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Attolia

NEW UPDATE + Question - Heart Problems vs Anxiety in teen? or something else entirely?

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UPDATE 3

DD had her one month check up for her iron levels.  The NP said at the appointment that she would be excited to see a 1-2 point increase in dd's hemoglobin.  She called yesterday to give me the lab results and she was flabbergasted - Her hemoglobin went from 7 to 12.5 and her ferritin levels are also in normal range now.  NP said that the Hema-plex must be a heck of a lot better than the prescription iron.  We will not have the celiac results back until next week.  NP wants dd to continue 2 tablets a day (170mg of iron, 944% of her daily iron) for one more month and then take 1 tablet/day for 2 months and then she will recheck the iron at 3 months.  This seems like a solid plan.

We are excited about this progress but I also have a concern.  Just a few days ago and once last week dd forgot her mid morning tablet.  By late afternoon/early evening she was having a difficult time breathing again and she was exhausted.  Both days I could see the change and asked her about her dose, which she then confessed to accidentally missing.  It is concerning to me that someone could take 944% of iron for days, have a normal hemoglobin and ferritin, but feel symptomatic if they miss a single dose?  Would the HIVE be concerned?  I can't seem to find a medical reason for this?  If she had something more going on then her levels wouldn't be normal right?  I did mention this concern to NP at the appointment.  When she called she said that she looked into it and simply can't find a medical reason for this either.

Thanks for your thoughts on this ❤️ 

UPDATE 2-

To answer all the questions regarding what was tested, here are her results. I will just list what was NOT in normal range.  Her vitamin D was low but not out of range.

CBC

Hemoglobin 7  (12-15 range) LOW

HCT 26 (35-45) LOW

MCV 54 (78-95) LOW

MCH 15.8 (26-32) LOW

MCHC 29 (33.5-35.5) LOW

RDW 22 (12-15.1) HIGH

Platelets 374 (165-353) HIGH

CMP - honestly, I think these are both off because she does NOT drink enough water

Protein 8.5 (5.5-8) HIGH

Osmolality, calculated 265 (270-290) LOW

Reticulocyte Count - I'll put full results since this was a HUGE concern

Reticulocyte Absolute 1.74 (.1-1.8)

Hematocrit 26.1 (35-45) LOW

Autocorrected Reticulocytes 1.1 (.5-2.5)

Components

Ferritin 1 (12-307) LOW

Iron 10 (35-150) LOW

Transferrin 531 (2150380) HIGH

Iron % Saturation 2 (15-50%)

From what I see, every number that is off can be caused by anemia.  Also the MCV would be high, rather than low, if it was a B12 deficiency rather than an iron deficiency.

 

UPDATE

I think (hope) the HIVE has solved this one.

She is severely, severely anemic. Like, shouldn't be walking anemic.  But no one ever thought to check that 🤦‍♀️  Three-ish years and several doctors later, I think the HIVE should be her PCP.  haha

 

DD16 has been struggling the last few years.  It has actually been very life altering for our entire family.  We always loved to walk and hike as a family and we pretty much had to stop, slow the pace way down, or go without her.  Any amount of exercise exhausts her (just a slightly brisk walk).  She can't breathe and her heart races.  She is thin and these problems came on fairly suddenly.  I don't believe it is just being "out of shape".  She also has episodes where she isn't exercising but she feels like her heart is racing and she can't breathe.  They don't necessarily seem to surround stressful times or experiences. She saw the Dr a few times about 2-3 years ago.  This Dr. always say that it is anxiety.  She did a breathing test on her for asthma and that was clear and she ordered a chest x-ray too (this has been a few years ago).  DD was so offended that her Dr. kept saying anxiety that she didn't want to see the Dr. again. To add to it, the past year she has struggled with unexplainable shoulder pain in her right shoulder that we cannot resolve. Last week, she had a horrible episode.  She said that it felt like there was a weight on her chest, squeezing pain, she felt like like she could hardly breathe, and her heart was racing.  Nothing stressful took place at the time.  She was walking to a class and I had to pick her up early.  I took her to an urgent care that is right by the school and rarely has a wait and this Dr was very very thorough.  Her EKG was fine, he said that the EKG is limited though.  He had her do squats while he listened to her heart and every time she would do a squat her heart would race.  Like he was genuinely surprised at how fast it would zip with a simple squat.  He doesn't think her problems are anxiety and he wants her to see a cardiologist for an echocardiogram.  It will be a wait to get in with a cardiologist.

I just keep thinking the past few years that a 16 year old shouldn't be so limited physically.  Something is definitely wrong with her but her primary Dr won't push to find out.  

So what says the HIVE?  What in the world do you think could be going on?  Could it simply be anxiety?  I just have no idea.  I worry about her.  She has had a rough week and has finals, etc.  

Edited by Attolia
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It doesn't sound like anxiety to me.  I do think she should see a cardiologist.  If nothing else, you will rule out anything physically wrong - you don't want to mess around with heart issues.  She needs an echocardiogram and maybe a stress test?  I just wore a holter monitor for 48 hours - much better than an EKG.  Please keep us updated.

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I would get a full cardiac work up before just throwing up one's hands and saying "it's just anxiety."  She seems to be showing signs of something going on with her heart, rather than anxiety.  She may have an electrical problem (one of my kids does.)  Or she may have something else.  She is already being limited.  Perhaps, with proper management, she can lessen her limitations.  I would also look for a new primary care doc.  Yours doesn't seem to want to find an answer and is being lazy.  

Edited by dirty ethel rackham
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I'd definitely want a full cardiac work up.

Also, is she anemic? I've had some of those symptoms in the past due to that.

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Concurring with others. I would push to get in with the cardio ASAP. The fact that it's happening with exercise is concerning for me. 

How long of a wait? You may also try for a Pedi Cardiologist to cover your bets. I know she's 16, but I think they would still see her, so might be a good place to try and get on a wait list if you can get a referral from the ER/UC doc. 

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My sister was having similar problems a few years ago.  It got bad enough on a vacation that she went to the ER.  The doctor said it was just a panic attack.  She knew it wasn't panic attacks, and eventually talk her doctor into doing testing.  It turned out to be hyperactive thyroid.  She is now on medication and doing much better.  I would definitely push for more investigation into cardiac but also thyroid problems.

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Totally agree with cardiology work up. And potentially thyroid or other issues as mentioned above. Addison’s?

Heart issues can themselves cause anxiety. The emotional reaction attached to racing heart or skipped beat is anxiety.  

Has she had any illness that could have compromised heart function?  

For example Rheumatic fever stll happens and can still damage the heart tough less common now perhaps than 75 years ago.  

I think mitochondrial dysfunction can overlap with that. If heart normal but mitochondria not giving enough energy .  

I have some health issues that seem to overlap related to, probably post Lyme and “chronic fatigue syndrome “.     

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34 minutes ago, Attolia said:

Last week, she had a horrible episode.  She said that it felt like there was a weight on her chest, squeezing pain, she felt like like she could hardly breathe, and her heart was racing.  Nothing stressful took place at the time.  She was walking to a class and I had to pick her up early.  I took her to an urgent care that is right by the school

To be honest, the next time that happens, I would go right to the ER.  If you can, research now where the nearest cardiac hospital is so that when you do go to the ER, you know exactly which ER to go to.

 

Reading what you wrote, I feel like this is screaming cardiac problem.  And what I am feeling, reading your post, is that she is not being taken seriously because she is young and female.  Docs so often think 45yr old overweight guy when they think cardiac problems and not 16 yr old female.  And if it were me and my kid, I would would be taking her straight to an ER next time and doing what I needed to do to make sure that the ER does all those cardiac testing things.  EKG, stress test, blood tests, etc, specifically because I would want to ensure that she isn't blown off again.  

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41 minutes ago, Attolia said:

are anxiety and he wants her to see a cardiologist for an echocardiogram.  It will be a wait to get in with a cardiologist.

 

Push.  Be a mamma bear.  

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1 minute ago, Pen said:

 

Push.  Be a mamma bear.  

 

Do you have an appointment already?  Ask to be on cancellation list for anything sooner.  

And call office daily. Because if someone is on phone as they get cancellation they may give it to the person on the phone right then rather than go to their list. 

Edited by Pen
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Heart problems, thyroid problems, anemia... that's what first comes to mind.  Another possibility is allergies.

Two long-shot thoughts...  Do migraines run in your family?  We have a strong migraine gene in our family, and some of my kids have gone through years where they have odd symptoms of a migraine but not an actual headache.  It often would feel like they just couldn't get enough air, and they'd have vertigo and light-headedness too.  Also, has your dd ever tried to go gluten-free?  One of my dd's had weird symptoms for years.  She would often complain about a feeling she had in her throat, like it was tightening, and she'd get pains in her chest.  Strenuous exercise was a real effort for her.

Finally in college, she read about having a sensitivity toward gluten, and decided to give a GF diet a try.  It was amazing!  She went completely gluten-free, and it has solved all of those problems completely.  She's not a diagnosed celiac, but just has a real sensitivity toward gluten.  She's been on a complete GF diet now for about 5 years, and what a difference.  She's now a runner and hikes mountains.

 

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Definitely see the cardiologist, but also, has she been checked for anemia? Everything but the shoulder pain fits with anemia. 

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find a new dr, advocate for your child and push for answers.

 

I've a friend who really had to push for why her adopted son wasn't growing well.   inadequate growth hormone, but my point is she had to push.   I had to push, and fire my long term ped to get answers about dudeling.

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I would get her in to a pediatric cardiologist ASAP.

Two of my girls and I have heart defects.  IME, pediatric cardiologists are much better at diagnosing than regular cardiologists.

She should definitely have a cardiac echo.  

When I have echos done, a tech does the test and records the results for the cardiologist to review.  When my girls have echos, the cardiologist does the test.  It is much, much better.  If the doctor sees something unusual he can look around in real time instead of hoping that the tech recorded a possible abnormality.

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If you are in the USA, she needs an appointment with an M.D. who is a "Board Certified" Internal Medicine/Cardiology doctor.

That doctor may order a "Stress EKG" and/or other examinations to try to diagnose the problem.

I hope it is minor.

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I would look for a cardiologist familiar with typical heart problems but also with connective tissue diseases (there are a whole bunch). The joint pain could be connective tissue related, and CTD often have associated heart issues. Additionally, some CTDs are associated with POTS or other disorders where the body becomes dysregulated (dysautonomia). Examples: https://www.marfan.org/http://www.loeysdietz.org/en/https://www.ehlers-danlos.com/what-is-eds/ 

A hospital with a good cardiac genetics program is a good bet. Congenital heart clinic as mentioned before is also a good bet. 

I would also want the ped to check things like thyroid, etc. It sounds like you need a new one if the urgent care doc was more thorough. I would ask around and get that started while you wait to get into the cardiologist. It wouldn't hurt to be one more than one waiting list if that's a possibility where you live.

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It's true that mental illness such as anxiety and depression can present with weird, inexplicable physical symptoms. However, I'd definitely want to rule out anything physical first, and shame on your doctor for not doing so! *hugs* It looks like everybody else has given great advice.

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LIke Kbutton, I would have her evaluated for POTS and connective tissue disorder.  My daughter has both and I could have written your same post a few years ago.  POTS often starts in the teen years, and is most common in thin, athletic girls. 

DD went from being an honor student, 2 sport athlete with bounds of energy, to the point now of starting permanent disability paperwork in 5 years.  Some people go into remission and some don't they don't know what causes POTS and they don't know why some people seem to rebound and others don't.  Almost 100% of my daughters day involves taking care of her health.  Without a proper diagnosis, I can see that he would have likely been diagnosed with a mental health disorder and heavily MIS-medicated by now. 

If you are in the Portland, Oregon area Dr Marc Legras is a pediatric cardiologist who is a specialist in POTS. Personally can't stand him or his bedside manners, but he did diagnose my daughter and that was a huge blessing.

Theres is info online about a poor mans tilt table test, which can allow you to do a basic heart rate check which is used in diagnosing POTS. If you can't find it let me know and I can type out the instructions for you.

Info on POTS written by Dr Le Gras 

Info on Joint Hypermobility

Edited by Tap
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Agreeing with the others.  Did the doctor order any fasting blood tests?  I would want the full work up with thyroid, blood sugars, CBC with dif, etc.  I would also head to a heart hospital or Children's hospital with the next episode.  That can get you on a fast track to the specialists.  Blood would work have results in a few hours.  Cardiac work up could be done quickly as well.  If those are all fine, then I would look at mitchondrial or other issues.  Mito can have heart issues and certainly often has energy/endurance issues.

 

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12 hours ago, Tap said:

LIke Kbutton, I would have her evaluated for POTS and connective tissue disorder.  My daughter has both and I could have written your same post a few years ago.  POTS often starts in the teen years, and is most common in thin, athletic girls. 

DD went from being an honor student, 2 sport athlete with bounds of energy, to the point now of starting permanent disability paperwork in 5 years.  Some people go into remission and some don't they don't know what causes POTS and they don't know why some people seem to rebound and others don't.  Almost 100% of my daughters day involves taking care of her health.  Without a proper diagnosis, I can see that he would have likely been diagnosed with a mental health disorder and heavily MIS-medicated by now. 

If you are in the Portland, Oregon area Dr Marc Legras is a pediatric cardiologist who is a specialist in POTS. Personally can't stand him or his bedside manners, but he did diagnose my daughter and that was a huge blessing.

Theres is info online about a poor mans tilt table test, which can allow you to do a basic heart rate check which is used in diagnosing POTS. If you can't find it let me know and I can type out the instructions for you.

Info on POTS written by Dr Le Gras 

Info on Joint Hypermobility

This.  My dd has both as well.  Severe tachycardia is common with her as is chronic pain, especially in her neck and shoulders.

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Something that you could look at, is the way that she breathes?
Particularly, her balance between Inhaling and Exhaling?
When we breathe in, we absorb oxygen and then expel carbon dioxide CO2, as we breathe out.

But the levels of O2 and CO2 in the blood, need to be kept in balance and determine our PH level.
Their is a mechanism in our brain stem, that constantly monitors our CO2 levels
If CO2 levels drop to low, then this causes the arteries and blood vessels to contract. As well as the bronchial tubes.
It does this, to slow down the blood flow and reduce the breathing out of CO2.

This causes the heart to race, to cope with the reduced blood flow. It also reduces blood flow and oxygen supply to the muscles and the brain.
Where all of the symptoms that you described.  Can be caused by a 'manner of breathing'.  Where more air is breathed out, than is breathed in. Resulting in a CO2 shortage. Which is termed as 'Hypocapnia'.

So to start with, you could try observing her breathing.  How deeply she breathes in, and then her exhalation?

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Definitely see the cardiologist as soon as possible. It sounds like supraventricular tachycardia to me and possibly PoTS. My SVT started showing up in my teens and everyone thought it was just anxiety. It is really quite frightening to a young adult to have your heart race so I hope she gets a proper diagnosis soon. 

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22 hours ago, Æthelthryth the Texan said:

Concurring with others. I would push to get in with the cardio ASAP. The fact that it's happening with exercise is concerning for me. 

How long of a wait? You may also try for a Pedi Cardiologist to cover your bets. I know she's 16, but I think they would still see her, so might be a good place to try and get on a wait list if you can get a referral from the ER/UC doc. 

 

 

January 10th, I asked them to put me on a wait list as well. I am hopeful they will call sooner.  She is schedule with a Pediatric Cardiologist.

@Pen

 

 

Edited by Attolia
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22 hours ago, Pawz4me said:

I'd definitely want a full cardiac work up.

Also, is she anemic? I've had some of those symptoms in the past due to that.

 

@Ktgrok

@J-rap

I honestly can't remember if they've ever tested this at all.  I read some of the replies yesterday and then looked it up and you are right, anemia seems like an option.  I called and she will see a NP today to see if we can get that tested.  Thanks.

Edited by Attolia
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22 hours ago, Loowit said:

My sister was having similar problems a few years ago.  It got bad enough on a vacation that she went to the ER.  The doctor said it was just a panic attack.  She knew it wasn't panic attacks, and eventually talk her doctor into doing testing.  It turned out to be hyperactive thyroid.  She is now on medication and doing much better.  I would definitely push for more investigation into cardiac but also thyroid problems.

 

@J-rap

@Ottakee

She has Hashimoto's.  I believe she was having these problems before she was diagnosed except she was also extremely cold, tired, and irritable.  She still struggles with a degree of cold/tired.  Her thyroid isn't too low and she isn't hyperthyroid at all.  In fact, the DR would like for her to take a little more meds but she isn't willing because she already struggles with this heart racing and she is afraid.  She seems sensitive to meds.  I've wondered if she needs to be off a desiccated med and on levothyroxine.  I just don't know.

 

 

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21 hours ago, maize said:

This is coming from left field, but could she be anorexic? 

 

No, she is small but she eats a good bit.  She treats herself like she is hypoglycemic honestly.  She can't stand to go too long without food or she feels sick. 

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21 hours ago, J-rap said:

Heart problems, thyroid problems, anemia... that's what first comes to mind.  Another possibility is allergies.

Two long-shot thoughts...  Do migraines run in your family?  We have a strong migraine gene in our family, and some of my kids have gone through years where they have odd symptoms of a migraine but not an actual headache.  It often would feel like they just couldn't get enough air, and they'd have vertigo and light-headedness too.  Also, has your dd ever tried to go gluten-free?  One of my dd's had weird symptoms for years.  She would often complain about a feeling she had in her throat, like it was tightening, and she'd get pains in her chest.  Strenuous exercise was a real effort for her.

Finally in college, she read about having a sensitivity toward gluten, and decided to give a GF diet a try.  It was amazing!  She went completely gluten-free, and it has solved all of those problems completely.  She's not a diagnosed celiac, but just has a real sensitivity toward gluten.  She's been on a complete GF diet now for about 5 years, and what a difference.  She's now a runner and hikes mountains.

 

 

She struggles with headaches and I really, really want her to go GF but she won't.  She is already a vegetarian and she is mostly dairy free.  Her headaches subsided a good bit when she reduced dairy to hard cheese only.  She needs to be GF because she has Hashimoto's but she simply refuses.  We cook 100% gluten free at home so she is somewhat limited in her gluten consumption haha.

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I tried to group up and reply to most questions/thoughts.  Sorry if I missed anyone. 

She has an appt with a NP at her primary care to run a lab for anemia.   Maybe this NP, being a new person, will have some other labs to add too?  

Her appt with the pediatric cardiologist is on January 10th but I am on a waitlist for cancellations as well.

Thanks for the encouragement, advice, thoughts, and ideas.  

So very helpful ~ as always!

❤️ 

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48 minutes ago, Attolia said:

January 10th, I asked them to put me on a wait list as well. I am hopeful they will call sooner.  She is schedule with a Pediatric Cardiologist.

 

Call periodically even if you are on a list. You might luck into calling at the right time, plus it keeps them from forgetting and shows you are serious about coming in unexpectedly. 

I agree with the ER next time she has an episode. We have waiting lists here but my mom got in the same week after going to the ER, they generally keep a few appointments for this purpose. 

I'm familiar with clinical anxiety and, though presentation can vary, this does not sound like that. There would be no reason for mild exercise to bring on severe anxiety every time. And, if it were anxiety, the doctor should have recommended both a counselor for therapy and a psychiatrist for medication. Those are not symptoms of anxiety that can be managed on one's own. 

Your dd is absolutely right about not seeing that doctor again. They did not do nearly enough to shrug and say, eh, sounds like anxiety. 

While you're setting up with the cardiologist and other specialists, I would also start researching clinics that specialize in diagnosing, like the Mayo Clinic or the Cleveland Clinic. That would be the next step if these specialists don't have answers. Different clinics have different specialties, so it can take a lot of research. My nephew wound up at a Mayo Clinic across the country because they are the ones who specialized in gastro. 

I hope you find a simple, treatable answer! 

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Get a good look at her gums.  If they are pale, chances are she's anemic.  If they are a normal pink color she most likely doesn't have that. Both iron deficiency and b12 deficiency anemia are really common in vegetarians.

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I'll throw in the 'kind of from left field' idea of severe allergies.  Before my allergies were treated, and even now if I hit the jackpot-of-doom and get a couple of allergy triggers coupled with the wrong combination of histamine-stimulating foods, my heart rate would hang in the 120s with no effort at all.  When I was younger, I also had some syncope (fainting) issues...when you coupled the 2, I felt wonky a lot.  My change was so big that I asked my allergist if benedryl could be masking anything else, and he said that if benedryl fixed it, whatever I was experiencing was allergy-related (and now my muscle twitches, heart palpitations, and joint aches are mostly gone).  

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3 hours ago, 5lilpumpkins said:

Ok.

My son was just told this same thing at his last well-check this November. He is very thin and at times will complain of his heart racing seemingly for no reason. Doc said anxiety, encouraged deep breathing exercises, as we have often. He also has within this past year, complained of discomfort in his neck just above the middle of shoulder blades. Doc thinks this is musculature and has given him stretches. I am very eager to hear what you learn.

I am hopeful your dd has a diagnosis soon. Hopefully, it is something easily manageable and not chronic.

Hugs

THIN coming up twice now is ringing bells in my brain.

@Attolia, you might have mentioned your DD's thinness as a contrast to being obese, but if she's super thin, what I'm about to mention to @5lilpumpkins is meant for you too...

You might look at some of the other criteria for Marfan Syndrome. Being very thin is one of more commonly known tip-offs for additional evaluation even though there are more specific criteria. This calculator actually tells you (or a physician) how to look for the other criteria, some of which is stuff you can check at home, even though this is on the part of the site for health professionals. The directions (if you click the + signs) will give you tips about whether you can "help" fingers go into the position being tested, etc. BTW, you can be borderline or even a point or two low on the systemic score (as this is called) and still end up with a confirmed molecular diagnosis (I would count historic stuff on the scoring if it were me--my son had some things going on like ankles rotating inward when he was little that got better on their own). https://www.marfan.org/dx/score

I would also note that dislocated eye lenses are almost always specific to Marfan Syndrome, so if that applies, you need to make a BIG STINK and get some serious genetic testing--all eye doctors should refer to a cardiac geneticist for that feature. ALL OF THEM. A cardiologist can start that rolling, but if you don't have a geneticist on board, and Marfan Syndrome ends up being possible, you will ultimately probably need care at or advice from a bigger (tertiary) hospital, at least periodically. 

1/2 of all people with Marfan Syndrome remain undiagnosed, largely because physicians perceive it as rarer than it is (it's one of the most common rare disorders). School athletic programs are getting better at screening for it, but it's still hit and miss. There is a reason the main support organization for Marfan Syndrome has "Know The Signs" as part of their tagline!!! 

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@Ktgrok

@Pawz4me

@J-rap

NP is super concerned as her finger prick showed 6.8.  I guess that is super low?  She is having some further bloodwork done and is going to mark it as a rush because she wants to try to know by tonight.

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And then I have to ask myself this ... why have Dr’s never tested this? If multiple moms on a homeschool forum have that come to mind, how can a Dr not think to check? 🤦🏻‍♀️

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Wow, you mean for iron levels?  That is really low, and I agree, it's surprising that it never occurred to check that before!!  Mine was down to a 9 once and I did have some of those symptoms, definitely.  I'm glad they're doing a rush on the other blood tests.   Please keep us posted!!

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29 minutes ago, Attolia said:

And then I have to ask myself this ... why have Dr’s never tested this? If multiple moms on a homeschool forum have that come to mind, how can a Dr not think to check? 🤦🏻‍♀️

The more I think about it, too, it really is shocking that they never tested her for that before!!

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54 minutes ago, Attolia said:

@Ktgrok

@Pawz4me

@J-rap

NP is super concerned as her finger prick showed 6.8.  I guess that is super low?  She is having some further bloodwork done and is going to mark it as a rush because she wants to try to know by tonight.

 

Yes, that is very low.  Please keep us updated.  

 

 

28 minutes ago, Attolia said:

And then I have to ask myself this ... why have Dr’s never tested this? If multiple moms on a homeschool forum have that come to mind, how can a Dr not think to check? 🤦🏻‍♀️

 

We have had so many problems with doctors not being thorough.  It's scary and frustrating.  It's like they don't even care.

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5 hours ago, 5lilpumpkins said:

 

Ok.

My son was just told this same thing at his last well-check this November. He is very thin and at times will complain of his heart racing seemingly for no reason. Doc said anxiety, encouraged deep breathing exercises, as we have often. He also has within this past year, complained of discomfort in his neck just above the middle of shoulder blades. Doc thinks this is musculature and has given him stretches. I am very eager to hear what you learn.

I am hopeful your dd has a diagnosis soon. Hopefully, it is something easily manageable and not chronic.

Hugs

Mar fans comes to mind. 

40 minutes ago, Attolia said:

And then I have to ask myself this ... why have Dr’s never tested this? If multiple moms on a homeschool forum have that come to mind, how can a Dr not think to check? 🤦🏻‍♀️

I’m angry on your behalf. Menstruating teen with vegetarian diet and those symptoms, anemia should be front and center on their radar. Dismissing it as anxiety is negligence.

1 hour ago, Attolia said:

@Ktgrok

@Pawz4me

@J-rap

NP is super concerned as her finger prick showed 6.8.  I guess that is super low?  She is having some further bloodwork done and is going to mark it as a rush because she wants to try to know by tonight.

That’s low enough to possibly require a transfusion. They need to check b12 and check for celiac as well. 

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I had similar iron numbers earlier this year and ended up getting two units of blood.  I felt so much better.

Hugs to you and your dd!

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1 hour ago, Attolia said:

@Ktgrok

@Pawz4me

@J-rap

NP is super concerned as her finger prick showed 6.8.  I guess that is super low?  She is having some further bloodwork done and is going to mark it as a rush because she wants to try to know by tonight.

That is transfusion range, fwiw.

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Have them test for celiac if she has been eating at least a slice’s worth of bread daily the next time they pull labs.

Usually people don’t get that anemic without something major medical going on.

If they don’t transfuse, I highly recommend asking about an iron drip or chugging Floradix a few times a day and chasing it with orange juice.

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53 minutes ago, Ktgrok said:

Mar fans comes to mind. 

I’m angry on your behalf. Menstruating teen with vegetarian diet and those symptoms, anemia should be front and center on their radar. Dismissing it as anxiety is negligence.

That’s low enough to possibly require a transfusion. They need to check b12 and check for celiac as well. 

 

6 minutes ago, prairiewindmomma said:

Have them test for celiac if she has been eating at least a slice’s worth of bread daily the next time they pull labs.

Usually people don’t get that anemic without something major medical going on.

If they don’t transfuse, I highly recommend asking about an iron drip or chugging Floradix a few times a day and chasing it with orange juice.

 

 I guess I’ve never thought about that and with our family issues (DS has crohns), the stats are, if I remember, she’s 40% more likely to have crohns or celiacs or Ulcerative colitis than an average person.  She has no tummy problems though? Occasional nausea 

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2 hours ago, Attolia said:

@Ktgrok

@Pawz4me

@J-rap

NP is super concerned as her finger prick showed 6.8.  I guess that is super low?  She is having some further bloodwork done and is going to mark it as a rush because she wants to try to know by tonight.

Oh my. That is VERY low. IIRC the lowest mine ever got was around nine or maybe just a smidge below. And I felt like crap--short of breath from the least little thing and absolutely no energy in general. I hope you get some answers very soon!

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My 1st thought was see a cardiologist as well but now knowing that your son has Crohns I'd add GI to the list - I am sure you are aware the drop in iron levels,Hgb, could be Crohns related as well.Nausea is common with iron def. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774131/

 That would likely explain many of the issues including the fatigue.You mentioned Hashi's and being on  desiccated,is that Nature/Armour?I have been having issues with it as well and am trying yet another brand,so maybe change the med there?Don't forget to mention the medications she is taking currently,advocate for her and as someone upthread said be the Mama bear.Also trust your gut! 

You asked why have Dr’s never tested this- IMHO the pcp's will palm it off to the specialist because its not their expertise. That is unfortunately how it has been.Both my kids have health conditions and in their case their pcp has always palmed them off even for a small thing like a ingrown toe nail.it has been beyond frustrating. Hopefully you will get some answers very soon!GL (((hugs)))

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Sometimes the finger prick is a bit off, I had that happen, but even if it is she’s very anemic. 

 

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Ok final levels are in.

Hemoglobin is a 7

Her blood level ferritin range is supposed to be between a 15-150 and it is a 1.

Her serum iron is supposed to be between 60-180 and it is a 2.

NP and Doctor said they've never seen levels that low and they have no idea how she walked in there. 

They think this is 100% a deficiency.  

Have we told her that she can't be a vegetarian AND avoid most veggies?  Yes, yes we have.

She is now on extremely high doses of iron. They will retest in a month.  If levels don't increase she will see a hematologists.  They still want her to see cardiology though, ugh.

 

ETA - what if the HIVE hadn't suggested this?  How did I miss this?  Would we have seen a cardiologist and still left without iron checked?  Who knows.

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