Vitamin B12 and severe symptoms

[wintermom]

Does anyone have experiences dealing with low B12 to the point of getting symptoms like tingling in the hands, vision problems and balance issues, along with the other symptoms like fatigue, and brain fog. My ds is currently experiencing all of these symptoms which are even worsening since he has been taking a B12 pill for 2 weeks. 

I'm wondering whether anyone has had more success with a B12 injection vs a pill? A little googling shows that there are also B12 nasal gel and nasal spray. 

One complicating issue for my ds is that has Type 1 diabetes. Another quick google search shows that people with type 1 diabetes have a higher risk of developing vit B12 deficiency, and that "B12 deficiency has a multifaceted relationship with diabetes." 

Well praise the Lord for google! I'll definitely be researching this and be more informed for my ds's next doctor's appointment. It's been lackluster so far, but at least they identified that B12 was a likely issue. 

[prairiewindmomma]

B12 shots = superior absorption. You usually feel better within 24h, and you only have to go in every 3-6 months. You can also do a shot to jump start you and then maintain with pills.

The question I’d be asking is if there is something easily explaining why his b12 is low. The diabetes tie is to the drug metformin, so unless he is on metformin or is vegan, I’d dig deeper on that one.

[KSera]

I have a kid with low B12, but he has other things going on so that it’s hard to know which symptoms are related to what, but I don’t think his B12 has been low enough to the point of causing neuropathy symptoms. (but he does seem to have some neuropathy from a different condition, so it’s confusing) In any case, I wanted to know whether it seems like your son has any increased anxiety with the new B12 supplement? If so, it may be the specific form of B12. If it’s just that he’s not absorbing it, I would be looking at injections. Actually, given as bad as his symptoms are, I’d be looking at jumpstarting things with injections unless there’s some reason that’s contraindicated. I’d want to know the form of B12 i. the injection was a form that he tolerated without a spike in anxiety first. 

[prairiewindmomma]

I’ll also add that unless you definitively know it’s a b12 trigger, keep digging as all of those symptoms also line up with cerebellar brain lesions/tumors or MS.

[Heartstrings]

Does he have the mutation that means he needs methylated b12?   Mfthr? If he does and you aren’t using the right one that could be causing problems.  

[alysee]

I would also ask about Celiac disease. It's an autoimmune disease that a lot of T1 diabetics seem to get. My B12 deficiency never went away until I was diagnosed with Celiac Disease because my intestines couldn't absorb the nutrient from the damage. 

[scholastica]

56 minutes ago, Heartstrings said:

Does he have the mutation that means he needs methylated b12?   Mfthr? If he does and you aren’t using the right one that could be causing problems.  

That’s for folate, I believe, not B12. 
 

Get a high quality liquid sublingual B12. It’s absorbed more easily. I’d try that before injection.

[Spryte]

B12 shots were good for me. I think it was a 6 month period — huge help.

[Corraleno]

50 minutes ago, scholastica said:

That’s for folate, I believe, not B12. 
 

Get a high quality liquid sublingual B12. It’s absorbed more easily. I’d try that before injection.

It's also true for B12. I have the MTHFR mutation and I take methylcobalamin instead of cyanocobalamin. 

[wintermom]

2 hours ago, prairiewindmomma said:

B12 shots = superior absorption. You usually feel better within 24h, and you only have to go in every 3-6 months. You can also do a shot to jump start you and then maintain with pills.

The question I’d be asking is if there is something easily explaining why his b12 is low. The diabetes tie is to the drug metformin, so unless he is on metformin or is vegan, I’d dig deeper on that one.

Some of the websites I've seen state that the choice of shot or pill depends on the reason for the deficiency - which we don't know yet. I agree, that it would be worth it to dig deeper into why his b12 is low. 

[wintermom]

1 hour ago, Heartstrings said:

Does he have the mutation that means he needs methylated b12?   Mfthr? If he does and you aren’t using the right one that could be causing problems.  

I have no idea. I will check what kind of b12 he's been using. I have the methylated b12 that I can start him on.

[wintermom]

1 hour ago, alysee said:

I would also ask about Celiac disease. It's an autoimmune disease that a lot of T1 diabetics seem to get. My B12 deficiency never went away until I was diagnosed with Celiac Disease because my intestines couldn't absorb the nutrient from the damage. 

Thanks! Good point. I'll look into this. 

[wintermom]

3 hours ago, prairiewindmomma said:

I’ll also add that unless you definitively know it’s a b12 trigger, keep digging as all of those symptoms also line up with cerebellar brain lesions/tumors or MS.

That's part of the problem, as he had a very bad concussion/brain injury 4 years ago, and the symptoms never went away entirely. But getting his current b12 levels through blood work is a good idea.

[prairiewindmomma]

9 minutes ago, wintermom said:

Some of the websites I've seen state that the choice of shot or pill depends on the reason for the deficiency - which we don't know yet. I agree, that it would be worth it to dig deeper into why his b12 is low. 

I think the thought process is that if you know gut impairment is an issue like with people with celiac, you pretty much are stuck with shots. Pills can be an option otherwise. But in reality, if you’re dealing with neuropathy in a kid….why wouldnt you do a shot and get a more immediate recovery? 
 

I hem and haw over all kinds of medical stuff…but not neurological symptoms. Get the shot, and if he doesnt see pretty darn near instantaneous relief, push hard for answers.

[prairiewindmomma]

We just typed over each other..I now see the history of a TBI.

[prairiewindmomma]

Re: balance and vision issues, has he done vision therapy yet? Dd’s brain tumor was effectively a TBI. Most of the other patients were concussion patients at the rehab place, but vestibular and vision therapy sometimes need tuneups.

[wintermom]

2 minutes ago, prairiewindmomma said:

Re: balance and vision issues, has he done vision therapy yet? Dd’s brain tumor was effectively a TBI. Most of the other patients were concussion patients at the rehab place, but vestibular and vision therapy sometimes need tuneups.

These are very recent symptoms, and don't seem related to the original head injury. Might be something to ask the eye doctor he's seeing soon.

[prairiewindmomma]

Honestly…have you talked to his primary dr about these new symptoms?  I realize all of the dysautonomia connected to long covid has muddied the waters, but pre-2019, these symptoms would have had me and mine in an ER asking for a head CT to rule out brain tumor so that we ruled out big and scary upfront and could take our time sorting out the rest. New neurological stuff is concerning. I thought you were talking about ongoing stuff continuous from the concussion.

[KSera]

16 minutes ago, wintermom said:

I have no idea. I will check what kind of b12 he's been using. I have the methylated b12 that I can start him on.

And if the one he’s taking is already methylated, you could try hydroxycobalmin instead. 

[GoVanGogh]

I have celiac (and several other autoimmune), plus Parkinson’s. I struggle with low B12 constantly. I have to consistently take B12 supplements. I should really see about a shot. I do have ongoing balance and neuropathy issues and neuro monitors my B12 because he wants to see if I can get my B12 levels up high enough if some of my issues go away. Taking vitamins is one thing I struggle with so I have not been good about consistency. My last labs were back down to within a point of being flagged. Same with vitamin D. 
 

I have read that B12 is one that almost all Americans - not just vegans or vegetarians - are now very low in, as feedlot animals do not eat the same diet as grazed livestock so the animals are deficient and that passes on to consumers. 

[wintermom]

4 minutes ago, prairiewindmomma said:

Honestly…have you talked to his primary dr about these new symptoms?  I realize all of the dysautonomia connected to long covid has muddied the waters, but pre-2019, these symptoms would have had me and mine in an ER asking for a head CT to rule out brain tumor so that we ruled out big and scary upfront and could take our time sorting out the rest. New neurological stuff is concerning. I thought you were talking about ongoing stuff continuous from the concussion.

He's had an MRI within the last 2 years. Believe me, we're working with a concussion clinic and doing all we can. I was in the ER today, hoping to get a CT scan, but with the heat wave we had today filling up the ER, and my ds not able to wait for 4 yrs, it wasn't possible. We do what we can - your tone is getting a little too aggressive for me right now. 

Edited June 20 by wintermom

[prairiewindmomma]

Sorry, not meaning to trigger…it’s hard to adequately address a post when details trickle through. I’ll bow out.

[Catwoman]

@wintermom I don't have any information for you, but I'm so sorry your ds is having such scary and uncomfortable symptoms! I hope you're able to get to the bottom of what's going on very soon, because you must be very worried.  It will probably turn out to be something that's simple and easily remedied, but waiting for answers is HARD!

I wish I had some ideas that would help, but I'll send lots of prayers your way! 

Edited June 20 by Catwoman

[KidsHappen]

Yes, I had severely low B12 to the point of permanent disability. Mine was due to long term use of a PPI and waiting too long to get diagnosed. By the time I went to the hospital I was paralyzed from the waist down and from elbows to hands, unable to urinate or have BMs, complete loss of balance and coordination, inability to talk and so much more. I had been tested by my doctor about three months prior to this point and knew that my B12 was extremely low and that I should be taking it but didn't realize how important it was. By the time I got to the hospital they were administering B12 three different ways. I continued with shots and sublingual for 6 months and then sublingual until this day. Some of my nerves were permanently damaged and will never recover. This was 4 years ago now and I am still pretty much housebound and bedridden. They are still testing for other issues because this was so devastating. I was prescribed the methyl form. If you suspect this get him in right away and get both shots and sublingual. If you have any other questions feel free to ask.

[wintermom]

3 minutes ago, Catwoman said:

@wintermom I don't have any information for you, but I'm so sorry your ds is having such scary and uncomfortable symptoms! I hope you're able to get to the bottom of what's going on very soon, because you must be very worried.  

I wish I had some ideas that would help, but I'll send lots of prayers your way! 

Thanks so much for your support! 

6 minutes ago, prairiewindmomma said:

Sorry, not meaning to trigger…it’s hard to adequately address a post when details trickle through. I’ll bow out.

It's been a very long, hard 4 years, with no end in sight. One thing after another seems to pop up, and in between there is the mental health issues. I could list pages of stuff we've done, but the focus of this post was b12. I appreciate your suggestons, just need something a little more gentle.

[Catwoman]

2 minutes ago, wintermom said:

Thanks so much for your support! 

It's been a very long, hard 4 years, with no end in sight. One thing after another seems to pop up, and in between there is the mental health issues. I could list pages of stuff we've done, but the focus of this post was b12. I appreciate your suggestons, just need something a little more gentle.

The worst thing is that when you have been dealing with one issue after another for such a long time, it's hard to believe that there will ever be a simple solution to anything, but it sounds like maybe the b12 shot might be a logical next step, assuming there's no down side to trying it. 

I tried the methylated sublingual liquid b12 a few years ago, and the brand had great reviews, but it did absolutely nothing for me, so I'm hoping you'll get some specific brand name suggestions if you decide to try the sublingual instead of the shot. I wish I could remember the name of the brand I used that was worthless to me, but I must have bought it in a health food store and not on Amazon, because I just checked my old Amazon orders and couldn't find it. I was hoping I could at least tell you at least one thing not to buy, because there are so many options out there and so many fake reviews.

Right now, I'm just taking some Thorne B-complex vitamins, but I don't have any known deficiency, so I have no idea if they would be at all helpful for your son. This is what I take: https://www.amazon.com/gp/product/B0797JXKL9/ref=ppx_yo_dt_b_search_asin_image?ie=UTF8&psc=1   I would assume your son needs something way better than what I'm taking, but I do notice a difference in how I feel when I take them versus when I forget to take them for a few days, so I figured I would mention them anyway. 

[KidsHappen]

One thing is that I take 5000 mcg. daily which is higher than your average dose. Also I was told that if you need to raise your levels quickly then shots are more effective but if you are just your average person that is a little low or just trying to maintain your levels then sublingual tabs are just as effective. I would definitely have his levels checked as soon as possible though.

[wintermom]

Thank you all so much for chiming in with your suggestions and own lived experiences! This has all been so helpful.

Trying to keep my head above the water and not drown, so that I can be here to support my ds is challenging. Just when I think my brain can handle one more thing to look up, I realize that I need a break. 

Fingers crossed that this is going to be one of the easy things to fix for ds in this exhausting journey. 

[wintermom]

1 hour ago, KidsHappen said:

One thing is that I take 5000 mcg. daily which is higher than your average dose. Also I was told that if you need to raise your levels quickly then shots are more effective but if you are just your average person that is a little low or just trying to maintain your levels then sublingual tabs are just as effective. I would definitely have his levels checked as soon as possible though.

Thank you so much for sharing your story. I'm so sorry you have to deal with this on a daily basis. I will definitely be getting ds in asap to get a b12 shot and give him a big boost. He sees his GP next week, and I'll request that she run bloodwork then, as well as a blood test for celiac, and go from there.

[wintermom]

4 hours ago, GoVanGogh said:

I have celiac (and several other autoimmune), plus Parkinson’s. I struggle with low B12 constantly. I have to consistently take B12 supplements. I should really see about a shot. I do have ongoing balance and neuropathy issues and neuro monitors my B12 because he wants to see if I can get my B12 levels up high enough if some of my issues go away. Taking vitamins is one thing I struggle with so I have not been good about consistency. My last labs were back down to within a point of being flagged. Same with vitamin D. 
 

I have read that B12 is one that almost all Americans - not just vegans or vegetarians - are now very low in, as feedlot animals do not eat the same diet as grazed livestock so the animals are deficient and that passes on to consumers. 

So sorry that you're facing all these medical issues. Trying to manage to stay on top of everything with the complexities of the issues must be tiring. 

Interesting to hear about b12 being low for so many people. I knew that it was common in my own family, but I didn't realize it was so widespread.

[kbutton]

Pernicious anemia is one cause for low B12, and it’s autoimmune. It’s hard to get it diagnosed.

That said, I was having some mild symptoms (like tingling) that can go with B12 deficiency, but they went away when I started taking more magnesium for migraines and muscle cramps. So…sometimes it’s hard to know what is what.

 

[PeterPan]

If the b12 is a form that doesn't fit his genetics and isn't being absorbed, then what you're seeing with the increase in symptoms could be in parallel, not because of the supplement but rather *in spite* of the supplement. It would definitely be informative to try a sublingual methylb12 pronto and see what happens. You said you had one. If it doesn't improve the symptoms pronto, amazon or your grocery store should have something. I think the form they inject is a methyl.

If his b12 is that low, his iron could very well be low as well, which would contribute to muscle weakness, fatigue, brain fog. Covid is known to drain zinc and iron, and of course the zinc and copper it balances with are necessary along with the b12 for iron absorption. 

Zinc is very inexpensive and worth titrating up till you get a good dose for him. Copper you need in very limited amounts. I suggest trying a supplement with a SMALL amount, like the Mercola selenium that has just .25mg copper and taking it maybe every other day. You could take it daily but only for a short while, then back off. Or take a larger copper dose (2mg) but space it out to every 3-7 days. The iron I did after covid I did daily but only for a few days. Then I backed off again to maybe once a week taken along with the copper, b12, vitamin C, etc. to help it absorb. 

You want to find doses that let all these things balance in your body. So you don't go crazy but just take a bit, see what happens. Mushrooms are a good source of trace minerals, so that's another way to get them in small amounts. 

It's good that you're talking with the doctor.  

Edited June 20 by PeterPan

[wintermom]

13 minutes ago, PeterPan said:

It's good that you're talking with the doctor.  

Yes and no. I have to be careful how many "things" I bring up in a 15 min appointment. I'm actually exploring getting ds into a collaborative-type of community health centre I just found out about. The doctors are salaried employees vs paid by client. They actually talk to each other to share ideas and experiences, and they LIKE complex medical cases. Ds seems very interested. 😄

[kbutton]

Regarding methyl b12, I keep hearing that it doesn’t hurt people who can take the more traditional form, but I swear it makes me not sleep, and it flairs my mast cell stuff. I do run low when they test my levels, even when I take a multi with good amounts of b vitamins.

I wouldn’t borrow trouble for your son, but be aware that some people are sensitive even to healthy things in case he were to have what seems like a strange outcome. 

 

[KSera]

12 minutes ago, kbutton said:

Regarding methyl b12, I keep hearing that it doesn’t hurt people who can take the more traditional form, but I swear it makes me not sleep, and it flairs my mast cell stuff. I do run low when they test my levels, even when I take a multi with good amounts of b vitamins.

I wouldn’t borrow trouble for your son, but be aware that some people are sensitive even to healthy things in case he were to have what seems like a strange outcome. 

 

This had been what I heard, but after my son reacted so badly to methylated b's, I found that there's another gene involved that can cause the excess methyls to be really problematic (slow COMT). We've never run any genetics, but it's clear he can absolutely not take methylated vitamins. Other forms of b vitamins are just fine (and in fact necessary for him).

[kbutton]

14 minutes ago, KSera said:

This had been what I heard, but after my son reacted so badly to methylated b's, I found that there's another gene involved that can cause the excess methyls to be really problematic (slow COMT). We've never run any genetics, but it's clear he can absolutely not take methylated vitamins. Other forms of b vitamins are just fine (and in fact necessary for him).

Oh, this is good to know!

[wintermom]

29 minutes ago, kbutton said:

Regarding methyl b12, I keep hearing that it doesn’t hurt people who can take the more traditional form, but I swear it makes me not sleep, and it flairs my mast cell stuff. I do run low when they test my levels, even when I take a multi with good amounts of b vitamins.

I wouldn’t borrow trouble for your son, but be aware that some people are sensitive even to healthy things in case he were to have what seems like a strange outcome. 

 

 

13 minutes ago, KSera said:

This had been what I heard, but after my son reacted so badly to methylated b's, I found that there's another gene involved that can cause the excess methyls to be really problematic (slow COMT). We've never run any genetics, but it's clear he can absolutely not take methylated vitamins. Other forms of b vitamins are just fine (and in fact necessary for him).

These posts make me lean heavily toward the intramuscular B12 injection, as it's not methylated. I picked it up at the pharmacy today, but ds can't get the shot until the doctor tells us/the pharmacist the dose. We may have to wait for bloodwork results for this. So there is a slight delay, but we are on track to get on top of this asap. 😉 

[kbutton]

17 minutes ago, KSera said:

This had been what I heard, but after my son reacted so badly to methylated b's, I found that there's another gene involved that can cause the excess methyls to be really problematic (slow COMT). We've never run any genetics, but it's clear he can absolutely not take methylated vitamins. Other forms of b vitamins are just fine (and in fact necessary for him).

Two minutes with Dr. Google, and 🤯. I cannot believe that my women’s health practitioner that is really into functional med had been pushing me toward methylated b vitamins—I sound like the poster child for this. (I have been abstaining from all B supplements because my reading suggests that you should be tested only after being off of them for four months.)

[Eos]

My T1D dd has chronically low B12 but we don't have the money for genetic testing. She takes 10,000 mcg most days, mostly for brain fog. She sees her primary FNP soon, maybe I'll suggest she ask about shots.

[wintermom]

1 hour ago, Eos said:

My T1D dd has chronically low B12 but we don't have the money for genetic testing. She takes 10,000 mcg most days, mostly for brain fog. She sees her primary FNP soon, maybe I'll suggest she ask about shots.

Glad it is able to relieve her brain fog. Can't hurt to check out the difference between the shots and pills and see what provides the best results. 

[PeterPan]

5 hours ago, wintermom said:

These posts make me lean heavily toward the intramuscular B12 injection, as it's not methylated.

What I've generally read is 40% of the population has some kind of MTHFR defect, which means a methylated form will be better absorbed. The COMT defect the others mentioned is the complete inverse and results in high methyls and high reactivity to things high in methyls. Headaches, irritability, etc. would be the result. You can also have a mix. 

If you were making a guess why someone would be on b12 and not have their levels go up, an MTHFR defect that affects methylation (activation) would be a pretty reasonable guess. 

You mentioned collaborative practices. There are some docs who specialize in covid who are going concierge, so you pay a fee per month but get unlimited care.

[wintermom]

2 hours ago, PeterPan said:

What I've generally read is 40% of the population has some kind of MTHFR defect, which means a methylated form will be better absorbed. The COMT defect the others mentioned is the complete inverse and results in high methyls and high reactivity to things high in methyls. Headaches, irritability, etc. would be the result. You can also have a mix. 

If you were making a guess why someone would be on b12 and not have their levels go up, an MTHFR defect that affects methylation (activation) would be a pretty reasonable guess. 

You mentioned collaborative practices. There are some docs who specialize in covid who are going concierge, so you pay a fee per month but get unlimited care.

I'm going to hopefully work with our GP to take multiple bloodtests over certain time intervals to monitor ds's b12 levels over time and actually see what is happening. He may have issues in his gut that prevent b12 absorbtion, such as celiac or something else. If b12 doesn't rise, then we can explore why (gut or MTHFR). At the same time, we'll observe what is happening to other vitamin and mineral levels, such as iron, magnesium, folic acid and vit D. If several of these are low and remain low, then we have more evidence that something more general is happening in the gut. This should also help us tweak dosage levels and types of iron, etc. 

Anyway, this is the plan going forward - to be more systematic. Ds's diabetes team RN helped us formulate this plan, and it sounds really good. We will also look into being able to see the bloodtest results ourselves online. Not that we are experts in interpreting the results, but at least we can see what goes up, stays the same, or goes down over regular time intervals. 

Edited June 21 by wintermom

[KSera]

Since he’s actively taking supplements, that will impact his blood test results. My ds’s Dr likes him to stop the b vitamins two weeks before drawing a level, but we discovered he can’t tolerate two weeks off them, so he just stops for a couple days and knows it may inflate his results. 

[wintermom]

2 hours ago, KSera said:

Since he’s actively taking supplements, that will impact his blood test results. My ds’s Dr likes him to stop the b vitamins two weeks before drawing a level, but we discovered he can’t tolerate two weeks off them, so he just stops for a couple days and knows it may inflate his results. 

Yes, I did consider this, and due to the severity of ds's symptoms I didn't want him to go off the b12 supplements at all now. If the b12 levels are really low, like I'm imagining, the bloodwork will still show this. Going forward we can be more systematic and how we prep for bloodwork tests, I figure.

[J-rap]

I had low b12 in a test a few years ago, although I wasn't having symptoms.  But then I learned that one of my children and my father also had low b12!  It seems like it's a genetic thing.  I went on supplements, and was retested again in two months and it was fine.  I take these:

https://www.amazon.com/gp/product/B002BKW1YA/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I don't take them daily anymore, maybe twice/week.

 

[wintermom]

9 hours ago, J-rap said:

I had low b12 in a test a few years ago, although I wasn't having symptoms.  But then I learned that one of my children and my father also had low b12!  It seems like it's a genetic thing.  I went on supplements, and was retested again in two months and it was fine.  I take these:

https://www.amazon.com/gp/product/B002BKW1YA/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I don't take them daily anymore, maybe twice/week.

 

I believe that is correct about the genetic link, but not 100% sure. My dad needed b12 injections and he had a really bad introduction to low b12' though he also had serious issues with his digestive system. Dh's dad had low b12, though he also have T2 diabetes. Dh and I are both on daily doses of b12 just to keep it at bay.

Edited June 22 by wintermom

[Soror]

 

On 6/19/2024 at 7:13 PM, alysee said:

I would also ask about Celiac disease. It's an autoimmune disease that a lot of T1 diabetics seem to get. My B12 deficiency never went away until I was diagnosed with Celiac Disease because my intestines couldn't absorb the nutrient from the damage. 

this was my first thought, especially with the t1D. Autoimmune diseases tend to show up together. Unfortunately, it can take years to get a diagnosis. My friend took years to get a diagnosis with continual severe vitamin deficiencies. They'd test for Celiac and say she didn't have it but it persisted with no answers. Finally, she was able to get a diagnosis. I don't remember the details now but I know for some their bodies don't produce the antibodies that they test.

[PeterPan]

Complete and total aside, have you tried your person's b12? I'm trying my ds' hydroxyb12 (Source Naturals) and even though this thing is supposedly a lozenge it takes FOREVER to dissolve!!! Can't believe it. My Kal adenosylb12 sublingual dissolves very quickly. So I suppose you could see differences from that too. I'm going to switch ds over to Kal if they make the correct form. This is ridiculous.

[wintermom]

1 hour ago, PeterPan said:

Complete and total aside, have you tried your person's b12? I'm trying my ds' hydroxyb12 (Source Naturals) and even though this thing is supposedly a lozenge it takes FOREVER to dissolve!!! Can't believe it. My Kal adenosylb12 sublingual dissolves very quickly. So I suppose you could see differences from that too. I'm going to switch ds over to Kal if they make the correct form. This is ridiculous.

I haven't, but I could. I don't tend to have the patience to wait for them to dissolve. I just end up swallowing them. 😉 

[wintermom]

So ds's GP was REALLY great at the 30 appointment today. We've got a baseline bloodwork plan in place for a variety of vitamins and minerals (B12, D, Iron, Zinc, Calcium) as well a celiac, and then follow-up bloodwork to check changes in levels. She's also getting a referral for a neurologist to help out with his "weird symptom" hands. It turns out it is just the finger tips and no where else; not the palms, back of hands, length of the fingers. It might be nerve damage due to the DKA prior to getting on insulin, which may have lasted months. He's also going to take Magnesium Glycinate, along with more vit D, and Zinc and we'll add in calcium as needed.

Hopefully ds will have some relief from his symptoms soon!