Down Syndrome: Blood Tests We Do Each Year and Why

I posted earlier about Jessie’s alopecia (hair loss). Evidently, since the last time we saw her pediatrician,  Jessie has more hair loss.   Or, it was just more noticeable to him than before since she has a large bald patch right in the front. Her doctor seemed surprised, and before I could bring it up he did.  He said he wondered if the hair loss was an indicator that her thyroid dosage needed to change and he also wanted to check her for other auto immune issues.

First of all, before I share anything else, I want to say I’m no expert.  I’m just sharing what I’ve learned as a mom who tries to educate herself on issues that affect my child’s health.  I’m not even what anyone could call a “health nut”.

I’ve had friends tell me they haven’t thought about testing vitamin levels, which is why I’m sharing.  This list isn’t meant to be a list of all that you should check, this is just what we are currently doing. So much of what I’ve learned on this journey is from other parents, so I try to pass on what I’ve learned if it might help someone else.

Although there is a lot known about Down syndrome, there’s still so much that isn’t well understood.  I find this new research showing differences in the immune system of a person with Down syndrome really interesting.  While I don’t understand all the ins and outs, it’s clear that the immune system is a key player in many of the health issues common to people with Down syndrome.  It has been known there is something different about their immune system, just not exactly what.  This research has led to clinical trials that hopefully will lead to solutions for some of these health issues that affect many people with DS.

Considerations for When you get Results for Vitamin Levels Testing

  1. I have learned that often doctors or their nurses will say a vitamin level is “normal” when it falls within normal ranges, but might not be optimal. If you ask the question if its okay to be at the low end of a large normal range(for example 30 for a range of 30-100) you might learn that it’s better, or optimal, to be in the middle of the range, but if you don’t ask that question you might just get the answer of your results are normal.  Even if they are barely below normal, I’ve been told they’re normal.
  2. I always ask for the number (not just that it’s normal) and ask for what the normal range is and I write it down.  For most vitamins, you really do want to be more middle of the range.
  3. I’ve had the experience of a nurse telling me I could give Jessie a multivitamin when her B-12 was just barely below normal.  (This was when we were between pediatricians and a nurse I didn’t know.)  Our previous doctor had Jessie taking a B-12 supplement.  I felt confused when she told me this and while on the phone we compared the previously doctor recommended B-12 supplement  to the multivitamins I had on hand.  The amount in the multivitamin was nowhere near what the doctor had previously recommended (at that time had been 25 or 50 mcg).  She then said, well, you can just keep giving her what he told you before.  The amount in the multivitamin wouldn’t have been enough to correct a deficiency.
  4.  See #3…..ASK QUESTIONS!  And if you’re not sure about the answer, ask some more.  If they don’t like questions, find another doctor who doesn’t mind them.

The Tests and This Year’s Results….

CBC

Every year Jessie has a CBC done because of the elevated risk for leukemia in people with Down syndrome.  Hers is normal this year as it has been every year.

Thyroid

In addition to Down syndrome being a risk factor for thyroid issues,  there is a strong family history on my husband’s side.  Jessie has been on thyroid meds for hypothyroidism since she was 5 or 6, I think?  It’s hard to keep up with it all, she was pretty young and seemed tired all the time.  Now, I know we should have also had a sleep study when we were looking for why, but that wasn’t commonly known then.  Because of the family history and symptoms that might be related, her pediatrician at the time said he felt comfortable treating her when some doctors might have chosen to watch it and see what happens.

My husband had been on the same medicine for hypothyroid for many years, so I was familiar with both the condition and the medicine, and I felt comfortable with that.  As years have passed, she still has a low energy level and symptoms that could be related to her thyroid,  so I have been glad to not have that question, to not always be wondering if things might different if we were treating her for it.  Her energy is definitely better now that she is on CPAP, but she still has a low energy level.

Every year we have her blood work done to check her thyroid levels.  I’ve read that it’s common to have dosage changes during puberty, but Jessie’s dosage has never changed since she started on medicine.

When we got her results this year,  her free T4 was nicely in the middle of the range.  The TSH was slightly toward the higher range of normal, but well within the normal range, so no medicine changes at this time.

This means thyroid issues are eliminated as a cause of the hair loss.  The blood tests related to immune system came back as normal too.  We don’t do those every year.  We have had them once before but it’s been several years.

We Check Some Vitamin Levels and Here’s Why

For several years now, we’ve also been checking some vitamin levels when they draw her blood for the thyroid testing.

There’s a lot on the internet about different supplements specifically formulated for Down syndrome.  They’re expensive.  If they were affordable for us, I would try them to see if they made a difference for us.  But they aren’t affordable for us, so I’ve tried to educate myself on what vitamin levels people with Down syndrome have a tendency to be deficient in.

I’ve asked friends who are more knowledgeable what they have tested, what their experiences have been and I’ve done a little reading.  I haven’t done nearly the research or reading on this that some have.  Again, I don’t claim to be any expert. If you know other things we should check that aren’t listed here, please share in the comments!

If you haven’t ever checked these, I would say it’s a good idea to check them at least once to rule it out.  That’s exactly how it became something that we routinely check now.

B-12

I don’t know how common it is for B-12 to be deficient in people with Down syndrome in general, but Jessie’s B-12 has tended to be low, or only just barely within the large normal range unless we supplement.  Her numbers do always come up when we supplement.

Jessie was only 6 or 7 when I noticed she had several gray hairs.  I asked about checking her B-12 because I read that sometimes gray hair in children was associated with low B-12.  Although he thought it highly unlikely Jessie’s B-12 was low, because she loves meat and eats it every single day,  he had no problem checking it for me.  He was pretty surprised when her B-12 results came back at just below normal.  The normal range is HUGE for B-12 so hovering around the bottom isn’t great.  Since that time Jessie has taken B-12 in varying dosages and we usually check it once a year.

This time her B-12 was the highest it has ever been, 1100, which is actually elevated.  She’s never been in the upper range before! The normal range is 193-986.   Her doctor said it wouldn’t hurt her though, that her level is fine.

At 16, she’s an adult weight and I give her adult vitamin dosages.  I buy the Member’s Mark brand at Sam’s (sublingual, melts on or under the tongue) and although I’ve read much about sometimes store brands vitamins aren’t good quality or well absorbed, the B-12  in this brand is clearly working for us!

Vitamin D

Her vitamin D level was 29, which is one point below the beginning of the normal range.  For vitamin D, 30-100 is seems to be the most widely accepted normal range.  This is the range used by both my doctor and Jessie’s pediatrician.  My doctor said he prefers to see a number in the middle of the normal range.

Although I try to stay on top of things, I feel like I constantly find something I’ve missed.  I haven’t understood the connection with Vitamin D to the immune system.  These links from National Institutes of Health ( a complicated read with medical terminology)and Harvard ( this one is easier to read) show just how important Vitamin D is to the immune system.  These articles make it clear that low Vitamin doesn’t just make you feel fatigued, that Vitamin D is really important to a healthy immune system.

In addition to the possibility of Down syndrome affecting her absorption of Vitamin D there are other factors that make Jessie more likely to have a D deficiency.  She doesn’t eat the foods that are good sources of vitamin D, she doesn’t like to spend time outside, and she’s significantly overweight.

You CAN get too much vitamin d and that can be a problem, so you shouldn’t supplement vitamin without having yours tested.  Mine has been low also, so I’m giving Jessie the dosage that my doctor recommends, 10,000 units per day (with a meal that has some fat in it)  until we’re in the normal range. In the couple of weeks leading up to Jessie’s blood test I had already started being more consistent, so I have to wonder if her level previously was even lower, which makes me feel terrible.

My doctor retested me after 6 months.  It takes a while for the vitamin D to come up once you start supplementing.  He said I was in no danger of getting too much in that time frame before we retested.  Once I got back to the normal range my doctor bumped me down to 5,000 units per day. I will do the same for Jessie although this is more than what I’ve read as a daily recommendation.

Zinc

We haven’t always tested for Zinc and did last year for the first time. Zinc is another one that’s important to the immune system.  I didn’t realize it wasn’t on the the list for this year and it wasn’t retested. If you haven’t before though, this is a good one to check.

If you have information or experience to share I would love to hear from you!

This was a long post, it’s colder than usual here, and I seriously need a cup of coffee.  A friend gave me some Dunkin’ Donuts white chocolate peppermint coffee and it’s calling my name.  Hope you’re having a great week!

Josette

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