Low % Sat (iron) results - thoughts

[creekland]

I don't have a ton of computer time at the moment, so am turning to the Hive for thoughts to ponder (tomorrow morning).

 

Multi-phasic blood test results are in and the only surprise was a flagged low % SAT (16% when normal range is 20-55 and my previous result from last April was 39%).  Iron (75) and transferrin (325) are both normal though - which seems strange since the % SAT is an "iron available in the blood" test according to a quick google search.

 

What gives?  Something I should be concerned about?  

 

And to anyone who remembers and wants a follow up... TSH results (thyroid) are quite normal (1.73) in spite of my having checked most of the boxes for symptoms of that one.  I'd have lost a bit of money if I'd been gambling on that result as I was pretty much 100% certain it would be off.  So... health mysteries continue - esp with the neck pain, cold feelings, dry skin, weight gain, etc, that I thought was from thyroid issues - esp after having been more or less guaranteed that would fail sometime post radiation!

 

I swear there's a kid with a voodoo doll out there.  Someone find him/her!

 

But the % SAT being flagged for the first time - now a whole different issue of some sort?  Or not?  GRR!

 

I'll see what I can research tomorrow morning before mom gets up.  Feel free to give me any leads!  Must return to being social now.  ;)

[creekland]

Hmm, no replies.  

 

Methinks this is going to be a bit more of a search (sigh) and I suppose just end up as another oddity fitting right in with my family line of things that are not supposed to happen.   :banghead:

 

With most things in life I kinda like not fitting the "normal" mode.  Health issues are NOT one of those.  :cursing:

 

Actually, I'm seriously contemplating just waiting 3-4 months and retesting rather than putting effort in...  maybe it was a testing error.

[SparklyUnicorn]

I don't know.  I'd look into or ask if one off reading is anything to put too much stock into. Sometimes it's just not. 

 

I'm having a bunch of stuff done this morning.

 

 

 

 

[happypamama]

No ideas, just (((hugs))) -- this sounds so frustrating not to have good answers.

[Joules]

My first thought was low B12, but I'm sure they've tested that.

 

I found this:

https://labtestsonline.org/understanding/analytes/tibc/tab/test/#what

 

But I'm not sure if you fit anywhere on the table.  I never do.  The classic "Inflammation" and "Liver Disease" are listed under the table as possible (non-)explanations.  

[creekland]

I don't know.  I'd look into or ask if one off reading is anything to put too much stock into. Sometimes it's just not. 

 

I'm having a bunch of stuff done this morning.

 

I've googled and am reading in a little more depth - at least until mom wakes up.  I'm starting with what the test is.

 

I suppose it's still good to learn something new every day, but I'd definitely prefer a different topic.

 

Best wishes that your stuff goes well this morning!

 

No ideas, just (((hugs))) -- this sounds so frustrating not to have good answers.

 

Frustrating is one word that fits.  Depressing is another - esp when it seems so "classic" to have at least one thing figured out and fixable, and no, no it's not.  BTW, here's another piece of the puzzle - and hey - you didn't even know pieces of this color were in the puzzle!

 

But hey - it's all just stress... just like mom's chemo later today was stress back in Oct-Dec... (or I have other options of hormones or peri-menopause - the three causes of ALL unexplained issues for females).

 

Actually... stress today probably IS a factor with my mind, but it doesn't affect any of the health issues that bug me.  Those exist and/or cycle on their own schedule.

[creekland]

My first thought was low B12, but I'm sure they've tested that.

 

I found this:

https://labtestsonline.org/understanding/analytes/tibc/tab/test/#what

 

But I'm not sure if you fit anywhere on the table.  I never do.  The classic "Inflammation" and "Liver Disease" are listed under the table as possible (non-)explanations.  

 

Thanks.  This is a quick summary (different page) of what I was seeing yesterday.  If % Sat is low, then iron and/or transferrin should be low too and it's not that difficult to fix.  The problem is that those other numbers are comfortably in the normal range, so when is % Sat low with the others normal?

 

Then, of course, there's a site out there mentioning those with low % Sat numbers being 45% (or something like that) more likely to die.   :glare:  to which one must muse that dying would fix the health issues...  :lol:

 

I saw the liver issue option too - and got a little concerned, until finding that these test results also include two listed as ALT and AST, both of which are very low (still in normal range, but low) for me.  Low is GOOD - as those test enzymes that are produced when there is heart or liver disease.  They seem to show my heart and liver are just fine (phew! - esp since chest pain has been a semi-regular for about 3 years now - cardiac was tested back then and came back ok too).

 

Inflammation would fit the cyclical nature of many of the issues - and if it's the "source" I still need to figure out a common denominator cause to minimize it.

 

Naturally, fatigue is supposed to fit in with all of this - and isn't an issue/symptom in my life.  I suppose that's a good thing.  I've always considered it a good thing - except that it messes up the puzzle.

[creekland]

Just adding an update that this site seems to give a pretty good explanation of what each test is for/does - with more things for me to google down at the bottom...

 

http://www.dovemed.com/common-procedures/procedures-laboratory/iron-saturation-blood-test/

 

And that appears to be where I end for now.  I hear mom up.

 

ps  Arthritis is not an issue at all, so I know I can skip that one.  All blood count numbers were normal, so excessive bleeding shouldn't be an issue.  Uremia will be my next "hey google, what's that?" search.

[SparklyUnicorn]

I skimmed some of that.  The majority of those symptoms could explain 100,000 other things.  That's what is so fracking frustrating. 

 

 

[creekland]

I skimmed some of that.  The majority of those symptoms could explain 100,000 other things.  That's what is so fracking frustrating. 

 

Hmm, you mean these symptoms that it lists as reasons for performing the test?

 

• Fatigue, pale skin
• Dizziness
• Shortness of breath
• Heart abnormalities
• Joint pain
• Loss of libido
• Nausea and vomiting
• Abdominal pain 

Yeah... I don't have ANY of those symptoms - not even a hint of any of them.

 

And thus... a piece of the puzzle providing a color I didn't even know was part of the puzzle.   :glare:

 

It has had me wondering how possible it is to be an incorrect test result TBH, but google seems to tell me the two most likely things (based upon me and/or my history) that it could be are a blood disorder that often comes after radiation:

 

http://www.webmd.com/cancer/lymphoma/myelodysplastic-syndrome-causes-symptoms-treatment#1

 

or stomach/small intestine cancer (a couple of matching symptoms including never being hungry - but other symptoms do NOT match - like losing weight, nausea, diarrhea, or dying within a year of that symptom starting since it's been three years).

 

Out of all those options, I prefer the incorrect test result option, but something is off and has been for three years (or a little more) and is progressing.  I was told it was all nerve issues (from radiation).  Perhaps that is still it, but this test result is puzzling in a very frustrating way - all while I'm juggling spending the last 6 months to year with my mom, of course.

[creekland]

Then too, there are all the symptoms I do have - fun stuff with those too, esp when they don't fit any test results.  

 

What I thought was thyroid is probably lymph issues.  I had only looked at symptoms for that one and jumped to that conclusion since I was told it would go sooner or later.  Today I looked at where the thyroid actually is - a basic thing I should have done earlier but I've been a bit preoccupied lately. The area of my neck that's feeling the issues isn't that low.  It's much higher.

 

I will say the nice thing about researching via google is google never asks me if I'm sure I have various symptoms or scoffs at me for looking up paths that definitely aren't "it."  It lets me read and muse and ask other questions trying to provide me with the most info it can.  Now if only it could provide "test orders..."

 

But in Feb I'm going to try a local doctor I haven't seen before.  Hopefully with "a" test result (and history) she'll be inclined to agree with my desire to want to know (or rule out) causes rather than just giving me drugs to suppress symptoms.

 

If it ends up being stomach cancer, it's definitely too far advanced at this point to do anything about it.  The "catching it early" ship sailed a few years ago.  If it's a blood issue, I have no idea (yet) what comes with that.  If it's an incorrect test result, I'll just be thankful.  And if it's none of the above, hopefully Option D will be better than any of the others.

[CadenceSophia]

So I read your first post and skimmed the rest. Did your thyroid panel include RT3 or just TSH? And I gather from the last post you are having discomfort in your throat? Have you seen a GI for an endoscopy? Have you considered eosinophilic esophagitis in your googling of possible issues. It's surprising common for a rare disease. I don't know your history or other issues though si my comments are only directed toward "not well with neck pain" thyroid symptoms with normal TSH"

[SparklyUnicorn]

 

 

I will say the nice thing about researching via google is google never asks me if I'm sure I have various symptoms or scoffs at me for looking up paths that definitely aren't "it."

 

I hear ya... :glare:

 

I hope you have better luck with someone else. 

 

I'm trying to be patient, but mmm my patience is wearing thin.  I think meanwhile I'm developing an anxiety condition.  LOL 

[*LC]

 

 

ps  Arthritis is not an issue at all, so I know I can skip that one.  All blood count numbers were normal, so excessive bleeding shouldn't be an issue.  Uremia will be my next "hey google, what's that?" search.

 

Did you look up uremia? I did, because I thought it was what an old acquaintance had (it wasn't.) However, it mentions cardiovascular issues and that it is hard to diagnose when in early stages.

 

http://www.webmd.com/a-to-z-guides/tc/uremia-topic-overview.

Edited January 20, 2017 by *LC

[melmichigan]

Are you talking about your iron saturation?  If so then that will be lower before your iron and hgb are impacted.  Saturation is a reading of iron stores in the body.   Sometimes I can struggle to keep any level of saturation with a low normal ferritin and a hemoglobin on the low end of normal (like 12 is a party around here).  Low saturation is like a red flag that says if you continue without changing something then the ferritin and hemoglobin levels might be impacted.  It's also sometimes normal for woman to vary test to test based on their menses.

Edited January 20, 2017 by melmichigan

[redheadmom]

I had low ferritin last year but all my other numbers were fine. Is it possible your ferritin is low?

[gardenmom5]

stopthethyroidmadness has some good information on the FOUR iron labs (and why they recommend all four of them - not just one, or two).  you might need to scroll a bit.

[creekland]

So I read your first post and skimmed the rest. Did your thyroid panel include RT3 or just TSH? And I gather from the last post you are having discomfort in your throat? Have you seen a GI for an endoscopy? Have you considered eosinophilic esophagitis in your googling of possible issues. It's surprising common for a rare disease. I don't know your history or other issues though si my comments are only directed toward "not well with neck pain" thyroid symptoms with normal TSH"

 

I haven't yet.  I assume that will be one thing this doctor is willing to sign an order for - esp now given my mom's diagnosis of esophageal cancer (even though that one isn't genetic).  Time will tell.

 

I looked up eosinophilic esophgitis.  I can't eliminate it as an option, but if it's allergies of any sort, I don't know about them and I get the same cyclical on/off issues no matter where we go (home or traveling) and it sure doesn't seem food related (eating, not eating, or what is being eaten).  I have no problem with them checking though.  My science background tells me it's something.

 

My best guess for the chest issues to date has been costochondritis - mainly due to more or less ruling everything else out (but without an endoscopy).  There are times when "nothing" is there.  There are times when hubby isn't even allowed to feel around the area because it's too painful.  Those latter times are rare, fortunately, but still happen.  Most of the time it comes and goes within a day or couple of days.  I've learned to ignore it usually.  It doesn't really affect anything except on bad days it's painful to breathe - only because the lungs expand.

 

http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454

 

I hear ya... :glare:

 

I hope you have better luck with someone else. 

 

I'm trying to be patient, but mmm my patience is wearing thin.  I think meanwhile I'm developing an anxiety condition.  LOL 

 

How did your things go?

 

Did you look up uremia? I did, because I thought it was what an old acquaintance had (it wasn't.) However, it mentions cardiovascular issues and that it is hard to diagnose when in early stages.

 

http://www.webmd.com/a-to-z-guides/tc/uremia-topic-overview.

 

I did, but backed off that option because nothing else that the kidneys filter out is high (sodium, chloride, etc).  I assumed if there's kidney issues, I'd see it elsewhere.  I could be wrong, but it didn't seem as likely as the others.

 

Are you talking about your iron saturation?  If so then that will be lower before your iron and hgb are impacted.  Saturation is a reading of iron stores in the body.   Sometimes I can struggle to keep any level of saturation with a low normal ferritin and a hemoglobin on the low end of normal (like 12 is a party around here).  Low saturation is like a red flag that says if you continue without changing something then the ferritin and hemoglobin levels might be impacted.  It's also sometimes normal for woman to vary test to test based on their menses.

 

Interesting.  I looked up the past 3 years of trends on Fe and Transferrin.  Fe did go down from 153 to 75 in the past year.  75 is an all time low, so certainly could be a trend.  The lowest count before was 107.   Transferrin has gone up from 282 to 325.  325 is an all time high.

 

HGB is currently at 12.9 - also an all time low - and has gone down from 14.5 in the past year.  Previous low was 13.9.

 

I'm not totally sure how all of that fits together TBH, but there are some other low marks - those are just still in the normal range.

 

Menses-wise, I'm missing (or late) for that now, but not abnormally late.  That can easily fit in with my age.  I'm fully willing to blame that one on peri-menopause! ;)

 

I had low ferritin last year but all my other numbers were fine. Is it possible your ferritin is low?

 

I'm not sure which test that one is or if it's included in this "offered to the community" series.  A quick google search didn't give me the answer.

 

stopthethyroidmadness has some good information on the FOUR iron labs (and why they recommend all four of them - not just one, or two).  you might need to scroll a bit.

 

I'm going to assume the new doctor will order these other tests.  Time will tell.  I've learned that one had better not go to a doctor asking for tests or seeming to know a whole lot about anything.  They aren't particularly appreciative of that.  I'm hoping these things (retesting the iron tests, doing an endoscopy, and testing further for the thyroid) are basic enough to be protocol.

 

------

In general, I also know that my brain is fried right now with all that has gone on (medically with me) over the past three years and what's going on with my mom (since Nov, but with an awful ending coming up this year).

 

Last July (or maybe August) I'd sworn off pursuing/continuing getting any of my "usual" stuff checked out due to hitting stone walls of resistance and that being way too stressful mentally.  Honestly, I'd rather just let nature take it's course - even if it's deadly - but if it's nerve issues (as they said based upon what they think - not tests - then that's not deadly - just annoying and I can handle annoying).  It's less stressful (for my personality) to just deal with it.  

 

However, more issues keep popping up once in a while and some of those seemed like they could fit Thyroid - an easy fix.  I'm not against doctors for typical stuff (broken bones, etc) and thyroid seemed to fit in with that - hence - getting these tests done and expecting certain results.  But the real results have thrown my mind into a tailspin rekindling all that "mental garbage" that's still there from before - a clash of the wills I lost.  (I wanted them to keep checking for a cause, they wanted me to just take meds to suppress symptoms.)

 

I have to figure out what I want to do now... while dealing with my mom's stuff 8 hours from home (first chemo was yesterday)... and keeping up with farm, teaching, and family life.

 

It's a lot on the brain right now - in case that's not obvious...

 

I appreciate everyone's thoughts and potential leads.  "I" am much better when I have an idea of what "could be."  I don't like surprises.  I don't like puzzles that can't be figured out. With research I don't get hung up thinking I'm dying.  I kinda presume that will happen to all of us at some point or another.  ;)  It just gives me a sense of where the path could lead and knowing potential paths is quite helpful to my mind.

 

Google is often very good.  Google and leads from the Hive is even better (so far).

[SparklyUnicorn]

Eh fairly uneventful.  The lab tech didn't mangle my arm so that's good.  I was a little bummed to get a student doing the ultrasound because that meant having to be poked and prodded twice.  I tried to be understanding about that because I realize students need to learn by working on actual people.  And she was nice.  I just was in no mood to be poked and prodded twice. 

 

 

[Guest]

Did you get your B12 and D measured?

[SparklyUnicorn]

me?

 

yes

 

 

[Guest]

Both of you...

[SparklyUnicorn]

ah...

 

also did magnesium

 

I'm very curious.....

 

 

[mominco]

  :grouphug:  :grouphug:  Creekland

[gardenmom5]

 

 

I'm going to assume the new doctor will order these other tests.  Time will tell.  I've learned that one had better not go to a doctor asking for tests or seeming to know a whole lot about anything.  They aren't particularly appreciative of that.  I'm hoping these things (retesting the iron tests, doing an endoscopy, and testing further for the thyroid) are basic enough to be protocol.

 

 

 

do NOT assume a new dr will order all four iron labs.   they are not all 'standard'.

 

I had to push for tests I wanted - and my dr LIED to me about running them.  (it was a lie - not a misunderstanding)  I found a new dr.

[Halftime Hope]

An encouraging (I hope) story for you Creek, one that will inspire you to keep on trying. 

 

[Deleted all the personal info after Creekland saw it.]

 

All that long-winded story to say: I am still hopeful that you'll sneak up on some answers soon.  You deserve a chance to get great help and solid answers!  :grouphug:  :grouphug:

Edited January 21, 2017 by Halftime Hope

[prairiewindmomma]

What about your hypothalamus? Any chance it has been impacted?

[creekland]

Did you get your B12 and D measured?

 

No, those aren't in this panel.  If the Dr thinks there's something wrong with those, she'll have to order them.  I'm pretty sure Vit D should be fine with the amount of time we spend outside in the summer - I haven't even lost my summer "Farmer's Tan" yet.  I don't even think it's lightened up.  Plus, we'll be heading down to visit youngest son in a few weeks to recharge on it.

 

In general, we eat fairly healthily (fruits & veggies), so vitamin B 12 shouldn't be an issue either.  I'm wondering if the lower iron levels is due to cutting back more on meat.

 

  :grouphug:  :grouphug:  Creekland

 

Thanks.  Today is a day I can really use it even though it's been a "reasonably good" day for me.  It hasn't been a good day for mom...  There's so much I wish I could fix.

 

do NOT assume a new dr will order all four iron labs.   they are not all 'standard'.

 

I had to push for tests I wanted - and my dr LIED to me about running them.  (it was a lie - not a misunderstanding)  I found a new dr.

 

TBH, if I have to push any doctor for anything, I'm done with doctors.  I do not do well in places where I'm not in charge or in a real "team" effort (you know, the type of team where everyone listens to each other and can brainstorm together to work out a problem).  It's why I gave up and walked away last time.  It frustrates me that doctors get the final word in whether something can be looked into or not (and money is not an issue).  It isn't their body.  I can work with reasons for things, but "I think" isn't that good of a reason compared to test results - esp when my family doesn't have typical symptoms for pretty much anything - and reliable sites on the internet give possible options to keep considering.

 

I've been with mom (and her hospital roommates) and have seen the difficulties doctors face trying to determine what's real and what isn't.  I actually understand what an issue that is for them.  I also have come to realize that whatever I'm dealing with isn't something they've seen (at least, not with the symptoms I have), so if it's an idiotic fight over whether it's real or not, I'm not fighting a losing battle and increasing mental stress.  I'm returning to a healthy diet and que sera, sera - whatever that is.

 

This is why I determined to only go back if it's something obvious and fixable... which I thought this was.  :glare:

 

An encouraging (I hope) story for you Creek, one that will inspire you to keep on trying. 

...

All that long-winded story to say: I am still hopeful that you'll sneak up on some answers soon.  You deserve a chance to get great help and solid answers!  :grouphug:  :grouphug:

 

I am glad things worked out for him - very glad, but I don't have the tenacity to keep pushing when it's pointless, nor am I interested in suppression meds (that come with other side effects I don't currently have).

 

Time will tell what this doctor thinks - and I'll probably try to keep it to the issues immediately at hand rather than the big picture.  There's enough to work with now - esp since it's a totally different angle than looked at before.  Maybe something will come up from this angle that will tie it all together.  Maybe not.  I'll admit to being a wee bit hopeful as she's the mother of a student at school - possibly giving me a little bit of credibility to begin with.  But time will tell.  I don't take anything for granted anymore.  The Ideal World of medicine and doctors doesn't exist anymore than any other Ideal World.

[creekland]

What about your hypothalamus? Any chance it has been impacted?

 

I'll have to research that in the morning... It's about time for me to call it a night.

 

So far, trigiminal nerve and probably vagus nerve are affected by something - possibly radiation, but the radiation docs say no, the others just say they're wrong.  Who knows?  Then underarm (left side) painful lumps are unexplained - after ultrasound and 3D mammogram - and whatever causes the chest pain (which precedes radiation, so can't have been caused by it).  Add in the most recent neck stuff (& other typical thyroid symptoms like being cold, gaining weight, etc) - and the little things like hearing my pulse... it can get very frustrating, esp on bad days.

 

The original tumor is benign, not growing, and only affects my eyesight.  That hasn't changed, but is easy to live with.

 

Actually, all the constant things have become easy to live with as long as I'm not in a bum mood.  It's the variable stuff that drives me mad when it's bad - that and the new things coming up.

 

So... couple new things with mom's unexpected situation and variability - and yes - my brain is wavering between stressed (do I want to know or not?) and just giving up.  But the dr appt is made for early Feb, so I'll see how it goes.

[Guest]

B12 is one of those tests that should be done at your age. You can eat well, but have low b12. If you are cold or have anemia it may be the cause.

 

Is low D correlated with your tumor growth? A tan does not mean your D level is high enough..I have personal data on that.

.

[trulycrabby]

Hello! I just now read your thread or would have responded sooner.

 

Have you read anything on Cushings disease/syndrome? It might explain some of the hypothyroid symptoms. When you look at photos of Cushings patients online, keep in mind that the most extreme cases get photos published, and the disease stigmata (thin skin, abdominal striations, buffalo hump) can be very subtle.

 

I would not be too concerned about the low sat; now if in three months some of the other values like hgb and/or ferritin fall, then you might need to start looking closer.

[redheadmom]

I haven't yet. I assume that will be one thing this doctor is willing to sign an order for - esp now given my mom's diagnosis of esophageal cancer (even though that one isn't genetic). Time will tell.

 

I looked up eosinophilic esophgitis. I can't eliminate it as an option, but if it's allergies of any sort, I don't know about them and I get the same cyclical on/off issues no matter where we go (home or traveling) and it sure doesn't seem food related (eating, not eating, or what is being eaten). I have no problem with them checking though. My science background tells me it's something.

 

My best guess for the chest issues to date has been costochondritis - mainly due to more or less ruling everything else out (but without an endoscopy). There are times when "nothing" is there. There are times when hubby isn't even allowed to feel around the area because it's too painful. Those latter times are rare, fortunately, but still happen. Most of the time it comes and goes within a day or couple of days. I've learned to ignore it usually. It doesn't really affect anything except on bad days it's painful to breathe - only because the lungs expand.

 

http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454

 

 

How did your things go?

 

 

I did, but backed off that option because nothing else that the kidneys filter out is high (sodium, chloride, etc). I assumed if there's kidney issues, I'd see it elsewhere. I could be wrong, but it didn't seem as likely as the others.

 

 

Interesting. I looked up the past 3 years of trends on Fe and Transferrin. Fe did go down from 153 to 75 in the past year. 75 is an all time low, so certainly could be a trend. The lowest count before was 107. Transferrin has gone up from 282 to 325. 325 is an all time high.

 

HGB is currently at 12.9 - also an all time low - and has gone down from 14.5 in the past year. Previous low was 13.9.

 

I'm not totally sure how all of that fits together TBH, but there are some other low marks - those are just still in the normal range.

 

Menses-wise, I'm missing (or late) for that now, but not abnormally late. That can easily fit in with my age. I'm fully willing to blame that one on peri-menopause! ;)

 

 

I'm not sure which test that one is or if it's included in this "offered to the community" series. A quick google search didn't give me the answer.

 

 

I'm going to assume the new doctor will order these other tests. Time will tell. I've learned that one had better not go to a doctor asking for tests or seeming to know a whole lot about anything. They aren't particularly appreciative of that. I'm hoping these things (retesting the iron tests, doing an endoscopy, and testing further for the thyroid) are basic enough to be protocol.

 

------

In general, I also know that my brain is fried right now with all that has gone on (medically with me) over the past three years and what's going on with my mom (since Nov, but with an awful ending coming up this year).

 

Last July (or maybe August) I'd sworn off pursuing/continuing getting any of my "usual" stuff checked out due to hitting stone walls of resistance and that being way too stressful mentally. Honestly, I'd rather just let nature take it's course - even if it's deadly - but if it's nerve issues (as they said based upon what they think - not tests - then that's not deadly - just annoying and I can handle annoying). It's less stressful (for my personality) to just deal with it.

 

However, more issues keep popping up once in a while and some of those seemed like they could fit Thyroid - an easy fix. I'm not against doctors for typical stuff (broken bones, etc) and thyroid seemed to fit in with that - hence - getting these tests done and expecting certain results. But the real results have thrown my mind into a tailspin rekindling all that "mental garbage" that's still there from before - a clash of the wills I lost. (I wanted them to keep checking for a cause, they wanted me to just take meds to suppress symptoms.)

 

I have to figure out what I want to do now... while dealing with my mom's stuff 8 hours from home (first chemo was yesterday)... and keeping up with farm, teaching, and family life.

 

It's a lot on the brain right now - in case that's not obvious...

 

I appreciate everyone's thoughts and potential leads. "I" am much better when I have an idea of what "could be." I don't like surprises. I don't like puzzles that can't be figured out. With research I don't get hung up thinking I'm dying. I kinda presume that will happen to all of us at some point or another. ;) It just gives me a sense of where the path could lead and knowing potential paths is quite helpful to my mind.

 

Google is often very good. Google and leads from the Hive is even better (so far).

I'm am sorry that you are having so many problems. I finally got a diagnosis in 2015 after years of weird symptoms and brush offs from drs. At least I know I'm not crazy, but unfortunately there is no cure.

 

So ferritin is sometimes a separate lab from an iron panel. At least it is through my dr. I still take iron pills multiple times a week to keep it from falling again.

[Joules]

No, those aren't in this panel.  If the Dr thinks there's something wrong with those, she'll have to order them.  I'm pretty sure Vit D should be fine with the amount of time we spend outside in the summer - I haven't even lost my summer "Farmer's Tan" yet.  I don't even think it's lightened up.  Plus, we'll be heading down to visit youngest son in a few weeks to recharge on it.

 

In general, we eat fairly healthily (fruits & veggies), so vitamin B 12 shouldn't be an issue either.  I'm wondering if the lower iron levels is due to cutting back more on meat.

 

 

 

See if you can have the B12 and D checked. I have some very similar unexplained symptoms as you. I live in in Georgia...plenty of outside time, with a great t-shirt tan.  First time D was checked (in the summer!), it was 9!  It takes 5,000-10,000 IUs a day to keep it at 50.  They figure at least one of the auto-immune diseases keeps me from making my own from the sun.

 

I eat well, plenty of B12, but I give myself injections every two weeks, because again my body doesn't seem to absorb it from food.

 

Those two supplements aren't making me well, but some of the symptoms are eased by eliminating the deficiencies.

[SparklyUnicorn]

 

 

TBH, if I have to push any doctor for anything, I'm done with doctors. 

 

uh huh...I hear you...

 

:grouphug:

[creekland]

B12 is one of those tests that should be done at your age. You can eat well, but have low b12. If you are cold or have anemia it may be the cause.

 

Is low D correlated with your tumor growth? A tan does not mean your D level is high enough..I have personal data on that.

.

 

I looked back to 2013 in my records (just to be certain) - these two have never been checked.  Looking at symptoms, I don't really have any, so it makes sense to not have had them done (symptom wise).

 

I do not get abnormally tired from just being awake or from being outside doing things (from chores to longer hikes).  I don't have muscle or joint pain/weakness of any kind.  I used to in my hands/arms, but that all cleared up with carpal tunnel surgery - even though my symptoms weren't classic for it either - tests showed it was there - the surgeon confirmed it afterward.  That's one (relatively minor) problem I consider 100% fixed.

 

Hello! I just now read your thread or would have responded sooner.

 

Have you read anything on Cushings disease/syndrome? It might explain some of the hypothyroid symptoms. When you look at photos of Cushings patients online, keep in mind that the most extreme cases get photos published, and the disease stigmata (thin skin, abdominal striations, buffalo hump) can be very subtle.

 

I would not be too concerned about the low sat; now if in three months some of the other values like hgb and/or ferritin fall, then you might need to start looking closer.

 

I haven't looked at Cushings yet, but we had a pony with it some years ago...  Mom still isn't up, so I might be able to get to it (and Hypothalamus) this morning.

 

I'm am sorry that you are having so many problems. I finally got a diagnosis in 2015 after years of weird symptoms and brush offs from drs. At least I know I'm not crazy, but unfortunately there is no cure.

 

So ferritin is sometimes a separate lab from an iron panel. At least it is through my dr. I still take iron pills multiple times a week to keep it from falling again.

 

I'm glad you finally got an answer, but  :grouphug: that there's no cure.

 

If nothing comes of the doctor's appt in two weeks, I'll start adding iron to my diet to see if it changes anything - then retest with these community tests in April or May.

 

See if you can have the B12 and D checked. I have some very similar unexplained symptoms as you. I live in in Georgia...plenty of outside time, with a great t-shirt tan.  First time D was checked (in the summer!), it was 9!  It takes 5,000-10,000 IUs a day to keep it at 50.  They figure at least one of the auto-immune diseases keeps me from making my own from the sun.

 

I eat well, plenty of B12, but I give myself injections every two weeks, because again my body doesn't seem to absorb it from food.

 

Those two supplements aren't making me well, but some of the symptoms are eased by eliminating the deficiencies.

 

Interesting.  If nothing comes of the doctor appt, then I can certainly get these two tested from one of those DIY lab places.  It could be worth trying if nothing else has shown up - esp since I have no symptoms that would suggest testing Fe Sat level either.  :glare:

[Guest]

Creeklamd, being cold, low iron, and tumors can result from low b12 and d. Both are common at your age, tests are pretty cheap. Don't want to be annoyingly repetitive,.so.I will cease.

[creekland]

Creeklamd, being cold, low iron, and tumors can result from low b12 and d. Both are common at your age, tests are pretty cheap. Don't want to be annoyingly repetitive,.so.I will cease.

 

I'm not disagreeing.  Those could be worth testing and I'll end up getting them done if the doctor doesn't request it (or find something else that explains the issues).

 

Right now I'm at my mom's and she lives in a state where one can't use DIY labs.  I literally drove the 8 1/2 hours home last Tuesday to get the Community lab work done Wed morning (and drop hubby off so he can work for a living since he can't do everything remotely), then returned here right after the test (and breakfast) - well - with the drive again.  It only took me 7 hours and 20 minutes since I didn't need to stop to eat.   ;)

 

But I'm here now through this week due to mom's chemo complications - probably returning on the weekend - then teaching all of next week (for a teacher friend who is enduring her own chemo) and the doctor's appt is tossed in there as well later next week.

 

There is no time - or way - to get any testing done myself before then.  I'm certainly not going to bug mom's doctors to consider my issues...

 

I appreciate the advice - truly.  I have this week (when I'm not being active with her) to do any research I can.  That saves me time later and let's me get a plan more or less set in my mind.

 

If it's just vit D and B12 and/or Fe, I'll be happy.  I can add those in as needed.

 

It honestly never occurred to me to "second guess" doctors early on in this endeavor - only later when they weren't getting results or sending me to other specialists who might have ('cause they don't think there's a need), so if those should have been done sooner - such is life.  I can't change the past.

Edited January 21, 2017 by creekland

[melmichigan]

I don't eat a lot of meat, never have. I already mentioned where my iron levels are. When I drop (after my menses) I'm usually short of breath and tired for a few days. I supplement with high doses of iron, Ferrasorb by Thorne includes folate and high dose b12, as well as a liquid formula. I also take d3 daily. If your still menstrating, yes, it could be that simple, at least according to my hematologist. ;)

Edited January 22, 2017 by melmichigan

[creekland]

I don't eat a lot of meat, never have. I already mentioned where my iron levels are. When I drop (after my menses) I'm usually short of breath and tired for a few days. I supplement with high doses of iron, Ferrasorb by Thorne includes folate and high dose b12, as well as a liquid formula. I also take d3 daily. If your still menstrating, yes, it could be that simple, at least according to my hematologist. ;)

 

Could be, but I would think that would fit the picture better if I were in the midst or just after a cycle at the time of the blood draw.  I wasn't. The cycle should have started that day, if on time, but it hasn't started yet.  (I'm not worried about that, it sometimes comes late at this age for me and my sister who is one year older also started skipping months by now.)

 

I'll still be quite pleased if all this one turns out to be is a warning to take more iron in one form or another.  Very simple solution.

 

I spent some time yesterday looking up what all the other (normal) tests are for (if I didn't already know) - things like BUN, etc. There are 32 different results.  Most of the "unknown" ones (to me) were testing liver, heart, and kidney function.  Since all of those came back easily in the normal range, I think those organs are fine - always nice to know - so it is just that one pesky test and could be as simple as "go eat some rust."  ;)