Great news from Emily's apptmt yesterday!

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Tesscorm

Tesscorm

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So relieved!!!!! :dance: Took Emily to her rheumatologist appointment and she doesn't believe Emily has RA nor Lupus! :dance::dance::dance:

She believes that, while Emily's ANA results were elevated, it was so slight that it means nothing! She said that when auto-immune diseases run in a family, members may have higher antibodies which will be reflected in certain tests, ANA included. She said many people may have slightly higher levels of these antibodies but this does not mean that she will develop RA nor Lupus! She asked Emily tons of questions and assessed her range of movement, joints, etc and saw no other symptoms and doesn't believe the anaemia is a result of inflammation.

However (there's always a 'however' or a 'but':voodoo:), she said she would be negligent if she didn't follow up a bit more... so did send Emily for more blood tests and we have a follow-up appointment in one month.

So, one more month for complete clearance but that knot that's been in my stomach since January is almost gone! :ylol2:

Now we just have to figure out the iron thing...

Oh... her sore pinky which started this whole thing... after looking at the x-rays, she was annoyed that the x-ray was not clear! but from what she can see believes it is some sort of calcium deposit which can occur from injury. She said this 'calcium crystalization' can sometimes become inflammed and her pinky may get sore again... but nothing serious...
 
Tess, I'm sure the doc will do these: ferritin, total iron binding capacity, transferrin saturation as well as actual iron levels.
All those looked at TOGETHER, plus hemoglobin, hematocrit, MCV/MCH shall give a more accurate picture as to her anemia.

Otherwise, awesome :soledance: and thanks for updating. I was thinking of your girl as I knew your appt was around the 24th.
 
This time, I actually took a picture of the test requisition form so I wouldn't mess up the codes/names of tests. They took 9 vials of blood, I think Emily was ready to pass out! :lol:

They tested:

Creatinine(eGFR), ALT, Alk. Phosphatase, Ferritin, CBC,
Ca, P, Pth
ANA
antidsDNA
anKENA
C3CyCh50
RF

Julie, it doesn't seem that she included some of the tests you mentioned?? However, she was sent results from tests Emily did at our doctor plus tests she did at the walk-in clinic her finger first began to hurt. Perhaps she is looking at some of those results?

But, I really wonder sometimes how much her diet is affecting her iron levels. She eats fairly healthy, however, we don't eat a lot of red meat at home (am making an effort to add more) and I know Emily very rarely eats meat at lunch so her diet could certainly be a contributing factor. I've tried to tell her to up her absorption by adding vit. C when she does have iron but... she's a teen, who knows it all... like talking to a brick wall sometimes:ybatty:

We have to follow up her anaemia at our GP again in April... so, between the rheumi apptmt and GP, perhaps we'll have some idea of what's causing or what to do about the anaemia.
 
Are they calling it iron deficiency anemia or something else?
Anemia has to do with hemoglobin/erythrocytes, not iron per se. If one's hgb is low, they are considered anemic. This can be from iron deficiency (most common cause) or other reasons. V's is anemia of chronic disease.

So you ought to find out at the next f/u (or before if you can), are her iron stores low, or is her hgb low, or both, and the other stuff I listed too. All must be evaluated to assess what type of anemia is present.

If it's just common ordinary iron deficiency causing the anemia, (common in teen girls), a really good and easy to digest liquid supplement is called "Floradix". It's kind of pricey but works great; it's not strong enough for Violet, but when pregnant it's what they had me on, and I could tolerate it even with a pregnant palate. You can get it online if it isn't local to you.
 
thanks Julie! I'm going to have to follow up... to be honest, I'm becoming totally confused! with the iron issue but GPs (old and new) have said anaemic. Even before Stephen was diagnosed (May '11), Emily was already 'low in iron' (whatever that means!) (she was at '9'), her old doctor put her on supplements and, after a few months, it rose to mid-teens, she then put her on a different supplement and it went up to 20-21 but Dr. thought it was still low and to double the dose of supplements (2 tablets) and another follow up. During this time, Stephen was diagnosed and, I guess, Emily's iron issue was kind of set aside (other than continuing with the supplements)... and then I switched Emily to my doctor. She then tested Emily in September, iron was still low (stores?? Hgb???) but told her to go back to one tablet because her body wouldn't be able to absorb the full amount of the two tablets anyway. January, when her finger issue came up, tested again, still low and now told her to stop supplements because she wants to see what happens with no supplements as it doesn't seem that the supplements are making a big difference! Ugghh... I think I need to go back to step one and start again! I'm surprised I've even remembered all this to write it! :lol: Throw in Stephen's diagnosis and trying to keep track of his results and it's all becoming mush!!

Need to go back to Emily's old GP and get all info transferred. When Emily transferred to my GP, she didn't feel it was necessary to get copies of old tests, notes, etc. as there were no outstanding issues, illnesses (except iron) and the cost to me to transfer the file was $150-$200. But, now, I'm thinking it might be worth getting a record of Emily's previous bloodwork just to get a clear picture of how long, how low, what was low, etc.


How is Violet doing? Have you seen any improvement yet in her weakness, etc.?
 
Tess,
How are her periods? Some girls have low iron from their periods. Other times some people have unexplained low iron. I would get her an iron supplement called Floradix. It is made from flowers. You can order it online. It is very gentle on the stomach and well absorbed. If you call the company and tell them what her Hgb and Hct are they will tell you exactly what dose to give her.
 
As Julie, said you need iron studies as well as hemoglobin levels in get the full picture.

You should see improve in iron studies when supplements are used (with in 4 to 6 months). We had two year of iron supplements and no improve in iron levels and hemoglobin levels get worse.

If iron levels and hemoglobin do not improve with supplements you need to look for the cause.

Because the cause for by daughter has been found and treatment started(only 6 weeks), her hemoglobin level has gone up from 90 to 115, and she is no longer anemia. Iron levels have remain the same.

Keep doing what you doing and looking for the cause.
 
Thanks, Julie and Kim, re the Floradix - I knew I had read on here about a liquid supplement and was going to search through the posts to see if I could find it.

As far as her periods, how do you judge how heavy is too heavy??? From her descriptions, it seems normal enough to me. It certainly isn't an issue in as far as it's never interfered with her participation in soccer or tae kwon do (white outfit and all!).

I wish I had some of her old results!!! :facepalm: Before Stephen got sick, keeping records of tests was just never an issue. Now it seems every test is suspect and every number is important! :awe:

I'm going to follow up with our GP after the Rheumi follow up. I have a long and good relationship with our GP and can really clear this up and get her take on the Rheumi's comments.

Being anemic hasn't affected her physical energy level at all (she does strenuous exercise for 10 hours per week and, often, more) but, one area that she constantly complains about is lack of focus in class. But, hard to judge if it's truly related - she's ALWAYS struggled with this (more of a 'physical' personality) and now her classes include statistics, accounting, etc. - not exactly spellbinding stuff! :lol:
 
Tess, I don't know if the "9" you speak of is iron or hgb...must be iron as 9 would be a quite low hgb and concerning.
Your lab values may differ but here "9" would be REALLY low iron, too. V's lab's low is 50, and Violet's was 16 last check, down from 26. So 9, unless your lab has diff values is way low.

Catherine is spot on, iron studies/blood components (erythrocytes) are two different things and BOTH need done to assess an anemia.

If person's IRON is low but their erythrocytes (RBCs) are not, they AREN'T "anemic", they are just iron deficient and calling that "anemia" is a misnomer.
If a person's erythrocyes (hgb) are low (for any reason) they are ANEMIC in the proper meaning of the term and that MAY be from iron deficiency or many other causes.

I hope I've helped and not muddled you up :ywow:

You must look at the things I listed in the first reply, to get all the pieces to the puzzle. Jot 'em down and ask the GP about them.

Thanks for asking about Violet, Queen of Odd.
NO CHANGES. None. Time to stab...:voodoo:
 
Thanks everyone! It really is a huge relief when a worry is finally lifted!

Julie, you're right re the 'iron'. 9 was very low and her old GP had wanted to see it closer to 40-50 (although she'd said it's a bit difficult for a teenage girl to keep it at that level). So when she moved up into the mid-teens, GP changed the supplement and then at 20-21, an improvement but GP still thought it was low, hence doubling the supplement. Also, when she changed her supplement, she changed it to a supplement that had a more easily absorbed 'heme' (which I believe increases the amount of iron not HgB or RBC???). But, even with the doubling of the supplements, she seemed to have stalled at about 20.

So, now tell me if my understanding is correct:

Ferritin is the iron store. This iron is 'available' to be used by the body. If her Ferritin is low, she is low in iron but not necessarily 'anemic'. She could be low in iron because of her periods or diet (or other bleeding). Having low ferritin is when you would need an iron transfusion?

This is where I think my confusion lies...

HgB and/or RBC (what is the difference) transport iron through the body. If there aren't enough Hgb or RBC, then not enough 'carriers' for the iron to be transported. This then causes anemia?? What happens if you have enough Hgb/RBC but not enough iron stores - would this have the same result in that not enough iron is being transported but, in this case, because there's not enough 'iron' not because there aren't enough HgB/RBC?

What causes low HgB/RBC - can bleeding, diet cause these to be low as well? And, can some people just have tendencies to have low iron? i.e. my iron is also always low and supplements improve it but I can barely get my level to 30 (however, I am also dealing with fibroids...)

Lots of questions.. :) :bluesmurf: (closest I could get to a smiley wearing a dunce cap! :))
 
Where's Mayor Dusty and my fiancee, her brain...:shifty: when you need her...

1. Yes, "heme" iron (Hemocyte is the name of one, for example) is a better absorbed source.

2. Ferritin is an acute phase responder (varies depending upon what's happening at THAT moment in the body) and is valuable only in CONTEXT w/ TIBC, transferrin sat, and iron itself values all "tallied" so to speak, together.

3. Hgb is the O2 carrying portion of RBCs (erythrocytes) and is measured separately from RBCs.

4. RBCs and MCV/MCH are all measured separately from above

5. Yes, one can have low iron , OR low RBCs or both.

One needs iron to form hgb. Amount of iron doesn't affect amount of RBCs, just the RBCs "efficiency" if you will.
Low hgb is OFTEN caused by iron deficiency.
 
Thanks Julie, need some time to 'absorb' all that!:ywow: :study:

Dusty's off tanning somewhere, enjoying the sunsets and sunrises! :ybiggrin: :emot-dance:

And, back to Violet...:) If you don't begin to see some improvement (other than gastro inflammation levels), has her GI another plan?
 
Re: Q of O, I resched her f/u from mid-July to first week of June and already told The Saint that we'd likely need to discuss a new tx plan as I was giving HUMIRA exactly the pre-agreed upon 3 mos (up in May) and that's it.
I'm going to see what he thinks of naltrexone but honestly Tess, this kid's gut must be happy because the lactoferrin we're doing every two weeks is WAAY low.
So again, it cannot be IBD that's causing her chronic weakness and assorted oddities.
Humira has "succeeded", it greatly lowered the gut inflammation yet she feels no different.
So she either has chronic fatigue or some really obscure thing that has eluded all SIX docs in all SIX specialities that have seen her.

The only thing else I can think of is mitochondrial disease and I'm going to mention that to him too, but otherwise it'll be naltrexone and whatever they use these days for chronic fatigue.

I like stabbing :voodoo::voodoo: it makes me happy
 
Totally understand the stabbing :voodoo: desire! :)

But, how frustrating for you and Violet! :stinks: I hope it's just that the Humira needs a bit more time to kick in!
 
If anemia developes over a long period of time, activities level can still be high as the person body has justed to low hemoglobin levels. When Sarah hemoglobin was 93 (her GI considers transfusion at levels under 90) in September of last year, she was able swim 18 hours per week. It was only as the crohn's developed further that her energy level dropped, 3 months before dx.

One other thing to consider is with a girl bloods test if possible need to perform at the same time in cycle due to nature to girl iron levels. Especially if are doing blood tests everying couple of months to monitor hemoglobin and iron levels.

Hope this makes sense.

Please come look my poor spelling and grammer.

Catherine
 
Thanks Catharine for all the info! Good point re the time of month, I've never thought of that but can see how that could make a big difference!
 
Woohoo! Fab news Tess! I am so, happy, happy, happy for you and Emily! :panda::panda::panda:

If Emily's Hb is normal and iron is the issue then her stores will be depleted. It will be the iron stores that are keeping her Hb up. She must be running very low though and perhaps the supplements are/were just keeping her on an even, albeit low, keel.

Also bear in mind that apart from the demands of menstruation and her diet, the level and amount of exercise that Emily is participating in will also place an increased demand on her body for iron due the likely increased production of red blood cells and loss of iron through sweating.

Dusty. xxx
 
Thanks Dusty! :)

I didn't know there was a connection between exercise and iron. :dog:

I've started making 'study' notes on iron, Hgb, RBC in a notebook.. :lol: Feel like I'm back at school doing a project! Even if her low iron is due to non-critical reasons (ie diet, menstruation, exercise, etc.) still need to somehow get her iron up to a decent level so... better get this old head working. :)


By the way, you were missed! :lol: Hope you had some nice days away! :)
 
We were told Sarah low iron levels were due to much exercise,and she would also need iron tablets while swmming.
 
:shifty-t: Funny, in all the years both my kids have been involved in competitive sports, I don't ever remember anyone mentioning this before! Maybe doesn't completely explain her levels but certainly good to know, thanks!
 
Yeah Tess!!

At everyone else - you all are amazing! I get the BEST information from listening in on your conversations... I feel like an eves dropper as I've nothing to add... but wow... Thanks!
 
Tess, just for interest. We told about iron and sport, by a Sports GP who is also a doctor for the Australian Olympic Swimming Team.
 
Resurrecting this thread because I just got Emily latest test results...

Her ferritin is 13 (normal 10-80) so a little on the low side but not below normal; her HGB is 116 (normal 140-175) so this is low. But, she so confuses me!!!!

First off, she has no symptoms of anything... but she complains she is always 'sleepy'. She eats fairly well and gets, on average, 7 hours sleep per night and I rarely find her napping during the day (maybe once or twice a month) Now her typical activities:

-tae kwon do, 1.5-3 hours, 3 times per week
-soccer, 2 hours, 2-3 times per week (sometimes on the same night as tae kwon do - she finishes tkd at 8:30 and starts soccer at 9!)
- YMCA - usually once a week to go swimming, volleyball, etc.
- works at a cafe 20-35 hours per week (sometimes starting at 5am :eek:)
- free evenings she goes dancing or wants to go out for bubble tea, ice cream, etc. - rarely will just veg and watch tv, etc. Always has to be on the go, go, go...

Nurse called and said dr is happy to refer to a hematologist (all was good with rheumi) but dr. doesn't think the blood results explain the 'sleepiness' (meaning that she doesn't believe hematologist will help?).

So WTH??? Can you really be 'sleepy' and still have the energy to do all that she does??? She says it's not that she doesn't have the energy to do things, just that she so often feels 'sleepy' and that it's not normal! When your kids were fatigued, did you find it was like this? Before Stephen's diagnosis, when he was fatigued, he would get home from school and sleep 2-4 hours, almost every day.

She's getting mad at me because I'm not taking her seriously (WTF, we've gone to the dr umpteen times, to a psychiatrist because of the related 'focus' issues (waste of time!), to a rheumi and back to dr and possibly hematologist!!! :ybatty: I'm telling her she needs to cut back on some of her activities and just veg sometimes... she gets mad!

I don't want to totally discount what she's saying because I know Catherine's experience with her daughter (anemia was her main symptom) but I also don't want to be looking for the worst when maybe it's just a case of being 'too busy'!

Sorry it's so long! :p

Thoughts? Are there any other tests or things I should be looking for??:shifty:
 
Hmmm...hard to say. When O is fatigued it is all out fatigue like S. A bit ago I was feeling the same was as Emily. I was willing my body here and there to do what I needed it to. Onc I got there my enthusiasm etc kicked in but I could fall asleep on a dime. They took some blood at my check up and I came up a little low on rion but then also low on B12. In all the reading I am doing on clean diet (and I know Emily eats pretty clean) there are so many things that can cause sleepy feelings without it being in your blood. Did they test all her other vitamin levels? Is she eating enough? Enough variety? Does she take a multi vitamin? A good naturalpathic doc will tend to look a lot closer (look at all vitamin levels in blood, lifestyle, nutrition) at a symptom like this and test a lot of things but the key is "a good one". We have a bunch in our town who were MD's and went into Naturalpathic medicine and they are making big news. People are swearing by them. I am thinking about going to one for what I think are Candida issues...Candida can make you sleepy also.

All that said, um yeah..cut back a bit girlfriend it is no wonder you are tired!
 
Sounds like she is wearing herself out! I know teens are like energizer bunnies, but wow! Ryan could give her some lessons on "chillin". He is busy with school/music but there are Saturdays where his only move is his thumbs (video games!)!! Nothing wrong with a lazy day! Not sure 7 hours is enough sleep for a teen either. I know she won't listen to us though :)

Got a teen too! Sending hugs your way!
 
B12... I know we've checked her vitamin levels but don't remember specifically about B12. Will ask. And, maybe a naturopath is a good idea for her... I actually never thought of that for her (or at least don't remember considering it :lol:), a naturopath she would listen to, even if they tell her what I'm telling her! She does eat well but maybe not enough or maybe not enough of the right balance??? Agree that finding a good one is key. I wonder if our GP could recommend one??

Thyroid - tested and all was good.

jmckinley - :lol: yep, Stephen very much enjoys his lazy days! She's always been go-go-go!!! For years, Stephen would be 'moving his thumbs' :lol: while her favourite video game was the one where there's a mat and you copy the dance steps on the screen (maybe called Dance Revolution???)... I tried to do it a few times and was dying after 5 minutes, she'd do it for 1+ hours! :yfaint: I swear the fast footwork she learned from the game gained her a spot on a higher level soccer team once!

I'm really leaning towards the 'wearing herself out' but... OMG, it's like talking to a brick wall!

I'm seeing our GP Tues for my own issues so told the nurse I'd discuss the hematologist with her then...
 
That's a really difficult one! Kids are so difficult to tell sometimes when they are actually ill or just hormonal or just plain tired. Maybe the haematologist will have some idea of what's wrong. Andrew often gets quite tired but I never know whether it's just going through puberty, etc or whether it's the Crohns. I have learnt never to discount anything though as I have said before - all his blood tests have been normal from before diagnosis to now. At the risk of her being cross with you again, maybe she could try to cut down activities for a week or so just to see if it makes a difference.
 
Shot in the dark...does she ever have a meal that is heavily carbs with little to no protein? Obviously simple carbs are worse (cookies, white rice, white bread, pizzas etc) but even if complex carbs loading (whole grains) can cause a sleepy feelings later ...your body has energy but you are sleepy. Best way to prevent this is always eat complex carbs and pair a protein with the carbs...ie: yogurt fruit and hard boiled egg or egg whites...rice with beans...fruit with a scant handful of nuts...you get the idea...helps keep the blood sugar on an even keel.
 
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I would take the haematologist appointment. Its really hard to tell with girls and irons levels, whether should worry.
 
Tesscorm said:
Oh... her sore pinky which started this whole thing... after looking at the x-rays, she was annoyed that the x-ray was not clear! but from what she can see believes it is some sort of calcium deposit which can occur from injury. She said this 'calcium crystalization' can sometimes become inflammed and her pinky may get sore again... but nothing serious...
Click to expand...


My mother-in-law has multiple of those on her hands. Yes they will hurt from time to time. The older she gets the worse she says they become. SORRY.

I'm so glad for the good results!:dance:
 
Crohnsinct - she tries to eat 5-6 times per day and typical meals would be one egg with whole wheat melba toast or brown rice, leftover meat in a whole wheat tortilla with veggies, peanut butter on a crumpet, cereal is either Special K or Mini Wheats; she will have mainly whatever we eat for dinner so some rice, potato or pasta but rarely any bread. Snacks are a few nuts, fruits, veggies. Some but few simple carbs. I do think she eats fairly well???

Patricia - OMG, that never crossed my mind and I just googled symptoms and SO MANY fit!!! I can't believe I never considered this as we did have to take her to a sleep disorder clinic when she was 3 or 4 because she would wake so often at night. Both her ped and the sleep clinic have moved! :ymad: Now I wish I had those results!! At the time, it was decided was that her tonsils and adenoids had to be removed because they were causing sleep apnea symptoms (which we did) and, to be honest, I never thought about it again. But, she has had minor 'sinus' issues always (actually much less in the last few years), she wakes coughing, gets up to go to the bathroom regularly and she grinds her teeth horribly sometimes (we've noticed this happens when she's not sleeping well due to a cold, etc. but this has been better the last couple of years too. And, my mom has sleep apnea! Hmmm, thank you for mentioning this! I am definitely going to ask the GP on Tuesday. Not sure that it relates to the anemia but it definitely relates to her complaints about sleepiness no matter how much she sleeps, her lack of focus in class although she is determined and motivated to do well, even her irritability. :worthy:
 
Hi ... sorry about your daughter. How old is she? (Not sure if she is doing all those activities AND work while going to school?) I would follow up with a hemotologist as suggested. B12 should be tested too. Does she take supplements now? 7 hours does not seem like enough sleep for someone so fatigued ... :( ... please keep us posted.
 
Tess,
Patricia has a great point about sleep apnea. Especially since she has had problems in the past. It is definitly something to look into.
 
She's 19 and does take a multi-vitamin.

Once she starts school, next week, she will be cutting down her work to just 4-5 hrs/wk and her 'real' soccer season has ended, so the 'off' season will be just once, maybe twice per week (we'll see... she's told coach that she can only attend games off season, once a week, he's saying practices are mandatory. Negotiations continue...:lol:). TKD schedule won't change much (2-3 times/wk) but seems to be a bit more flexible than soccer re attendance. I still think it's too much because although work and soccer will lessen, the school demands take their place but it takes time to get through that brick wall!

I do think the sleep disorder could be a real possibility! It's been so long since her tonsil operation that my memory is a bit vague :redface:, she reminded me last night that her adenoids had NOT been removed. Now I do remember being disappointed as she'd continued to have sinus/sleep problems (although less) and feeling that they should have but didn't remove them. I'm sure they had a reason but just can't remember. (Another reason why we should always have copies of results, etc.!) Perhaps this could be a 'relatively' easy fix!! I'm going to try to record her sleeping this weekend and see what that will show???

Thank you so much!!... I'd hesitated a bit because I'd thought, really, this isn't the place to post about something that most likely wasn't a Crohn's issue but you all ALWAYS have such great advice... I went ahead because I wanted that advice! :) I'm so glad I did! :ghug:
 
Has vitamin D been tested. A friend of mind went a sleep clinic who found it was vitamin d was low. They said it has important role in sleep.
 
A crude check for sleep apnea is to simply listen to her breathing while she's asleep. If there's a pause of more than 10 seconds than that would likely be an apnea. If there is a distinct sudden deep in drawn breath at the end of the pause - a gasp perhaps, then that is definitely an apneic event. If there are more than 5 in an hour then that is definitely cause for sleep study.

But you can have fewer apneas and still have significant daytime symptoms.

She may also have other reasons for sleep disturbance like involuntary movement of her limbs - these can be quite small but cause sleep to be disrupted enough that she never gets into deep sleep long enough.
 
Matt had awful issues with disrupted sleep throughout primary school which came to head when he was about 11 y/o IIRC. He wouldn't necessarily wake up but his breathing was atrocious and he was fatigued as a result of it. I took him to the GP and he felt the issue was enlarged turbinates so he was referred onto an ENT (Ear, Nose and Throat...not sure if you call them that there) specialist. Sure enough that was the problem and it was bad enough that he had to have them surgically reduced, it was day surgery. Might be something else to ask about??

Dusty. xxx
 
Funny, I've never even heard that word, turbanites, before! But, ENT issues have always been a problem for Em... tonsils out, lots of coughing (determined she had mild allergies and 'too much' mucous, resolved with a medication that was a miracle!!!), had a 'crooked' ear canal that prevented proper clearing/drainage so, first cold of the year would lead to constant 'plugged' sensation, complained of 'buzzing' due to the plugged sensation (while surgery was an option, it had risks and no guarantee so ENT recommended we wait to see if the canal straightened out as she grew - seems to have worked as this hasn't been an issue for a couple of years now), and then every cold led to the coughing, congestion, plugged sensation, couldn't sleep, would grind her teeth, etc., etc. Strangely enough, she rarely had ear infections???

Our plan now is for me to record Em sleeping - just have to figure out the logistics (ie what's going to tape long enough?). From there, we'll discuss a sleep disorder clinic. In the meantime, dr is setting up apptmt with hematologist. Doesn't think it's related but wants to follow up on the anemia anyway... However, one connection we discussed is that she sometimes complains of restless leg syndrome (although not very often) but, the RLS can be related to low iron and the RLS sensation could then be causing sleep disturbance.

Unfortunately, between the discussions above and then my own medical issues (nothing serious...), I completely forgot to ask about Em's B12 and D levels! :ybatty: Oh well, will ask at next appt and mention the turbanites and adenoids again.

:)
 
Wow that sounds like alot of organising! Hope you manage to figure out something that can video long enough so you can get something sorted. Would be nice if it is something fixable!
Sometimes I think we should create an app so that we can keep track of all the symptoms, tests, diet, etc that we mum's have to remember!
 
OMG, you're so right!! :ybatty: In the next 6 weeks, I've got an apptmt with my gynecologist, dentist and my annual physical, Stephen's GP follow-up re enzymes and his new GI appointment. I'm not including Em's annual physical nor any sleep disorder apptmts nor her hematologist! :eek: And then, of course, am too much of a control freak to ask my husband to just go to any of the apptmts - he wouldn't ask the right questions! :lol: Thank God my bosses are understanding! :worthy:

I am hoping that the iron, sleepiness, etc. can be resolved easily :) To 'record', am thinking of just setting up my camera on 'video' and see how long it goes??? I don't necessarily need the entire night recorded (plus, who's going to watch THAT!?! - now that will be an 'edge of your seat' show! Sequel to 'Watching your paint dry!' :lol:)
 
Sounds to me like she's running off adrenaline; but then again, I'm no expert.

My head is spinning about anemia. My doc just did blood work to check my ferritin levels. Various levels have been slowly but steadily dropping while others have been slowly but steadily rising. Doc said that I was right about most likely being anemic on this blood test. That's why the ferritin levels were drawn time I presume.

When I was talking with my daughter's GI doc and I mentioned some info on my labs, I got that look. I know that look. I've known this doc since my son was 4 months old. He's now 19. ) I've seen it way too many times in the past nineteen years. I am suspicious of what a dx for me could be. That look says I'm in the right church. Maybe not the right pew but the right church. Ha, ha.

I don't have much to offer you except that I do know exercise does affect iron level. Other than that, my head is spinning! When I get my blood results, I may be back here with lots of questions looking for lots of help. You're going to be an expert on anemia before you know it.. Snicker, snicker.

Maybe you can get Emily to have a movie night at your house, then at least you know she will be sitting down getting a little rest. LOL!

Blessings, and keep us posted. NL
 
Catherine also mentioned that iron can be affected by exercise. I did ask 'a' doctor, can't remember which one now :blush:, but they didn't seem to think it would have enough of an impact to affect levels??? Given her level of activity, it will be something I'll mention to the hema and see that he/she says.

:)
 
When I got the advice that iron was effected by exercise, it was made on the bases that Sarah was swimming 8 sessions a week which equal between 45-55 kilometres a week.
 
Wow, 45-55 km a week! That's sounds incredible!!! (Especially to a couch potato like me! :lol:)

While I'm not discounting what the doctor said, I think that doctors who specialize in sports, are more inclined to consider these connections (iron and activity level). Although, having said that, as active as Emily is, she's not at the same intensity as Sarah! :)
 
Tess, sleep study sounds like a good idea. Hubby is going to get one asap per his doc appt yesterday. I took him to see my pcp. She is awesome and thorough. Hubby will most likely wait until after my surgery to get his endoscopy and colonoscopy done. Colonoscopy due to age, endoscopy due to GERD.

I am positive hubby has sleep apnea and has had it since before I married him. Just like Em, he is tired no matter how much sleep he gets. He's let it go way too long. You should see how exhauseted he is everyday.

What surgery are you having done? PM me if you don't want to publicise it. I am having surgery Oct 1st. I really need to see pulmonology before going into surgery, but with all the other test going on, I just can't fit one more thing in. I'm sure you understand one hundered percent. :medal1:

Keep us posted.

Blessings and prayers coming your whole families way, NL
 
Did I say something misleading about surgery??? In some post, I may have mentioned that I have fibroids and that the doctor mentioned surgery might be an option, but it's not something that is being planned or even discussed beyond that.

So, no, you guys aren't getting rid of me, not even for a little while! :ytongue:
 

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