com/home/patients/scheduling-test/questdirect/order-own-lab-tests.html


Brands matter too, not all are created equal. This is what I am currently taking, and have had the best results with.
https://www.amazon.com/gp/product/B..._rd_t=40701&psc=1&refRID=DWMGMYJVFRYHTTK8SVG1


I hope things work out for you.

 

[Ellen]

Hair loss is one of the symptoms of low D.

 

[Mrs_Strizzle]

I take 3000 iu a day around the calendar as well as actively seek sunshine as often as possible. I live in the South US, middle Georgia specifically and have a pool. The fear of ODing on vitamin D is pretty over blown. I work in Endocrinology and most of our patients are D deficient. That's in an area where everyone tans from about March to Oct.

If you are taking D3 also be mindful to take K2 or eat LOTS of dark leafy greens to prevent calcium deposits in the arterial walls. If you are getting D from the sun, this isn't a problem. Take 100mg of K2 per every 1000 iu of D3.

 

[Ellen]

Yes, I forgot about the K2, thanks Mrs.! I take this. And, it's a fat soluble vitamin, so I take at dinner because that's when I eat the most fat.

https://www.amazon.com/gp/product/B..._rd_t=40701&psc=1&refRID=M6JST73X3VKF5VQQCVM7

 

[Ally T]

Thank you @Ellen and @Mrs_Strizzle Ellen, that's awful about your son being so low & thank goodness he recovered. Well done you for reading up on things.

My GP is sometimes very good & sometimes a waste of time. My husband has no time for her whatsoever, which is s shame as it takes something quite bad for him to get checked anyway, but when he gets told not to worry & crack on, it makes him less likely to seek help

I'm going to order a 1000iu dose capsule from Amazon & see if that helps to slow my loss. If it does, I might up the dose for a couple of months as a temporary thing. I'm quite sick to the back teeth about it because it keeps happening & then recovering, then happening again. I have had full bloods done & have thyroid tests yearly due to family members with under active thyroids, but I am basically text book perfect apart from that one Vit D reading last year, which was showing as 34. And the supplement stopped the hair loss, which can't be a coincidence. Perhaps if I had bloods done every time I shed, it might always be the common denominator, but she is always reluctant to do tests unless really necessary.

 

[Arcadian]

So its possible that you could get tests done on your own. Blood tests (at least in Florida!) really aren't terribly expensive. My last full panel done for under 200 dollars. I also bought extra tests....because they were on sale (yeah sometimes you do what you must!) And I'm one that hates lab work!

Also depending on age (well not always!!) but could be something else too. My vit. D is fine, but I'm losing hair at the moment and my nails look like crap, I sleep like shit, and a few other things are going on. Last blood tests I took my thyroid are in the very low normal range. like BARELY in low normal. Well that tells me something good is NOT happening! I don't think I will have an issue as she's very open, but she may well refer me to an endocrinologist if she's uncomfortable dealing with it.

I would get the blood tests to see first. Its not her getting the tests done but you, and if you want them and have to pay for them, whats it to her? But to be honest, I would not just take massive amounts of Vit D,. I'd want to know and rule out eveything else first.

 

[Ally T]

Thanks @Arcadian for your input on this. I have regular bloods done to keep a check on my thyroid & she does general full blood counts at the same time, and everything is always normal. My hormones were tested last November too as I'm in my mid 40's now, but they were all fine, level & as they should be. Unfortunately with the NHS here in the U.K., you can't really request your own tests - it has to be Dr referral.

I am generally a really healthy person, though I do suffer with many colds & tiredness during the winter months, to the point I have questioned my immunity! However, from what I can read so far, low D can greatly affect immunity, so it all seems to be falling into place a little

 

[Snowdrop13]

I never seem to see the same GP twice at my practice- why not just make an appointment with someone else and get them to do the blood tests? At least then you’ll know where you are with the Vit D. If the levels are ok then you can start looking for another cause for the hair loss, maybe by being referred to a dermatologist.

 

[Ellen]

Thank you @Ellen and @Mrs_Strizzle Ellen, that's awful about your son being so low & thank goodness he recovered. Well done you for reading up on things.

My GP is sometimes very good & sometimes a waste of time. My husband has no time for her whatsoever, which is s shame as it takes something quite bad for him to get checked anyway, but when he gets told not to worry & crack on, it makes him less likely to seek help

I'm going to order a 1000iu dose capsule from Amazon & see if that helps to slow my loss. If it does, I might up the dose for a couple of months as a temporary thing. I'm quite sick to the back teeth about it because it keeps happening & then recovering, then happening again. I have had full bloods done & have thyroid tests yearly due to family members with under active thyroids, but I am basically text book perfect apart from that one Vit D reading last year, which was showing as 34. And the supplement stopped the hair loss, which can't be a coincidence. Perhaps if I had bloods done every time I shed, it might always be the common denominator, but she is always reluctant to do tests unless really necessary.

They all are basically if all they did was go to medical school. Medical school doesn't teach in depth about nutrition.

And my husband's doc is just as bad. Hubby is low also, and here is another FYI, because he is on a statin, and statins lower Vit D. So his doc just keeps renewing his 1000 IU's a day script, but it won't work. It needs to be increased, a lot. But because I am not a dr., hubby won't listen to me. So what can I do?

 

[Ally T]

@Snowdrop13 We have a small practice here as we're fairly isolated, so there are only 2 Dr's at the surgery. Consequently my family see the same one & always make appointments with her for continuity. But a few weeks ago she refused to do bloods & swished me on my way with advice to look into organic hair dye. Yes, really.......

 

[lyra]

My rheumatologist has be on Osto D2 50,000IU once a week. It doesn't help with my hair because I'm on methotrexate, remicade and other meds that can cause hair loss. It seems to help my nails. I can't stomach biotin, which also is supposed to help hair and nails. I'm shocked that your doc won't do tests. That's ridiculous. I had an iron deficiency that defied reason and several meds. I finally had to go to injections. But at least my doc tested me regularly until it actually was normal and stable. You deserve to know exactly what's going on.

 

[Ally T]

@lyra I'm sorry to hear you have to take so many medicines & have hair loss too - that must be tough for you.

Yes, sometimes my Dr can make me feel like a silly hypercondriac (sp?) housewife with too much time on my hands to think up new problems. I hardly visit her for that reason & only go when I have a sat a problem out for a while & tried everything to help myself first!

 

[Demon]

Certainly no expert but I broke my ankle a few years ago and found out my D levels were 19. I took (and still am, most days) 6000-7000 a day, and it took 2 years to get my levels to 49. I think I've read that 10000 units/day is safe.

 

[Ellen]

My rheumatologist has be on Osto D2 50,000IU once a week. It doesn't help with my hair because I'm on methotrexate, remicade and other meds that can cause hair loss. It seems to help my nails. I can't stomach biotin, which also is supposed to help hair and nails. I'm shocked that your doc won't do tests. That's ridiculous. I had an iron deficiency that defied reason and several meds. I finally had to go to injections. But at least my doc tested me regularly until it actually was normal and stable. You deserve to know exactly what's going on.

It also won't help near as well as D3. D2 in synthetic, doesn't work near as well. You can buy D3 at any health food store/pharmacy/Amazon, etc.

Also, you might try this for hair growth. It's good for all sorts of things, but is known for making hair and nails grow like crazy. I take 1/4 tsp a day.
https://www.amazon.com/dp/B000NPKFCA/ref=sxts_sxwds-bia_1_a_it?pf_rd_m=ATVPDKIKX0DER&pf_rd_p=d754fdf0-fd52-4edd-8917-8e65a84c20d5&pd_rd_wg=1doAN&pf_rd_r=BPH2FMGHX2P205H1JVGA&pf_rd_s=desktop-sx-top-slot&pf_rd_t=301&pd_rd_i=B000NPKFCA&pd_rd_w=4CdwX&pf_rd_i=kala+msm&pd_rd_r=ea585935-8033-46f6-9499-7173e0ee4adb&ie=UTF8&qid=1534800677&sr=1&th=1

This is not to be confused with sulfur like in a drug, this is natural. It is a natural ingredient in many foods. (but real D might help also).

 

[LightBright]

+1 on everything I’ve read here. The only way to know if you are deficient is to test your blood levels. You are aiming for 50-75ng/ml. I wouldn’t go back to a physician who won’t test for 25(OH)D at least once a year for someone who has been severely deficient. 1,000 IU per 25 pounds is good, but I’d go a little higher during the winter, for example I take 4500-5000 IU per day, depending on the season. Good luck and good health to you!

 

[missy]

@Alex T have you checked all 4 iron tests? TIBC, % saturation, ferritin and Iron?
Also check your B12.

Be careful with D supplementation..I have successfully supplemented with 4000 IUs plus K2 for over a decade with no issues and all of a sudden I am showing D toxicity so make sure if you do supplement get checked on a regular basis. 1000 IUs is quite safe I believe. Make sure it is D3 that you are supplementing with and make sure to take K2 with it to move it where it needs to go and when you check make sure not to just check the storage D (25 OH) but the active D 1.25.

Please keep us posted and good luck.

 

[LightBright]

@Alex T have you checked all 4 iron tests? TIBC, % saturation, ferritin and Iron?
Also check your B12.

Be careful with D supplementation..I have successfully supplemented with 4000 IUs plus K2 for over a decade with no issues and all of a sudden I am showing D toxicity so make sure if you do supplement get checked on a regular basis. 1000 IUs is quite safe I believe. Make sure it is D3 that you are supplementing with and make sure to take K2 with it to move it where it needs to go and when you check make sure not to just check the storage D (25 OH) but the active D 1.25.

Please keep us posted and good luck.

Hi Missy, what were your levels when they were considered toxicity level? I’m just curious. Ive been told to staying under 100, but have personally tried to stay under 75ng/ml 25(OH)D

 

[missy]

Hi Missy, what were your levels when they were considered toxicity level? I’m just curious. Ive been told to staying under 100, but have personally tried to stay under 75ng/ml 25(OH)D

Hi LightBright, hope you are well. My latest test a few weeks ago showed I was at 110 ng/ml whereas I had never gone over 90 before this and I usually stay around 70 at the 4000 D3 supplementation. And for the first time ever my calcium was at 10.8. And I have been taking K2 with the D3 for well over a decade. So of course I am concerned as is my endocrinologist. My dark thoughts go to kidney/liver issues (AST and ALT raising) but I haven't brought that up to him yet as my next appointment is not until Sept 5th. Anyway he took me off all D for now and it will take a long time to go down so we shall see.

I just share this with all of you as a cautionary message. Supplementation is good in moderation and depending on your genetic makeup and what you can process. So we are all different and no one size fits all and throughout supplementation the individual can change and that is why when one supplements one needs to check their levels at decent intervals.

@Alex T as you might remember I too am losing hair which is what brought me to all of this supplementation. I was B12 deficient and my ferritin was low and I am still having trouble raising either despite supplementation with the correct form. But that is due to my homozygous mutation of MTHFR C677T as well as other SNPs. It is complicated for all of us and we all need to exercise caution with all/any of these supplements.

Another supplement to consider with D3 and K2 is magnesium. I like Magnesium Glycinate. There's a good chart I cannot find atm but when I find it will share it here for you guys re Magnesium.

Hang in there and I am here for you if you have any other questions. XO.

 

[HappyNewLife]

I take 5000iui daily.

A couple years ago about 60-70% of my hair fell out, it was devastating. Since being on thyroid supplements (as well as VitD and spironolactone), it no longer falls out. Have you had your thyroid tested?

Also, my hair didn't grow back on its own. I've been using Rogaine foam for the past 11 months and it has totally grown back. It also grew back extremely curly, but that's neither here nor there

 

[TooPatient]

I take 5,000iu twice per day. My level was still in the low side 6 months ago so I went from once to twice. Getting my levels all checked again this week so will be watching to see how it looks now. Don't want to overshoot!

 

[luv2sparkle]

@Ellen, thank you for the book recommendation you listed above. I ordered it for my kindle and will start it tonight. I love research as well. I wish we knew each other in real life. I would love to have a cup of coffee or tea with you and talk so many things through.

 

[caf]

You might look into Folic acid and biotin in addition to the D and K. Like Lyra above, I’m on some follicle challenging drugs for RA. Good luck!

 

[Ally T]

Thank you, everyone! My yearly bloods have always shown perfect levels of B12, iron, thyroid function etc. As I'm a bleeder (Von Willebrands) she always tests for those types of things with every bloods she has done. On occasion, but not for 5 years or more, I have been low on iron, but I'm very good at keeping that in check with diet & a good all round multi vitamin.

The low D has been the only thing that has come back in red for many years, and as I said, once that was supplemented, my hair completely stopped shedding & re-grew beautifully. The fact that we are less than a year on & my hair is thinning again is what's led me to ask on here about safe levels. I'm a wuss & generally stay away from all medicines! @missy I have read about vitamin toxicity, which is another reason for me to stay away from medicines! I hope you can get that sorted out & keep us posted.

It's worth noting that on the occasions where my hair has been thinner, I have also had the odd bald patch appear in an eye brow. These recover quickly, but I had no patchy eye brows either when on the D, which is what is leading my current thoughts. I had a baldy eye brow a month ago which has since filled in again, for the first time since last Nov.

I have ordered 1000iu dose of D3 to try for a couple of months. I will also take a picture looking down on the top of my scalp in sunlight, for the Dr's reference should I need to go back. The last one I took a few months back (which was just part of a conversation with @Phoenix) showed a lovely scalp coverage. At least that way I have evidence to show her & a record of Vit D to shove in her dismissive, too-busy-for-bored-housewives face!

 

[Ellen]

I wanted to post this from the book I linked earlier. Quoting the good doctor.

"I have seen several individuals who have been self administering a daily dose of Vit D3 as 15,000 to 30,000IU for several years. Their 25 (OH) vit D level often gets about 100 ng/ml, but less than 130 ng/ml. None of them have experienced any Vit D toxicity. Their calcium in the blood remains in the normal range.

How Frequent Is Vitamin D Toxicity?

Extremely rare. In medical literature, cases of Vitamin D toxicity are rare.

Most of my patients take a daily vitamin D3 dose of 5000IU, to 15,000IU (125 mcg to 375 mcg). I check vitamin D level in all of my patients and have been doing so over the last 13 years. In the last 15 years, I haven't seen a single case of Vitamin D toxicity in my patients while they are on Vitamin D3 or D2 supplementation! Most of these patients have a level of 25 (OH) vitamin D less than 100 ng/ml. Rarely, I see someone with a level above 100 ng/ml (250 nmol/L), but less than 130 ng/ml (325 nmol/L). Even in these patients, blood calcium is almost always normal.

Rarely I see a patient with a slight increase in calcium level above the normal limit. Simply reducing calcium intake brings the calcium back into the normal range in these patients. I don't consider this slight increase in the calcium level as a case of Vitamin D toxicity."


I post this to put people at ease, it's pretty hard to get too much.

Missy, I wanted to say this before but hesitated, I think you are indeed just a rare case. And I personally think it's because you have so many other issues going on, which I pray you get resolved. {{{hugs}}}

 

[Ellen]

@Ellen, thank you for the book recommendation you listed above. I ordered it for my kindle and will start it tonight. I love research as well. I wish we knew each other in real life. I would love to have a cup of coffee or tea with you and talk so many things through.

Wow, that is one of the sweetest things I've heard in awhile Luv. Thank you so very much, I feel the same.

And I'm so glad you got the book! I wish everyone would. I never had a CLUE how important Vit D was until all that happened with my son.

 

[Ellen]

I have ordered 1000iu dose of D3 to try for a couple of months. I will also take a picture looking down on the top of my scalp in sunlight, for the Dr's reference should I need to go back. The last one I took a few months back (which was just part of a conversation with @Phoenix) showed a lovely scalp coverage. At least that way I have evidence to show her & a record of Vit D to shove in her dismissive, too-busy-for-bored-housewives face!

Great idea. I find it amazing (among a whole lot of other words) how dismissive doctors can be. We really ARE on our own at times.

 

[DAF]

I have taken 5,000 IU of D3 daily for years and my levels are barely normal. Someone once told me that although 30 is the lower level of normal, you really should be around 45-50 for optimal effect. D3 also is believed to be a cancer preventative as well. I live in NJ, a little south of your location, and stay out of the sun because it aggravates my rosacea.