Update on Dusty's Matt

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Sounds good, long may it continue! Just a few vials of blood then :shifty-t:. Hope the results are good.
 
Thanks Farmwife, he was still willing to go on a "date" with his mom to dinner and a Broadway show (TapDogs). I guess I better take advantage while I can because most of the time he would rather be with his friends guess that is what I can expect now that he is a teenager
 
Dusty - I have NO doubt you'll whip the GP into shape in no time. :voodoo:

Love, J.
 
Thanks guys, you are the best! :):):)

@hawkeye - the GP retired. We have problems too in the rural areas. I don't think the city suffers with it though.
 
Well all of the results are in barring the Vit C, which was expected. It has been a bit of a journey this time...he had to have some of the tests repeated as they stuffed up with the blood tubes the first time.

I have also done some soul searching since his appointment and decided that I really need to step back. If Matt wasn't going to a local university he would have to be in charge of his own health and so I feel it would be remiss of me not to hand over the reigns now while he still has me close at hand to fall back on should he need it.

I have explained all this to him and told him that I will always be here if he needs me and should he want me to go to any appointments with him he only has to ask, otherwise the decisions and choices that may need to be made are in his hands. The only thing I have asked of him is that he do his own reading and research and whenever he does have a consult that he go in with both his eyes and his mind wide open.

With that all said...

FBC - All well within normal limits except lymphocytes 0.7. They are sitting within their below normal range, considering the Imuran. So all good there. :)

E/LFT's (Serum Chemistry) - All well within normal limits except Albumin (NRR 38-50g/L) 51* and Calcium (NRR 2.13-2.63mmol/L) 2.64*. Both just a snig above normal so may just be a one off.

B12 - 238. So Still at the lower end of normal. This was one of the things that prompted my soul searching. I know Matt was a tad 'thingy' about supplementing so even though I am not happy with the level I have decided it is his responsibility to discuss it with the GP and make the choice as to what needs to be done, if anything.

Folate - (NNR >630 nmol/L) 752

Iron Studies -
Iron - (NRR 10-30 umol/L) 14
T'ferrin (NRR 27-53 umol/L) 30
T. Sat (12-45 %) 24
Ferritin (20-300 ug/L) 71
...All within normal limits but hedging toward the lower end so something to keep an eye on in step with the B12. Matt is aware of this.

Vit D - Normal - 100 nmol/L. We are slowly getting there David, Judith! Continuing to supplement with 2,000iu a day.

ESR - (<30 mm/hr) 3

CRP - (<6.0 mg/L) <4

Vit C - No Result

Calcium - As above

Magnesium - (NRR 0.70-1.00 mmol/L) 0.86

Zinc - (NRR 10-18 umol/L) 9.8*

POH4 - (NRR 0.80-1.40 mmol/L) 1.04

All in all very good results. As I have said, there are some things that I would like to see tweaked but I have armed Matt with the information and it will be up to him to choose what path he follows.

The doctor has asked that he see him next week, as opposed to the week after, to discuss the results.

If you have reached this far then you get one of these!...:medal1:

Dusty. xxx
 
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WAIT! This doersn't mean your leaving us does it? Leaving us and starting your own new forum...Parents of Independent Adults with IBD...and taking your dancing poo with you?
 
Hi Dusty :) Various things:

1. What is the result of the vitamin D?
2. Did you end up having him do the methylmalonic acid test?
3. Like vitamin B12, the magnesium reference range isn't too good if you subscribe to this paper's opinion, which I do. It's excellent reading.
4. The zinc deficiency isn't surprising to me. It's somewhat common in Crohnies and much more prevalent in people with TI resection. Excellent reading on Zinc.
 
Glad to see his results are good! It's such a relief when all is good! :)

And, what a mom!!! I aspire to be you! :worthy:

I so hope when the time comes to loosen those apron strings (and its not now :eek: :lol:) that I can be the calm, reassuring guiding light you are to your kids! :Karl: They're so lucky to have you!!!

But, as Crohnsinct asked... you're not leaving us are you?!?!?!? :eek:

:)
 
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Dusty wouldn't leave us! :)

I know that has to be hard on you to take a step back, but I think it will be good for him. And knowing you are always there and you are always supportive, well, both of your kids are lucky to have such a great mom and support system!

Glad to hear Matt's bloodwork came back good :). Big hugs to you and hose beautiful kids of yours!
 
Glad to hear Matt's results are good. You are wise, and he will do well taking on more of the decisions....he has learnt from the best!
 
I agree that it's important for young adults to take charge of their health and learn to advocate for themselves. That said, I think it can be daunting to speak with a doctor and many adults bring support people with them, as extra eyes and ears.

I don't know how it works in Australia, but in the U.S. my son (19) needs to sign a release to allow doctors to speak with me. He still wants the doctors to talk with me too, but that may be because I am a physician. In any case, you may still want to talk to your son prior to his appt to help him organize his thoughts, write a list of questions etc.

Here's a list of useful questions:
http://my.clevelandclinic.org/patie...appointment/questions-to-ask-your-doctor.aspx
 
Glad all the blood work came back good..:)

Your kids are lucky to have an amazing mum ....:Flower:
 
Thanks guys...:ghug:...I've said it before and I'll say it again...you are the BEST! :thumleft:

Firstly, you are stuck with me for the foreseeable future! It's not that easy to shake off an addiction! :lol:

@xmdmom - I hear you loud and clear. :) I am in the mindset of it being a work in progress and I will remain on alert to any signs that may need a subtle intervention on my part.
We don't need anything signed here, it is verbal consent on the part of the patient.

That leads me into what you are asking David. Matt is a man of very few words. I often have to remind him that he wasn't born with a finite number of words so please feel free to speak openly and voluminously. :lol: So my approach will be to give him the information, with my opinion as I hand it to him :ybiggrin:, and then play it by ear from there.

Is it killing me? Damn straight it is but as I said previously, it would be remiss of me if I didn't give him the tools to be a strong and confident advocate for himself.

David said:
Hi Dusty :) Various things:

1. What is the result of the vitamin D?
100 nmol/L

2. Did you end up having him do the methylmalonic acid test?
No. I spoke with the GP when he did the blood request and suggested to him that it might be prudent to do the test if the current results continue to sit at the lower end of the NRR.
It isn't the only reason but certainly one of the reasons I did my soul searching. Matt is not one for doctors, tests, needles etc and even though he has exceeded my expectations to an incredible degree with the way he has handled everything since his diagnosis I am still very conscious of pushing him too far and shutting down the lines of communication. At this point he does tell me the things that I need to know and I don't wish to loose that.
So with the seed sown with the doctor I will leave it to the doctor and Matt to discuss what may need to done, even if I am present at the appointment.

3. Like vitamin B12, the magnesium reference range isn't too good if you subscribe to this paper's opinion, which I do. It's excellent reading.
Thanks David. :) I will show it to Matt and discuss it with him.

4. The zinc deficiency isn't surprising to me. It's somewhat common in Crohnies and much more prevalent in people with TI resection. Excellent reading on Zinc.
Again, thank you and I shall also show Matt this article. :) I don't why the GP wishes to see him earlier than planned but I am assuming it may be the zinc result? Either way I will start looking for a decent supplement that includes both zinc and magnesium and also see if the GP has any recommendations.
Click to expand...

Thanks again everyone for being here and for who you are. :hug:

Dusty. xxx
 
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Oops, I was misreading the vitamin D line you wrote, sorry about that :) 100 nmol/L is a lot better than he was last time. I forget the exact number last time but I know it made my face scrunch. 100 nmol/L doesn't make me smile, but I'm not scrunching either so yay for progress!

:banana:

I'm sorry I was the grump in the bunch but I had to be talk about him being low end to mildly deficient in as many things as he is. It's likely simply a manifestation of his resection, I just like giving the body every tool it needs to maintain a healthy immune system and overall health.

If he can incorporate foods into his diet that would help with the magnesium, zinc, and iron, (click those) that would be best. I'd be a little wary of a multivitamin but that's just me. A low dose zinc and a separate magnesium supplement might be the next best alternative. Careful with the zinc as zinc toxicity is a very real thing. I'll be curious to see what your GP recommends.
 
Good grief David, you aren't being a grump. :)

Matt's Vit D progression has been 53, 51, 58, 85, 100. So at least we are heading in the right direction! :poop:

I hear you loud and clear mate and would also like to tweak many a thing myself. I have been looking to diet as a way of trying to boost things along so thanks for the added push in that direction. At least by going down that path it is a way that I can have input while at the same time still allowing him to maintain a level independence.

I will update after the appointment next week.

Dusty. xxx
 
Well Matt went to the appointment...ON HIS OWN...:lol:

The GP spoke to him about his zinc deficiency and has prescribed a zinc supplement. He is to have a repeat blood test in 6 weeks so that will link up with his 2 monthly ones.

In the meantime he is looking well and bouncing around the place so you can't ask for more than that!

Dusty. :)
 
Good news- glad he was able to handle the appt by himself.
I goal to achieve for all of us parents.
Good news he is doing well
 
So glad to hear your bouncing baby boy is doing well.:soledance:

Good for you for letting him grow up.:thumright:

Grace however will always need her mommy, RIGHT?:frown:
 
Great to hear Dusty! It is so hard to let them grow up isn't it? MY oldest is 17 so I know some of what you are going through.
 
Thanks guys. :):):)

I'm glad you asked that David cause I know bugger all about supplementing zinc...

It is Zinc Citrate 30mg 1 capsule nocte.

Dusty.xxx
 
:lol: Just after I wrote nocte I went to the wiki and added medication prescribing terms under abbreviations.

Yay! Thanks for that David.

Dusty. :)
 
So great to hear he's doing so well, Dusty!!!! May it continue for ever and ever!! :banana: :banana:
 
Awe Dusty I'm so very very proud of you !!
Oh, and of course Matt too ! LOL

Wtg momma !
You know I'm right there with you with Gabs being 2 hours away and having to do some of her medical visits on her own over there :ywow:


I think we're growing up too ! :soledance:
 
:lol: We surely are T! :)

You would have thought with Sarah taking that step three years ago it would be a breeze this time but nah! I reckon it's harder with Matt cause he is still in the house so the temptation to intervene is never far away! Don't desert me willpower! :lol:

Dusty.
straightjacket.gif
< me in my straight jacket!
 
Calling David. :)

Do have any thoughts on Vit C reference range levels and Crohn's?

Dusty. xxx
 
I'm afraid vitamin C isn't one I've delved very deeply into yet :( I'm happy to do some research for you though if you provide specifics.
 
I don't have the result at hand but IIRC:

35 umol/l (NRR 10-115) Not sure if the value stated is correct.

I was just curious if you felt these reference ranges were a fair statement in the clinical context of CD.

Dusty. :)
 
I know that if someone was lower end and showing any symptoms of deficiency, I'd increase intake. And if someone was iron deficient, I'd increase vitamin C intake as it increases absorption of heme iron.

I did a little poking around and here are a couple old studies:

1. http://www.ncbi.nlm.nih.gov/pubmed/3760522 - Not uncommon for people with Crohn's not to get enough vitamin C in their diet.

2. http://www.ncbi.nlm.nih.gov/pubmed/2702887 - Vitamin C supplementation in Crohn's isn't necessary unless intake is low.

Conversely:

3. http://pmj.bmj.com/content/55/639/26.full.pdf - 7 of 10 Crohn's patients were deficient.

But as for the actual reference range, I haven't seen anything suggesting that it's bad.
 
Thanks for providing those links David. :)

I shall mull things over a wee bit. Please don't feel obliged to research, I will have a look around when I have the time and you have more than enough on you plate.

Dusty. xxx
 
The time for bloods has come again and the results are in:

Haematology: All well within normal limits. Lymphocytes within below normal range.

Chemistry: All well within normal limits.

CRP: 6.2 mg/L (NRR <6) So an ever so slight snig above. I am telling myself it is a one off and will be normal again next time! :eek2: That and listening at every opportunity for a sniffle and a cough! There has been the odd one!

ESR: 6 mm/hr (NRR <30)

B12: 237 pmol/L (NRR 180-740) :yfrown:

Vit D: 106 mnol/L

Zinc: 12.7 umol/L (NRR 10-18)

He looks well and says he feels well so all is good. Hang on! I think I just heard a cough! :lol:

Dusty. :sun:
 
That's awesome Dusty! I'd just assumed this old thread had become NA since Matt is healthy as a horse! What did you come up with per Vit.C?
 
Hey Dusty,

They have found a correlation between CRP and magnesium levels. Not only are people with Crohn's disease more likely to have magnesium deficiency, but magnesium is primarily absorbed in the terminal ileum. Note that the serum magnesium test is pretty much useless in my opinion so sending him off to the doc for that is pointless.

It is REALLY HARD to get the RDA for magnesium in today's western diet. Then with the additional losses and reduced absorption caused by Crohn's disease, in my opinion, just about everyone with Crohn's disease is deficient. In fact, I believe it plays a critical role in the pathogenesis of Crohn's disease, for many.

Nice to see the zinc up a bit.

Not bad on the vitamin D, would still like to see it higher. Thing is, magnesium is a co-factor for vitamin D so that could be affecting that if he is indeed low in Mg.

*walks off muttering about B12*
 
Great job Matt!!!

Pretty soon you'll have to put away your corner rocking chair, Dusty, doesn't look like you'll be needing it any time soon!! :thumright:
 
Way to go Matt!!! I agree with Tesscorm, you may have to evay that corner chair!! Glad to hear he is doing well!
 
Great news! Very interesting about the magnesium... I know PPIs (prevacid, prilosec, etc) can cause lowering of magnesium after chronic use...
 
I love the different range too.

The range for Sarah B12 is (150-700) and Kerry at 13 years the range is (200-700)
:ack::ack:
 
@David:

This was Matt's magnesium in November - (NRR 0.70-1.00 mmol/L) 0.86.

What is the best way to supplement and how much daily?

@Dexky:

I haven't done anything about Vit C as yet. :ack:

Dusty. :heart:
 
Dusty, based upon this paper, Matt is deficient in magnesium. They believe that that reference range is outdated and 0.9 mmol/l should be the lower end.

Taking it one step further, the problem with serum magnesium levels is the body does everything it can to maintain a constant serum magnesium level because it's so critical. To the point of robbing from bone and muscle. As such, serum magnesium is very often normal yet body stores are negative. Getting most doctors to conduct a magnesium test that isn't blood based is really difficult.

Do an experiment. Total up the foods your children eat a day and then figure out their magnesium intake based upon these magnesium rich foods. Then look at the RDA for their age and sex (lower on that page). Then multiply that RDA by say 1.5 because of their resections (magnesium is primarily absorbed in the terminal ileum) and we'll use that as a ROUGH estimate of how much they should be getting per day. That'll help you get an idea if they're getting enough magnesium or not (I'll bet just about anything they're not).

Pretty much any magnesium supplement is ok except magnesium oxide as it isn't absorbed very well. I like to split it over 2-3 times per day in smaller doses. The first paper I referenced suggests 600mg per day.

Supplement magnesium and I bet his CRP goes down and his vitamin D goes up and he does better overall. Increasing dietary sources is also a good idea.
 
Hey David...

If I was to supplement, can you have too much magnesium?

I have been looking at this preparation:

Magnesium Citrate 61.8mg
Magnesium Chelate 23.4mg
Magnesium Aspartate 7.1mg
Magnesium Orotate 6.56mg
Total Elemental Magnesium 98.86mg
​

Well Matt went to the GP about 2 and 1/2 weeks ago because his hernia had reared its ugly head again. This is the hernia that was thought to be an incisional one when it first popped up a few months after surgery. As it was the GP was able to palpate this time round and he said it was inguinal. This doesn't surprise me as Matt had a repair of a right inguinal hernia when he was 12 months old and at the time they (doctors) had changed their thinking on doing both sides at once. Wish they hadn't now! :lol:

So he went for his ultrasound 2 weeks ago and it confirmed he had a left inguinal hernia. Then yesterday he to the GP for follow up. He gave him a referral to a surgeon and to his GI.
Uni has started back up so now all we need to do is work out the best time to organise the appointments. The surgeon is close by so he can pretty fit that in any time but surgery is a whole different matter. As is Port, Matt is fine but he hasn't seen his GI since he was diagnosed so his new GP wants to touch base with him and have him do a long term plan of care. Sounds good to me. :)

Dusty. :heart:
 
Hey Dusty,

You can absolutely take too much magnesium. It'll result in diarrhea. This is a really interesting paper on magnesium absorption. Basically, it shows that the more magnesium you take at a time, the less is absorbed. We've evolved to get a little magnesium from our food and water throughout the day, not get 600mg from the horse pill we take now. Which is why the preparation you have there is very interesting to me. Is that JUST magnesium or does it have other minerals with it as well that you're not listing?

I hadn't realized Matt hasn't seen his GI since diagnosis.
 
Ah okay, thanks David. :)

The preparation is only magnesium as listed.

Matt did see plenty of GI's and and a couple of Crohn's specialists between his diagnosis and surgery and then had a final consult with the team in Sydney 6 weeks post op but nothing since. He hasn't had the need, as such, and the way it generally works, due to the distance involved but also as a general rule here in Oz, is that GP does all the ground work (bloods, imaging etc) and cc's the GI into the requests so that he also gets a copy of the results. We then only go to Port Macquarie on a needs be basis. I also have the GI's mobile number and can call him anytime I have concerns.

Dusty. :heart:
 
Very interesting preparation of magnesium! I like it. If you were going to suggest it to him, how many times would you suggest he take it per day and how often apart if more than once?
 
Now, that is what I was going to ask you David! Great minds and all that...:lol:

On reflection I think I will start out slowly for two reasons. Firstly, Matt is sitting solidly in the middle of the NRR we were given and not too far below your recommendation of 90 David. Secondly, given the first reason I believe it would be better to start with one tablet daily and then test every 8 weeks and adjust accordingly rather than start out too hard and risk the side effects.

Your thoughts?
 
Would the conservative route be the way to go? I really don't know. This paper which I referenced regarding the adjusted reference range suggests 600mg per day. But I also understand your desire to be conservative. If he did split dosing of meds, I was going to suggest taking one of those each time for 200mg more per day as that would still be very conservative.
 
Food for thought David. I shall ponder things I think. :)

The specialist appointments have been made and since neither is urgent I have been able to fit them in with his mid semester break and his end of semester break.

The surgical consult is the 23/4 and the GI 26/6. His current GI is winding down his workload so he can concentrate on a political career. There will be a new GI coming into the practice so I have chosen for Matt to see him. They have put Matt down as a new patient so that he will have an extra long appointment, should be interesting blooding a new doc...:biggrin:

Dusty. xxx
 
David said:
Would the conservative route be the way to go? I really don't know. This paper which I referenced regarding the adjusted reference range suggests 600mg per day. But I also understand your desire to be conservative. If he did split dosing of meds, I was going to suggest taking one of those each time for 200mg more per day as that would still be very conservative.
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My GI tests for a bunch of different minerals and vitamins. He has me on 400mg of magnesium a day but I'm going to take that article in to him. Thank you for it!
 
Matt has been complaining of some lower back pain of late and also the odd upset stomach. He said it is a little like his first presenting symptoms but he doesn't think it is Crohn's. Trying hard not to engage my brain into overdrive here! :lol:

The pain seems to have coincided with the start of uni so I don't know if it is due to sitting for long periods or whether it is making an already existent problem more noticeable. (((shrug))) Anyway he asked that bloods be done and that happened last Thursday. I don't have all the results back but the ones that should show an issue have been returned and his inflammatory markers are normal (made a blunder with the values Dex and T) as are his haematology and serum chemistry. Last time his CRP was a snig above normal at 6.2 (NRR <6) and this time it was 5.6. Could that be the magnesium effect David?? Even though it is only a small dose and not long commenced. I don't have his Vit D result or other Vitamin results yet.

Although well within normal range his ESR is slowing creeping up 3...6...9 with a NRR <30. I saw the GP at work and had a talk with him about EIM's that run independently of intestinal activity and more specifically those that affect the spine so he will see Matt about it. Now did I say something about my brain and overdrive??? :lol:

Other than that all is going well. :)

Dusty. :heart:
 
DustyKat said:
Last time his CRP was a snig above normal at 6.2 (NRR <6) and this time it was 5.6. Could that be the magnesium effect David?? Even though it is only a small dose and not long commenced.
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Yep.

Just to check, these new symptoms didn't commence at the same time or shortly after he began the magnesium, did they?

I sure would love to see him get a fecal calprotectin done.
 
:)

I have thought about that David and I having a feeling the back issues have been around for a while and uni has exacerbated them.
The stomach issues are newer though and I am not sure if they coincide with the commencement of magnesium or not. I did look to see if that was listed as a side effect and there is no obvious mention of it that I could find. The other thing that I thought may be a contributing factor is he is not eating breakfast on weekdays but rather opting to eat around mid morning. As a result he is taking his meds on an empty stomach before he leaves home, so starting a few days ago he is now taking them at tea time. Being the weekend it is hard to gauge the effect as things are out of the weekday routine but his appetite appears to have improved to me.

I shall discuss the FC with him and hopefully he will raise it with the GP.

Thanks! :heart:
 
Did Matt do summer classes? I can't imagine Matt getting too worked up over resuming classwork, unless he's just overly excited to get back at it.
 
No Dex, nothing over Summer as there was nothing suitable.

I don't think his stomach issues are related to uni. He does have a large workload, as mentioned in the My Life post...5 units, tutoring and marking 60-80 assignments a week...but he says he is fine with it all, we shall see.
I think his back issues may be exacerbated by uni though due to the long periods of sitting and his work isn't helping with the situation either. (((sigh)))

Pressing on Dusty. :)
 
Big hug and prayers its just a blip on the radar screen that has nothing to do with Crohns!!!! I agree with David that an FC is an excellent idea. It's been a great early warning system for us.

J.
 
Hey Dusty :) I do hope that Matt's symptoms are nothing to get too worried about. I do know how us moms worry about everything though! Matt and sarah are so lucky to have you on their side!
 
Calling David and anyone else that would like to chime in. :biggrin:

Collected the rest of the results today:

B12 - 237...again. (((sigh))) I have spoken with Matt about this but I imagine he is not pushing it with GP...actually I doubt he has mentioned it. Me: blah, blah, B12, blah, blah, blah. Matt: It's normal. Ugh!

Zinc - 14.2. :)

Vit D - *103. Now the thing is this result is lower than the January one which was 106. Is this just a one off glitch or something else at play? I was expecting that it would continue to climb as it has since supplementing and more so in view of the fact that we are now supplementing with Magnesium.

Dusty. xxx
 
Sarah had a similar b12 level, gp said supplement wouldn't hurt, so We did. B12 is now in 400s and hemoglobin is the highest it's been in years.

I asked GI whether we should continued b12 supplements and she said yes.

I'm not sure what I am trying to say here but GI is now telling us to keep supplementing when b12 which are now much high than Matt.
 
Dusty, have you printed out any of the papers that showcase that B12 is NOT normal? If you printed out 2,3,4,5 papers showcasing that it is not and put it in front of him, maybe that would help?

Matt is on 2000iu of vitamin D, right?
 
Sorry to hear your poor brain is back in overdrive! Don't think our kids ever fully realise just how much time we actually spend worrying about them :smile:. Hope the tummy and back issues ease up!
 
@ Catherine - I know exactly what you saying hun and that is where I would like Matt to be at. Thanks. :)

@ David - I did print out a couple of things a long time ago but nothing recently, I will revisit that. I will also show him his results in the three months post op (580) and then the steady fall off and plateauing at 237/238.
Yes, he is taking 2000iu of Vit D daily.

I think one of the most challenging things I have found with this disease is dealing with it when they are teenagers/young adults. Mind you I have not dealt with it when they were of a younger age so I may well be speaking out of turn there! :lol:

They are at an age when keeping the lines of communication open is paramount and so you find yourself walking on egg shells much of the time in attempt to keep an even keel. They are beyond the age of saying...because I said so...as that will more often than not result in shutdown. Then add to that the need to hand over their care at some point and this is now where I am at with Matt, that does not mean I will not step in if needed and if push comes to shove then I will speak with the GP.

As you would know Sarah has been managing her disease for some time now and is doing very well with it but I need to recognise that Matt is a whole different kettle of fish and my approach will need to change. I do believe that much of the problem with Matt lay in the 6 months from diagnosis to surgery, his repeated setback after setback and the associated hospital stays, procedures, bloods, drain and on it goes...his mindset since that time has been if it ain't broke don't fix it, he sees his blood result and it is in the normal reference range. I can see where he is coming from with this but it is now my responsibility to steer him away from that way of thinking and instead recognise that it will be far more beneficial for him to take a proactive and preventative approach to his disease rather than the wait and see approach and then forever be playing catch up.

Dusty. xxx
 
I personally think 4000iu or even 5000iu of vitamin D per day would be worth trying.

This paragraph in the vitamin B12 entry of the wiki has the references you can print out:

Vitamin B12 deficiency leads to a serum build-up of methylmalonic acid and homocysteine. Because of this, Homocysteine and Methylmalonic acid levels are considered more reliable indicators of B12 deficiency than the concentration of B12 in blood. Upwards of 50% of patients with vitamin B12 levels between 200–400pg/ml (147.6-295.2pmol/L) will have a vitamin B12 deficiency on the basis of elevated levels of homocysteine and methylmalonic acid.[7] Other studies and papers suggest the same with slight variances on the levels.[11], [12], [13], [14], [15], [16]
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DustyKat said:
but it is now my responsibility to steer him away from that way of thinking and instead recognise that it will be far more beneficial for him to take a proactive and preventative approach to his disease rather than the wait and see approach and then forever be playing catch up.

Dusty. xxx
Click to expand...

HA! Unfortunately many are trying to teach their docs the same thing. :ymad:
 
David, w/o me doing any research which just gives me a headache anyway…Is it more common for methylmalonic and homocystein acids to be elevated in crohns patients?…and if so, is there a better B12 value range suggested for them?
 
Homocysteine is a better determinant of folate whereas methylmalonic acid is the big one for vitamin B12. As methylmalonic acid levels are a much better determinant of B12 deficiency than serum B12, and considering how often people with Crohn's are deficient in B12, I would say yes, people with ileal Crohn's commonly have elevated methylmalonic acid levels. The problem is, getting a doctor to run methylmalonic acid AND having the insurance company also go along with it is pretty damn tough. As such, considering methylmalonic acid levels are often elevated at B12 levels of 400pg/ml and below, I suggest everyone get their level above 400 and even better, 500 to be safe.
 
When you did your B12 survey, I posted that EJ's went from red-flagged as too high in Sept. last year at 1037pg/ml to 863 high normal in Dec.. Can you foresee any problem with a level too high? It has never been discussed by the GI.
 
I admittedly don't know all that much about high B12 levels, sorry. :( I only focused my research on low levels since that's what people here tend to see.
 
Dexky said:
When you did your B12 survey, I posted that EJ's went from red-flagged as too high in Sept. last year at 1037pg/ml to 863 high normal in Dec.. Can you foresee any problem with a level too high? It has never been discussed by the GI.
Click to expand...

I had the same question early this year. Grace to our SHOCK was high over 900 for her b12 and was NOT supplementing.
Here's a link explaining some causes. It might fit with his PSC.:yrolleyes:
Plus one of the causes have to do with Eosinophils. That fits Grace.:yfaint:
http://www.livestrong.com/article/300753-what-are-the-causes-of-high-blood-levels-of-vitamin-b12/
 
Thanks FW! PSC isn't mentioned but I looked into the protein carrier theory. Tacrobalamines I and II blah, blah, blah….I know how Matt feels. It's normal at 863!!:)
 
Soooooooo...

Strike me down! After all my talk of encouraging Matt's independence I spoke with the GP yesterday about his B12. :eek2:

After a bit of toing and froing I made my point, :lol:, and he is happy to start supplementing him via injections. He will also discuss it with Matt and explain the reasons why.

Happy Dusty. :)
 
What b12 can be too high ?????
DS's last two levels were 1148 in feb and 1251 in march
He does not supplement more than what is in his peptamen jr.
No one said anything about it
 
Not sure what I think about that, David. I think many (most?) people's vit B12 tend to be higher than the "normal limits" of their labs. The article is not specific about what a "high" cobalamin, but it does make me wonder...
 
Hey Dusty , sorry to highjack here, but I thought this might be the perfect place to ask since you talk so much of vitamin levels in re of Matt :)

I got JJ's blood results the other day and I have been trying to figure out what the deal is. His Endocrinologist said that his Vitamin D level is quite low. He's at 19 with normal range being 30-300.
He recommended that we supplement with 1500-2000 mg (?) per day ??
I know you and David seem to be quite well versed in this area...Is there a specific Vit D you would recommend that I get for him ? He has just turned 15 (not sure if that matters)

Also, what the heck would cause this ?? We live in Florida ! He is constantly outside with his friends ... :yfaint:
 
Last edited:
Vit d can be low for many reasons including crohn's or other autoimmune disorders.
It can also be low if you have general inflammation going on in the body such as asthma or allergies .
 
Thanks MLP
Not sure on Crohn's, however, he does have asthma, allergies, and psoriasis ! Maybe that's it ? His allergies have been awful the last month +. Although, no issues with asthma or psoriasis lately...
Interestingly, his endo doc did mention the possibility of malabsorption.
 
We were told by DS Gi prior to dx
If a kid has inflammation going on from whatever the source ( including asthma )
The body has to work harder ( needs more calories) since it is so busy fighting the inflammation ( and using the vit d levels up btw )
Hope you get to the bottom of it soon.
 
Hey T...:hug:

I am assuming that JJ has fair amount of skin exposed when he is outside and he isn't using sun screen?
If that is the case then I too would be thinking along of mlp, perhaps his allergies are playing a part. But in view of the fact of where you live and JJ is an outside kid I would have thought that is a significant deficiency to have so would also be looking to a malabsorption problem and why.

I am not as up on Vit D as David. :) Ensure the type you supplement is D3. I looked into it and found that tablets were not the most readily absorbed but rather gel caps were the way to go. We have not tried injections or sub lingual drops. These are the type of caps we use...

k0795916.jpg


...the brand is Ostelin but I imagine that is an Australian product.

I don't know that 1500-2000iu would be sufficient straight up, David would be better able to advise on what would be a preferred dose and perhaps a brand to go for. The gel caps we use are 1000iu.

Dusty. xxx
 

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