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Neuro Bloodwork is in!!


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My GP called today to say that my dd's bloodwork results came to her office and she is low in Iron and B12!!!  That explains so much of the fatigue.  Then I see the post about ADHD and B12 and I am seriously wondering how much impact this B12 deficiency is having on her??

 

I won't know until tomorrow how low her levels are but she asked for us to come in tomorrow to get it sorted.

 

My main concern is giving Iron to a child who has chronic constipation.  But it is what it is I guess...

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That's so awesome! :) happy for you. I know that's a hold your breath time while waiting.

 

Yay!! :)

 

There a stool softener my daughter took when she was in a car accident and meds made her constipated. They didn't give her cramping or anything and worked right away.

Maybe ask about a gentle still softnre? Constipation is no fun.

Edited by Kat w
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Colace is a good softener. I don't know if they give it to kids. but I would assume so. It comes in all kinds of generics and is not at all hard to fine. I think it's docusate sodium. 

 

Make lots of molasses cookies, lol! They have iron, but molasses makes you go.

 

Magnesium also makes you go. 

 

Glad there is something actionable and reasonable that came up with the testing.

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For constipation I also give daily magnesium citrate (capsules, but it also comes in powder).  Colace (or even senna tea) is good for when the constipation is acute.  I do not give miralax after repeated negative experiences - it really did impact ds in the head.

 

It'll be interesting to see what the neurologist, presumably a mainstream doc, says about the b12 - I'd really like to know so please update afterward :).  (IMO it's a can of worms, the methylation cycle... my kids, and myself, seem to do worse with the methylated version, methylcobalamin, than one would expect... at least two of them have relevant genetic polymorphisms.  I prefer hydroxycobalamin to either the methylcobalamin or cyanocobalamin.  But don't pay attention to anything I say on this because we have not found much in the way of helpful protocols beyond the occasional fraction of a capsule of Thorne b-complex even though I have nearly everything here in my kitchen cabinet.)

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When I was deficient before, the B12 helped very quickly, maybe within a couple of weeks. It was like my brain settled and my thoughts weren't going constantly.

 

The other thing to know is that supposedly the US cut off for normal is in the 200s, but in other countries that is considered too low. I think normal levels start in the 400s in Japan.

 

There are some types of anemia that are caused by a B12 deficiency. So it might turn out that if you get the B12 levels up, she might not need iron for long. I think both being low could be significant.

 

Unless a child is vegetarian, B12 deficiency is unusual. It's more common in people over 50. I had my deficiency first identified around 40, but I have a history of GI problems. So if you have a child with a B12 deficiency who is eating animal products, it might be worth investigating why.

 

I don't know if celiac is something you ever thought about.

Edited by Tiramisu
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You should actually consider *why* she's constipated.  If she's eating white flour, cheese, or red meat, those need to be axed.  They clog the gut, and people who are low tone are just really susceptible.  Then you can learn how to massage her gut and open her ileocecal valve.  Taking magnesium to excess, while it works, is also rushing things through, affecting absorption and digestion.  Ultimately you need to correct the problem.  Higher fiber intake (organic fiber cereal, beans, fruit, especially fruit high in pectin) and more fruit for digestion.  

 

You can eat the molasses straight, without the cookies.  You just do like a teaspoon a day.  And raisins, maybe 1-2 tablespoons, not binging.  Cookies are white flour, so that's why I'm saying ax them and just eat the molasses.  The nutritionist I used for years was puritan like that.  She'd have us do molasses straight, raisins straight, never in cookies, hehe.

 

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In addition to magnesium, gelatin is really good for constipation. You can get a specific kind called collagen hydrolysate (spelling?) that dissolves in cold liquids. You can put it in smoothies (that's what I do), pudding, applesauce, whatever. I think it gently moves things along :)

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Thanks everyone!  I have spent some time tonight researching vit B12 deficiency in kids and I AM SHOCKED!  It is my dd's issues to a T!!

 

Here is just one site:

Red flags of B12 deficiency in infants, children and teenagers

If your child exhibits any of the following signs or symptoms, insist that your doctor tests for B12 deficiency.  I colored the ones we are seeing at home.

  • Movement problems, including difficulty in walking or writing
  • Mental changes - irritability, altered mood, poor memory, "flat" emotional tone, autistic-like withdrawal
  • Vision problems/abnormalities
  • Slowed weight and height gain
  • Leg pains or other abnormal sensations
  • Fatigue
  • Loss of appetite
  • An abnormally small head circumference in infants or toddlers
  • Apathy, lethargy, or irritability
  • Involuntary movements, such as arm waving in infants or toddlers
  • Tics
  • Grey hairs / premature greying (a few weeks ago I saw a few grey hairs!)
  • Areas of hypo pigmented skin in a Caucasian child and/or vitiligo, or areas of hyper pigmented skin in a black or Asian child
  • A rooting reflex after eight months of age (this reflex is usually absent after six months of age
  • A history of any surgery (including dental surgeries) involving nitrous oxide. This anaesthetic agent is often administered during dental work or surgeries such as insertion of ear tubes in children with chronic ear infections, can inactivate the body's stores of B12 and cause severe neurological damage
  • Failure to thrive (poor appetite, poor growth and/or weight gain, general poor health)
  • Chronic constipation
  • A diagnosis of developmental delay, autism, cerebral palsy, Intellectual disability, or other neurological disorder
  • Severe food allergies or sensitivities
  • A diagnosis of coeliac disease or gluten enteropathy
  • A thyroid disorder or other autoimmune disorder
  • A history of stroke or a diagnosis of arteriosclerosis
  • A diagnosis of any psychiatric or behavioural disorder including ADHD
  • A diagnosis of Downs Syndrome

I am seriously overwhelmed with hope that this could be the root of many of our problems!!

 

Then this:

The effects of B12 deficiency on kids are especially alarming. Studies have shown that kids raised until age 6 on a vegan diet are still B12 deficient even years after they start eating at least some animal products. In one study, the researchers found:

Ă¢â‚¬Â¦a significant association between cobalamin [b12] status and performance on tests measuring fluid intelligence, spatial ability and short-term memoryĂ¢â‚¬ with formerly vegan kids scoring lower than omnivorous kids in each case.

The deficit in fluid intelligence is particularly troubling, the researchers said, because:

Ă¢â‚¬Â¦it involves reasoning, the capacity to solve complex problems, abstract thinking ability and the ability to learn. Any defect in this area may have far-reaching consequences for individual functioning.

I just had no idea!  And I swear I would never have started down this path if it wasn't for THIS BOARD!!!

Edited by mermaid'smom
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Just as a total rabbit trail, I'm reading, as in actually reading (each page), of a book Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure  It goes into the history (yes, gag) of the autism cause/cure movement and all the things they've gone through.  It's actually rather fascinating.  You sort of scream a bit, see some holes, and keep reading.  I'm about half way through the book.  I may get bored, and I actually haven't figured out where he's GOING with this and why we care.

 

Anyways, he mentions the b12 craze, so it gave me a chuckle to see it on the list.  Part of the package, maybe not a cure, maybe not as much a part of the package as some would claim.  After you read this book, you sort of believe NOTHING, lol.  

 

But anyways, I'm glad you found out about her b12 deficiency!  If it's showing up on bloodwork and it's there, you definitely want to work on it!  And you know my theory on this?  Whatever improves after you improve the deficiency is what was being caused by the deficiency, lol.  You know like sometimes you just won't know till you try.  But it's good to have a START!  It won't improve EVERYTHING, but it will surely improve SOMETHING.

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 It's actually rather fascinating.  You sort of scream a bit, see some holes, and keep reading. 

 

This is totally where I am in general (and have been for quite some time now).  There are so many puzzle pieces, there is so much extreme complexity.  Different parts of the elephant and so on.  While a single treatment/therapy may be useful, it's almost never the whole story.

 

I have been reading about the autism = B12 connection...my brain hurts from it all.  

 

I hope you are lucky and find it helpful!  I'd be interested to hear what sort of dose is the recommendation, tiny or very large, etc.

Edited by wapiti
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I'm glad to hear that this B12 deficiency has been recognized.

Where recovery usually involves weekly injections for 6 to 8 weeks.

 

B12 plays a critical role in 'nerve signal conduction of the muscles'. So that a deficiency will effect conduction in legs and arms, 'peripheral neuropathy', and then progress to the body.  

But crucially, it can cause unreversible nerve damage, if left too long.

 

Though it also causes 'enlarged red blood cells, that don't function properly'.

Resulting in a type of 'anemia'. Which will also effect oxygen supply.

 

In relation to the issue of 'constipation'?

While we have a 20 foot long intestine.   Food doesn't simply pass through this by gravity?

Rather the intestine is 20 feet of muscles.  

Which contract in waves along the 20 feet.  Which move the digested food along the intestine.

But a B12 deficiency, could also reduce this muscle action of the intestines?   

So that the digested food isn't being efficiently moved along, resulting in constipation.

 

Though one notable thing about B12 and its sources?

Is that it is formed from the element 'Cobalt'.

So while eating red meat is seen as a good source?

This is only true, if the cattle are grown on soils with plenty of cobalt.

 

Another issue with B12, is that it involves one of the most complex enzymatic processes, to be absorbed in the digestive system.

So that simply swallowing a B12 tablet wont be absorbed?

With B12, what is needed is what are called: 'sub-lingual tablets'.

These are placed under the tongue, and allowed to dissolve.

As they dissolve, they mix with the saliva.

Where saliva contains a whole range of enzymes, that convert elements in food, into forms that our digestive system can absorb.

 

Though with a B12 deficiency, their is usually a very notable response to the injections.

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Geodob, so I can be clear, are you saying that a B12 deficiency directly causes issues with neurotransmitters in muscles?  This sounds completely separate and apart - perhaps downstream? - from methylation issues (e.g. where there is difficulty converting B12 or other things within the methyl cycle under controversial theories about genetic polymorphisms)?

 

The big picture has been very challenging to put together but that doesn't stop me from trying LOL.  Something new to go read about...there's always more to the puzzle and this would be an interesting piece.

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Geodob - Thank you for all that info! 

 

Here is the breakdown...

Her B12 is at 217 which she considers low but not severely low.  But she acknowledged that internationally our "low" is significantly lower than other countries.  Like Tiramisu said other countries want to see numbers in the 500s.  She also said that each person is different and that 217 might be a fab # for one person but the person beside them might need #600 to get the same results.  She said she has some patients whose numbers are in the 800s so for my dd 217 could be considered SEVERELY low.

 

More concerning to her was the Iron levels.  She said that ideally she would like to see her level be a 40 and it is currently 9.  Worth noting that she has not even started her period yet and when she does that number will drop lower so that is an ASAP situation!

 

She recommends the B12 shot for a variety of reasons - that set my dd off but I know how to work with her to get her on board so that it just a conversation away from being a reality.  I am curious to see what the Neurologist has to say about all this!  This was just a visit with our family Dr who happened to get the results first because her office is in the same building as the lab.

 

Very happy with how this is all unfolding!

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It'll be interesting to see what the neurologist, presumably a mainstream doc, says about the b12 - I'd really like to know so please update afterward :).  (IMO it's a can of worms, the methylation cycle... my kids, and myself, seem to do worse with the methylated version, methylcobalamin, than one would expect... at least two of them have relevant genetic polymorphisms.  I prefer hydroxycobalamin to either the methylcobalamin or cyanocobalamin.  But don't pay attention to anything I say on this because we have not found much in the way of helpful protocols beyond the occasional fraction of a capsule of Thorne b-complex even though I have nearly everything here in my kitchen cabinet.)

 

There's supposed to be some test that indicates whether someone will respond better to mB12 vs. hydroxy B12. I asked our integrative neurodevelopmental pediatrician about it one time. He felt that since it wouldn't be covered by our insurance, it made more sense to just start with the mB12 shots and then if those had negative side effects, give hydroxy B12 a try. But if the OP is not comfortable with a trial-and-error approach, there is an actual test.

 

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She recommends the B12 shot for a variety of reasons - that set my dd off but I know how to work with her to get her on board so that it just a conversation away from being a reality.

 

Numbing cream and then do the shot after the child is asleep.

 

We're no longer doing mB12 shots since they weren't helping enough to justify the full out-of-pocket cost after we switched insurance. Especially after the FDA made the compounding pharmacy (Hopewell in NJ) switch from sending a 90 day supply to a 30 day supply. It has to be FedEx'd overnight so tripling the shipping charge was $$$$.

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Just as a total rabbit trail, I'm reading, as in actually reading (each page), of a book Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure  It goes into the history (yes, gag) of the autism cause/cure movement and all the things they've gone through.  It's actually rather fascinating.  You sort of scream a bit, see some holes, and keep reading.  I'm about half way through the book.  I may get bored, and I actually haven't figured out where he's GOING with this and why we care.

 

Don't get me started on Paul Offit. He has literally made tens of millions of dollars off a vaccine that he sat on the FDA's advisory panel to get added to the schedule. :cursing: He is the POSTER CHILD for financial conflicts of interest in medicine and researchers sitting in the pocket of Big Pharma.

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There's supposed to be some test that indicates whether someone will respond better to mB12 vs. hydroxy B12. I asked our integrative neurodevelopmental pediatrician about it one time. He felt that since it wouldn't be covered by our insurance, it made more sense to just start with the mB12 shots and then if those had negative side effects, give hydroxy B12 a try. But if the OP is not comfortable with a trial-and-error approach, there is an actual test.

 

Thanks CW - I wonder what that test would be, if it's something beyond the genetics which we have from 23andme (whole bunch of interrelated polymorphisms mthfr, mtr, mtrr, VDR taq, comt, etc). According to a (controversial) yasko theory, ds should need and be able to tolerate more methyl though perhaps there's a delicate balance. In the past, hydroxy had no discernable effect, but I wonder about dose. I can't check now but IIRC his b12 was not great but not abysmally low, maybe in the 3 or 400s. LOL I am always working on a new angle, this time while we wait to see if the big gun IVIg will help (has an immune issue)... I can never sit still.
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I am not anti-vaccine and my kids by this point have received all vaccines for diseases that are both serious and spread via casual contact. My little one has actually gotten some non-routine vaccines since her cochlear implant places her into a higher-risk category.

 

But I would like to see Paul Offit forced to never speak in public about vaccines without first disclosing his financial conflict of interest in pushing them.

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Was folate (B9, folic acid) checked as well?  My Vit B was all low and I have anemia. Pins and needles as well as fatigue and cold fingers and toes was what led to full blood tests. I had one almost every year from elementary to high school, my dad's insurance covered. Then I had full blood count twice in college.  Vit B affected ability to handle stress and I am an insomniac so the doctors were testing any deficiency that could bump up anxiety.

 

about b12 and folate testing

https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=vitamin_b12_folate

 

ETA:

my mom has similar issues.  Folic acid numbers were horrid during first blood test in pregnancy. The deficiencies were causing pseudo panic attacks from extreme exhaustion.

 

 

Edited by Arcadia
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Was folate (B9, folic acid) checked as well?  My Vit B was all low and I have anemia. Pins and needles as well as fatigue and cold fingers and toes was what led to full blood tests. I had one almost every year from elementary to high school, my dad's insurance covered. Then I had full blood count twice in college.  Vit B affected ability to handle stress and I am an insomniac so the doctors were testing any deficiency that could bump up anxiety.

 

about b12 and folate testing

https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=167&ContentID=vitamin_b12_folate

 

Yes if I remember correctly Folic acid was checked??  I no longer have the requisition form but I think so.

 

Oh and I got her on board - we are going for our first shot tomorrow if everything falls into place!

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In case you did not get a copy of her bloodwork results, ask for one.  I had to ask for mine from the obgyn here and I had to ask for my kid's results from their pediatrician. Where I was from, we would get a copy when the doctor goes through the results .

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You can ask about B9.  It may not be necessary for your daughter's case.  I had shiver fits and the doctors just ran all the blood test they could think of to eliminate. Even when my haemoglobin count was high, my fingernails were pale and my fingers were cold for example.

Edited by Arcadia
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I have a copy.  Just took a look and don't see B9 or folic acid?

 

Whenever I or my kids have had B12 checked, it's always been a double test that includes B12 and folate. That's at Labcorp, our insurance-designated lab.

 

My folate was high in the past and that can mask low B12 levels, so maybe my problem has been building. I can't remember when I stopped taking B12 regularly but for months I haven't felt mentally sharp.

 

About the different types of B12, my levels came up to normal even with the cyan- type and I could really feel the difference. I used the methyl- type after that, but I couldn't tell a difference because by then I was in the normal range anyway. I just ordered methyl to be on the safe side, and I will use the bottle of regular stuff I have until it arrives.

 

Now my dd who eats very little meat has had B12 levels in the too high range which could indicate it's building up because it's not being processed properly, so I wondered about her methylation.

 

I got a gene test for ancestry as a bday gift and haven't used it yet. I think with that you can somehow get the raw data for DNA analysis.

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Yes if I remember correctly Folic acid was checked??  I no longer have the requisition form but I think so.

 

Oh and I got her on board - we are going for our first shot tomorrow if everything falls into place!

 

Folic acid could be ok while the bioactive form might not be. My DD takes 5-MTHP as part of her Behavior Balance DMG supplement from FoodScience of VT. It also has P5P, which is the bioactive form of one of the other B-vites (B6? I can't remember)

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Hmm. Well, I want to point this out as delicately as possible.

First, I don't know of Paul Offit.

 

I have straddled the line in years passed about vaccines. My kids have all their though.

 

My hubby works for a big pharmaceutical company , in fact, the largest one in the world. I felt I should say that first.

 

The 342k and 433k is really, a drop in the bucket to both the givers and the receivers. It sounds like alot to us, it is minimal to them...even, the receivers.

 

I'm sure everyone knows, companies have to give away large portions of money every year for tax issues. They give it to companinies in their field and otherwise, instead of giving it by way of taxes to the govt . I did too when I owned a business.

 

These companies give larger one lump monies than the 300-400k ranges to other 'out of market' companies every year or quarter.

 

It really, just isn't that much money and very typical for businesses to support in industry businesses. Why wouldn't they? I did.

 

That said, crimson wife I respect your knowledge and opinions very much. I have said you have LOADS to bring to the table.

I appreciate your passion on this.

Paul Offit? You are probably correct on, I haven't heard of him before . every industry , family, church, workplace, has 'that guy' ir guys.

 

I just wanted to point out, the amount they are giving, is pennies to both of them, in comparison .

 

I hear you when you say you aren't anti vaccine and I'm sure your not.

For those reading that never join o comment tho, vaccines are what keep our kids from getting measles, mumps, polio, etc.

When more families stopped giving vaccines, what did we see here in the U.S.? ...measles. They were given for a reason and we have all enjoyed the fruit of vaccines irradicading these horrible deseases.

 

Third world countries thst don't have vaccines, are riddled with horrible things.

I for one, don't want any of 'em lol :)

 

I will have to research Paul Offit. You've intrigued me now crimson wife :)

Edited by Kat w
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Antio - I have read your post so feel free to delete when you want :)  And thanks for the info.  Paper work is in front of me and I am seeing THS levels of 1.8  beside that is a range of .5 - 5.3 so I am assuming that means she is on the low side of that normal range??  Any thoughts on that number? 

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Mermaid, yes that's a good TSH.  .5 is considered supressed and most people now consider 3 the cutoff.  So that 1.5-ish is really good, smack where you want to be.  You *can* have some funky things, but just in general yes that's a good TSH.  But it's a good thing to have checked!  :)

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Kat, your comments on the money are interesting. Like you, I don't really find the money thing noteworthy.  The book itself was fascinating, because frankly I had read a lot on the anti-vaccine, vaccines/environmental/toxins/candida/whatever causes ASD thing and I had NOT seen a coherent refutation of it.  And if you finally meet some people whose kids have ASD who have not ever been vaccinated, it becomes a more fascinating topic.  I meet people who think they're gonna give shots, diflucan, etc., etc. and somehow treat their way out of ASD.  I totally agree you can IMPROVE it, but that's because you crapped up their system with toxins.  I agree with that.  I eat organic, food combine, take probiotics, you name it, right there with you.  I've done chelation, etc. too.  But I meet these people and their heads are in the sand saying see, I got HBOT and look how much BETTER my kid is!!  And I'm like hello he's so clearly diagnosable.  Better is not cured.  Genes do not cure.

 

So to me, to see a coherent explanation of the reality I know, that kids who were never vaccinated CAN have autism, this was powerful.  He goes into the consequences of the various fads and traces them out, how one public policy fad led to this domino effect.  I've felt it in my own life, and I just thought his explanation was really helpful.

 

Yes the book has holes and is incomplete.  Yes, he's shamelessly promoting vaccines.  Whatever.  I think people who are choosing not to vaccinate can probably read a book and still know why they're doing what they're doing.  I liked the bantering of the ideas, challenging it. I read every single page, and people who know me know I don't do that very often anymore.   ;)

Edited by OhElizabeth
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So confused about something.  GP told me that her Iron was 9 - that she wanted to see 40.  But looking at this paperwork I see that it says IRON 15 with a range of 6-27 beside it? Which *to me* means it is normal??  The only 9 I see is something called FERRITIN  It says 9 with a (L) beside it saying low and the normal range is 12-86??

 

Is it kosher to post a pic of the results here for you all to look at?  I will omit identifying details.

 

 

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Low side of the normal range for TSH is good. 1.8 should be fine.

 

There is some disagreement about measuring thyroid function, especially what values of what hormones in what form.

 

Higher TSH is usually interpreted as the pituitary perceiving a need for more thyroid hormone and telling the thyroid gland to make more thyroid hormone because there's not enough in circulation due to a disease of the thyroid like Hashimotos.

 

Lower TSH usually means the pituitary does not sense a need to tell the thyroid to produce more thyroid hormone because levels of thyroid hormone in the body are probably okay.

 

If it's really low, it could mean you have hyper- or overactive thyroid. We hear a lot about hypothyroid but hyerthyroid isn't good either. My mom and my FIL had it.

 

This is all assuming you have a normal pituitary. I have a DD with an unusual pituitary. Not fun when you deal with endos who put a lot of stock in TSH.

Edited by Tiramisu
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Ferritin is a protein found inside cells that stores iron so your body can use it later. A ferritin test indirectly measures the amount of iron in your blood

 

So does that mean that the 9 she saw is the amount of iron currently in her body?  I wonder why then the IRON results are normal??

 

 

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On the light side of all of this...a funny thing happened when I went to get the prescription for B12 filled.  The pharmacist came to the counter to discuss the meds.  She said it would be injected in an office 1/month as per Dr directions.  She said this box contains 10 vials so almost a years worth.

 

She then rang it up and I handed her my drug card.  She said "That will be two seventy-five".  My drug card covers 80% so I was surprised.  I said "is that with my coverage"? and she looked and said "yes without the card it was sixteen....something...and kind of trailed off distracted by a coworker who approached the till.

 

So no biggie I happened to have the exact amount in cask and proceeded to count off 14 $20 bills ($280).  I handed them to her and she just...blink blinked at me confused.  Then her face lit up and she said "OH!!!  You thought I meant $275!!  No I meant $2.75!! 

 

We laughed so hard!  I said "What a savings that is!!!"  Then I went out and spent the difference of vitamins and Iron supplements!!

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Here's a description of HashimotoĂ¢â‚¬â„¢s, what it is and how it causes hypothyroidism. Hyperthyroidism would bring the range of TSH below normal.

 

http://www.endocrineweb.com/conditions/hashimotos-thyroiditis/hashimotos-thyroiditis-overview

 

TSH testing is the flag for further testing. It's also good to test free-T3 and free-T4 levels.

Edited by Guest
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Ferritin is a protein found inside cells that stores iron so your body can use it later. A ferritin test indirectly measures the amount of iron in your blood

 

So does that mean that the 9 she saw is the amount of iron currently in her body? I wonder why then the IRON results are normal??

I haven't done much research on this, but that is consistent with the test results I usually have, also. Did they test her hematocrit? Here's a link showing the connection to iron deficiency anemia. We are getting all that tested in both our boys.

 

http://www.medicinenet.com/hematocrit/page3.htm

Edited by Guest
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There's a panel to measure iron. Maybe they'll want all those tests done.

 

Here's a link. https://labtestsonline.org/understanding/analytes/serum-iron/tab/test/

 

Ferritin are iron stores. 9 is really low. The cut off for normal is 15. I know when I had to research this for a couple of different reasons, I remember reading that below 50 is when some people may start to have problems with fatigue and things like RLS if they are prone to it, according to some studies and anecdotal evidence.

 

I'm curious that you have two factors leading to anemia, low B12 and low ferritin. I'd be interested in knowing what factors can cause both of them to be low, particularly anything that could cause an absorption issue.

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