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Attolia

Update-Leaving school - Health problems, Therapy, and other Ramblings

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Update on Page #2

This has been so emotional.  She has cried so much ya'll.  She doesn't want to leaver her friends, her teachers, the school itself.  She is on target to be valedictorian, holds key leadership positions, and from the exterior is excelling.  This school is her WHOLE world. She has just come to the conclusion that she can't stay with her health.  This is to answer some of the questions about therapy and more details about her health that were requested on the other thread that is now so large I don't want to add to it haha.

Let's talk about therapy first.  DD really liked the therapist.  She seems like she knows what she's saying.  She first talked about anxiety and panic disorders in a way that I thought she was going to go down that path with dd, but then after spending a good bit of time with dd alone, she talked to me alone.  Her conclusion...Your dd is amazing, she is well spoken, intellectual, caring, engaged, she has made this very difficult decision (to leave school) because she is brave enough to do what needs to be done even when it is hard.  BUT, she doesn't feel like dd has deep anxiety or panic issues.  She looked at me and said "you need to push on this more medically".  She has some anxiety but not more than most teens and continuing to see her will be helpful, especially as she makes this hard transition out of school.  So therapy was helpful and yet not all at the same time.  DD is pretty quiet and masquerades really well to the public so maybe the therapist didn't see everything that I see with dd?  She has gained some deep fears for the future.  Being my third teen, I feel like her fears are stronger and becoming more crippling than normal teens but maybe I am wrong?  Maybe the therapist didn't get a true glimpse of this?  or maybe she can see that the anxiety isn't stand alone but driven by something medical? 

So this is what dd is facing medically.  Let me preface this by saying that dd was diagnosed with Hashimoto's later in the year of 7th grade.  She is now a high school junior.  She spent about two years struggling with increasing chest pains, breathing problems, migraines, and exercise intolerance.  We saw several doctors with no answers, things peaked last fall, I came here and expressed my concerns,  and ya'll told me to look into anemia and ta-da, that was it.  I took her to the np at her pediatrician and asked for hemoglobin to be checked and she was severely anemic. Her hemoglobin was a 6.8 and her iron stores were nill.  I had a few other things checked like celiacs.  She is a vegetarian so they narrowed her anemia down to diet based. We never did find a root cause of the anemia.  She has stayed on 900% of her daily iron with a supplement that also includes high doses of vitamin B, etc.  She seemed pretty good.  She would only have occasional headaches, tiredness, bouts of breathing issues.  The issues became more rare.  We could take family hikes again.  We were good. 

Let's note, I was a little concerned because taking 900% of daily iron she has never been able to skip a day without being symptomatic.  To me that seems really odd if her iron stores have built up.

About 4 weeks ago we started all over again.  Keep in mind, this was summer, right?  Not middle of the school year or high stress.  She started having her heart rate bounce everywhere.  She would have episodes where she felt like her heart was fluttery and racing and she couldn't breathe.  Headaches have also gotten worse again.  She has lost exercise tolerance.  I have been using my Apple Watch to test her heart rate during these episodes and I am watching her heart rate bounce (just standing in church) from 90-180-140-44-190 and all over just standing there.  She can't breathe, her throat feels tight, her hands will tremble.  This is what led me to eventually think maybe panic disorder?  But there wasn't a reason to feel panicked at all.  She tried to take a good walk with a friend and came in and slept for 18 hours.  The level of exhaustion she is feeling is extreme.  Especially after she feels these "episodes".  We tried to take a family hike and we weren't over doing it, not straight up a mountain, a pretty moderate hike and dd just couldn't to it.  We got about halfway through and she had to keep sitting down and her heart rate was zipping at 190ish the whole time.  Her head was killing her and she could hardly breathe.  She has also gained significant weight since January.  She was 107 in December and now she is 135.  The other symptoms she has been dealing with is she is freezing in the evenings.  Like it is 1,000 degrees outside here and she is freezing cold.  She has also had a sudden onset of really red stretch marks all over her thighs and stomach.  Her skin seems thin.  She is also flushed a lot.  These two things could be from the high doses of iron?

What have we done?

My initial thought was that she wasn't really absorbing iron.  We took her to a pediatric hematologist with St Judes who took a lot of time with DD and pulled a ton of labs. She said that dd's labs were gorgeous, all vitamin levels were beautiful, stores are high, no sign of pernicious anemia, etc. She wanted DD to see cardiology.  Cardiology was pretty thorough with an ekg and a detailed ultrasound.  They said that everything looks good.  She actually wore a 24 hour heart rate monitor but of course she was episode free during those 24 hours.  Cardiology wants a full Endo workup and then will do a 30 day heart rate monitor if necessary.  I will note that her heart rate range for the 24 hours was 55-190 and she didn't run or do anything crazy during that time. She had a lot of school so she was sitting down most of the time. 

She went up a little on thyroid meds end of May.  I just had her thyroid labs pulled again to make sure.  Her Tsh is slightly low but all other numbers in line.  Like T3 and T4, etc.  I wouldn't think that a slightly low TSH could cause this, especially if she is not feeling hyperthyroid overall and she is gaining weight not losing.  The time she was accidentally overmedicated she was losing weight, couldn't sleep, felt hot, etc. I also had insulin checked with her thyroid and it is good.

This week she completed a 24 hour cortisol saliva test.  We will get those results back in about 7 days.  

I have an appointment scheduled for next week with the hormone doctor that recently discovered older dd's pcos and horrible hormonal imbalances. Later in September (when it is the right time of her cycle) she will have a full hormone panel done to test her female hormones.  

This is a lot, I know.  So if you have read this far then you deserve a prize.

Thank ya'll for all of your help thus far.  For your wisdom, insight, and encouragement. 

 

 

 

 

Edited by Attolia
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So, as soon as I read about the stretch marks, I thought Bartonella. Have you had her tested for Lyme & Bartonella? Red/purple stretch marks not associated with growth spurt skin stretching really points to Bartonella.

Has she had any toxic mold exposure? There are now some excellent urine mycotoxin tests that could rule this out as a cause, even if you think the answer is no.

My dd's 3 years of health struggles sound a lot like your dds. She's had all these symptoms, too, and a clean bill of health from psych. She has chronically low ferritin despite supplementation, and celiac and dairy intolerance that makes it hard to absorb minerals despite a really good diet. Chronic inflammation, joint pain, brain fog and fatigue. School has been basically un-doable for the past two years. 

We have finally recognized that her symptoms and the difficulty in getting well is due to the combination of Lyme/Bartonella and mold mycotoxins.

Good luck. I'm happy to talk more if any of this resonates with you.

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 I just want to say hugs to you and your dd. What a tough situation. You are a good parent, not blowing everything off and telling her to suck it up and tough it out. That's good she has your support through this. She sounds like a fantastic young woman. 

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Hugs to all of you!

Fwiw, my next step would be to try a strict GFCF diet and to try to get in with rheumatology/immunology. A good diagnostic rheumatologist deals in a lot of weird and the issues you describe could fit into that world.....

Sorry you are dealing with this!

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1 minute ago, prairiewindmomma said:

Hugs to all of you!

Fwiw, my next step would be to try a strict GFCF diet and to try to get in with rheumatology/immunology. A good diagnostic rheumatologist deals in a lot of weird and the issues you describe could fit into that world.....

Sorry you are dealing with this!

 

 

Thank you.  We are a mostly a gluten free, dairy free family but she won't go gluten free.  She is dairy free.  I know GF but why can't I think of what CF is?

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4 minutes ago, prairiewindmomma said:

Has she had a celiac panel run? Totally assuming yes, but wanted to double check.

 

Yes, with the anemia and a brother with crohns I pushed that hard.  It was normal.

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1 hour ago, Attolia said:

She is a vegetarian so they narrowed her anemia down to diet based. We never did find a root cause of the anemia.  

Is the root cause of her anemia tied to the fact that she is a vegetarian? It can be very tricky to get iron that adolescent females need, especially when she is a vegetarian, even through supplements. In the past, red meat has been the go-to solution for many doctors. I know when I am anemic, i feel much better when eating red meat -- much, much better even than consuming a large dose of iron supplements. I am sure there is a plant-based solution, but the vegetarian angle could make it much trickier.

I am sorry that she is going through this.

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She needs to try 100% GFCF and wheat and soy and corn and peanut free for 90 days .  If that sounds impossible say 30 days to start. And extend if possible (gluten effects last up to 3 months and amount to cause problems can be milligram range or less. So “mostly” gluten free is meaningless in terms of safety. Sort of like only infrequently jumping off Golden Gate Bridge.  99% free is zero percent protected.   But also other aspects of wheat like lectins can trigger autoimmunity reactions.) Eggs and nightshades free too for awhile if that can be managed.

Check environments she is in for toxic exposure, outgassing plastics, formaldehyde, fragrance products etc; and for EMFs; molds; etc

get her tested for Lyme and other tick borne illnesses. 

 

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Btw Heart issues in church is a problem I get due to fragrance products, dry cleaned clothes etc that people tend to wear to church. 

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11 minutes ago, Pen said:

Btw Heart issues in church is a problem I get due to fragrance products, dry cleaned clothes etc that people tend to wear to church. 

 

I mean, possibly, but we go to a super dressed down church.  Like yoga pants, jeans, messy buns type of dressed down.  I am pretty sensitive to fragrance but I never smell anything weird there.

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22 minutes ago, Pen said:

She needs to try 100% GFCF and wheat and soy and corn and peanut free for 90 days .  If that sounds impossible say 30 days to start. And extend if possible (gluten effects last up to 3 months and amount to cause problems can be milligram range or less. So “mostly” gluten free is meaningless in terms of safety. Sort of like only infrequently jumping off Golden Gate Bridge.  99% free is zero percent protected.   But also other aspects of wheat like lectins can trigger autoimmunity reactions.) Eggs and nightshades free too for awhile if that can be managed.

Check environments she is in for toxic exposure, outgassing plastics, formaldehyde, fragrance products etc; and for EMFs; molds; etc

get her tested for Lyme and other tick borne illnesses. 

 

 

 

Yes, I have tried to convince her to be GF.  Being a vegetarian and dairy free, she just already feels so limited that she won't commit to gluten free.  She doesn't eat it often so she is convinced that it isn't a problem. I have used similar analogies to what you have used but she is just so convinced it isn't a problem.  She'll come around eventually.  She refused to go dairy free forever too but has felt so much better dairy free that it is worth it for her.

 

Edited by Attolia

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praying for you. 

I have a friend that was diagnosed with Graves Disease and then following treatment developed Hashimoto's. I wonder if Graves could be a player here? I would definitely at least message her endocrinologist about the issues you are seeing--I would think they would want to revisit her thyroid.  Symptoms of Graves' disease fit:

What are the symptoms of Graves’ disease?

You may have common symptoms of hyperthyroidism such as

  • fast and irregular heartbeat
  • frequent bowel movements or diarrhea
  • goiter
  • heat intolerance
  • nervousness or irritability
  • tiredness or muscle weakness
  • trembling hands
  • trouble sleeping
  • weight loss
Edited by cintinative
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6 minutes ago, Attolia said:

 

 

Yes, I have tried to convince her to be GF.  Being a vegetarian and dairy free, she just already feels so limited that she won't commit to gluten free.  She doesn't eat it often so she is convinced that it isn't a problem. I have used similar analogies to what you have used but she is just so convinced it isn't a problem.  She'll come around eventually.  She refused to go dairy free forever too but has felt so much dairy free that it is worth it for her.

 

 

She may need to eat a little meat and or fish but no wheat or gluten for at least a month as a trial to see if there’s any improvement.

the iron issue suggests she isn’t absorbing well, and gut/food issues may well be related 

Or agree to try that if she doesn’t test positive for a tick borne illness

but both could be triggering autoimmunity as could environmental toxins etc

getting the load way down could help

 

Edited by Pen
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I suggest you have her read the books I recommended in the other thread

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2 hours ago, Attolia said:

I am watching her heart rate bounce (just standing in church) from 90-180-140-44-190 and all over just standing there.  She can't breathe, her throat feels tight, her hands will tremble.  This is what led me to eventually think maybe panic disorder? But there wasn't a reason to feel panicked at all. 

Is she just standing at church or is she singing also? Anemia can cause hyperventilation which can feel like what you are describing -- light headedness, shortness of breath, dizziness, and rapid heart rate. This can be much worsened by over-breathing which occurs when singing.

Panic/anxiety attacks are often caused not by panic or anxiety but by physical issues. 

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More info to consider:

"Hyperventilation is a medical term that refers to overbreathing. In this case, ventilation through the lungs exceeds the metabolic demand on the body. Hyperventilation is normal after strenuous exercise. Many cases of acute, or sudden, hyperventilation come on when experiencing panic, anxiety, or emotional condition. Hyperventilation, can also be caused by a range of medical conditions, including heart attack, anemia, congestive heart failure, fever, sepsis, stroke, and chronic obstructive pulmonary disease (COPD), among others. 

Symptoms and signs of hyperventilation include dizziness and lightheadedness. Other associated symptoms can include a sense of unsteadiness, chest pain or discomfort, rapid heart rate, and a tingling sensation around the mouth and in the fingertips or toes. It is also common to experience shortness of breath, or the feeling that you cannot take in enough air."

from: https://www.emedicinehealth.com/hyperventilation/symptom.htm

The bolded sounds similar to some of what you have said.

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17 minutes ago, moonflower said:

If she was tested for celiac and cleared, what is the concern about gluten?

 

She has Hashimoto's and gluten can stoke that fire.  I know that older dd and I (both hashimotos too) can't have gluten.  It makes us feel awful.  

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13 minutes ago, Skippy said:

Is she just standing at church or is she singing also? Anemia can cause hyperventilation which can feel like what you are describing -- light headedness, shortness of breath, dizziness, and rapid heart rate. This can be much worsened by over-breathing which occurs when singing.

Panic/anxiety attacks are often caused not by panic or anxiety but by physical issues. 

 

She was severely anemic but then treated and her labs are great.  

Those days?  Just standing because she was short of breath she didn't sing.

Edited by Attolia

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And the standard gluten panel is really limited - they only test a few of the many possible forms of the protein that can trigger gut reactions. I have an atypical presentation of celiac (I get DH skin rash more than gut symptoms) and it wasn't identified till I had a skin biopsy. The normal blood-tests were normal. So were my dds. But getting of gluten has changed both of our lives.

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30 minutes ago, Pen said:

Btw Heart issues in church is a problem I get due to fragrance products, dry cleaned clothes etc that people tend to wear to church. 

 

17 minutes ago, Attolia said:

 

I mean, possibly, but we go to a super dressed down church.  Like yoga pants, jeans, messy buns type of dressed down.  I am pretty sensitive to fragrance but I never smell anything weird there.

 

Mold or dust in a building can also trigger a response.

2 hours ago, Attolia said:

 I have been using my Apple Watch to test her heart rate during these episodes and I am watching her heart rate bounce (just standing in church) from 90-180-140-44-190 and all over just standing there.  She can't breathe, her throat feels tight, her hands will tremble.  This is what led me to eventually think maybe panic disorder?  But there wasn't a reason to feel panicked at all.  

 

Does your daughter has asthma? What you described would be similar to an asthma attack for me. I have a rescue inhaler with me for that reason. Asthma trigger leads to hyperventilating, cold hands, body shakes for me. My heart rate would be bouncing between 60 and 110. It can look like a panic attack except the root cause for me would be asthma.

DS14 who didn’t quite understand my sensitivity to airborne dust was coughing badly when helping me recently with area cleaning at his favorite spot. He was shocked that airborne dust could trigger a coughing fit. DS13 was surprised too. I told my kids to leave dust bunnies alone or use a wet wipe/napkin/rag but DS14 forgot and used a dry napkin. 

Floradix liquid is useful for me as a vegetarian iron supplement but only as maintenance. Lamb meat has been the only thing other than beef that has successfully cause my haemoglobin level to climb towards normal range instead of stagnating. 

I took Florastor (probiotics) to help my digestive system after my surgery and it seems to help too. 

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28 minutes ago, Attolia said:

 

She has Hashimoto's and gluten can stoke that fire.  I know that older dd and I (both hashimotos too) can't have gluten.  It makes us feel awful.  

 

More than that—

gluten or other adverse proteins etc in wheat (and other foods too) can stoke additional autoimmune syndromes and can lead to damage in other organs / glands/ systems besides thyroid 

 

she isn not showing damage that a cardiologist can see. Yet.  By time a cardiologist can pick up heart damage it is often too late to reverse it. 

*Now* is the time—not when she has far more irreversible damage 

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34 minutes ago, Attolia said:

 

She has Hashimoto's and gluten can stoke that fire.  I know that older dd and I (both hashimotos too) can't have gluten.  It makes us feel awful.  

Yes this is what my friend's doctor told her about her 12 year old who has Hashimotos.  Her body mistakes gluten for.....something it is attacking.  Sorry I can't remember the details but my friend was convinced by the doctor's explanation.

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Understand, that I reset my password and logged in after several years of lurking after a bad experience on this board, because I felt so strongly that I needed to pass along this information. 

Please pursue the endocrinologist appointment. What you are describing reminds me a lot of my mother’s odyssey with Cushing’s syndrome, which they believe was started by a thyroid tumor. 

It’s commonly misdiagnosed. 

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How is her oxygen saturation? Especially during episodes? Maybe a pulmonary specialist is in order if all else comes back clear. I'm glad you are checking cortisol, Addisons disease and Cushings come to mind, flips sides of the same coin. How is her blood pressure? Low blood pressure can trigger high heart rate and similar symptoms. Pots would be linked to that. 

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1 hour ago, Chrysalis Academy said:

And the standard gluten panel is really limited - they only test a few of the many possible forms of the protein that can trigger gut reactions. I have an atypical presentation of celiac (I get DH skin rash more than gut symptoms) and it wasn't identified till I had a skin biopsy. The normal blood-tests were normal. So were my dds. But getting of gluten has changed both of our lives.

Dd, who has had very similar symptoms to yours, was finally diagnosed with celiac after 4 years of searching for answers and going to cardiologist after cardiologist.  Her celiac test was actually a very low positive and even that after loading up on gluten before the test but the biopsy was positive for celiac.  If someone is eating very little gluten, the ttg test is meaningless. 

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Have you considered POTS (Postural Orthostatic Tachycardia Syndrome)? My daughter has many of the same issues as yours and was diagnosed with this several years ago. You can google the term "poor man's tilt table". It's a test you or your doctor can do. You have her lie down for a certain period of time and take her heart rate. Then she'll sit up and repeat and then stand and repeat. If there is a 30 or 40 beat difference it could be POTS. My dd also has hypermobile Ehlers-Danlos Syndrome (hEDS). This affects the connective tissue in the body. It has resulted in many sudden stretch marks in my daughter and a lot of joint issues/pain. Many people with POTS have hEDS also.

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Have you consulted with your son's GI doctor? Because the more I think about it, the more her "labs are excellent" seems meaningless, given she's on 900 times the normal dose! If she needs that much, something is wrong absorption wise. 

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8 minutes ago, Ktgrok said:

How is her oxygen saturation? Especially during episodes? Maybe a pulmonary specialist is in order if all else comes back clear. I'm glad you are checking cortisol, Addisons disease and Cushings come to mind, flips sides of the same coin. How is her blood pressure? Low blood pressure can trigger high heart rate and similar symptoms. Pots would be linked to that. 

 

i was just thinking the same--check her adrenal gland for growths. An excess of adrenaline can cause some of those symptoms. 

Honestly, I would start with her thyroid and adrenal glands before I started messing with her diet.  I have a Celiac kid so I don't say that lightly. It's just that, if there is a growth on her glands, you want to deal with that now.  Make sure that is not behind the poor iron absorption.  I would triage the most pressing issues and if nothing comes up via testing, then consider endoscopy for Celiac and dietary changes. Clearly, just my opinion and I am sure others will disagree.  

Edited by cintinative
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4 minutes ago, cintinative said:

 

i was just thinking the same--check her adrenal gland for growths. An excess of adrenaline can cause some of those symptoms. 

Honestly, I would start with her thyroid and adrenal glands before I started messing with her diet.  I have a Celiac kid so I don't say that lightly. It's just that, if there is a growth on her glands, you want to deal with that now.  Make sure that is not behind the poor iron absorption.  I would triage the most pressing issues and if nothing comes up via testing, then consider endoscopy for Celiac and dietary changes. Clearly, just my opinion and I am sure others will disagree.  

I agree. And I would NOT change diet until after a work up by a gastroenterologist anyway. Changing diet may mask problems. 

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1 hour ago, Chrysalis Academy said:

And the standard gluten panel is really limited - they only test a few of the many possible forms of the protein that can trigger gut reactions. I have an atypical presentation of celiac (I get DH skin rash more than gut symptoms) and it wasn't identified till I had a skin biopsy. The normal blood-tests were normal. So were my dds. But getting of gluten has changed both of our lives.

 

43 minutes ago, Pen said:

 

More than that—

gluten or other adverse proteins etc in wheat (and other foods too) can stoke additional autoimmune syndromes and can lead to damage in other organs / glands/ systems besides thyroid 

 

she isn not showing damage that a cardiologist can see. Yet.  By time a cardiologist can pick up heart damage it is often too late to reverse it. 

*Now* is the time—not when she has far more irreversible damage 

 

Yes and I am trying haha.  She is almost 17, I can't dictate all the goes in her mouth, but I have been trying to get her to go GF for a while.  Not being in school might help because she won't have stuff there to tempt her.

 

1 hour ago, Arcadia said:

 

Does your daughter has asthma? What you described would be similar to an asthma attack for me. I have a rescue inhaler with me for that reason. Asthma trigger leads to hyperventilating, cold hands, body shakes for me. My heart rate would be bouncing between 60 and 110. It can look like a panic attack except the root cause for me would be asthma.

DS14 who didn’t quite understand my sensitivity to airborne dust was coughing badly when helping me recently with area cleaning at his favorite spot. He was shocked that airborne dust could trigger a coughing fit. DS13 was surprised too. I told my kids to leave dust bunnies alone or use a wet wipe/napkin/rag but DS14 forgot and used a dry napkin. 

Floradix liquid is useful for me as a vegetarian iron supplement but only as maintenance. Lamb meat has been the only thing other than beef that has successfully cause my haemoglobin level to climb towards normal range instead of stagnating. 

I took Florastor (probiotics) to help my digestive system after my surgery and it seems to help too. 

 

Not that I know of?  She doesn't have coughing problems.  I have no idea. I thought about looking into pulmonology if all else comes back empty.

 

13 minutes ago, lauraw4321 said:

Understand, that I reset my password and logged in after several years of lurking after a bad experience on this board, because I felt so strongly that I needed to pass along this information. 

Please pursue the endocrinologist appointment. What you are describing reminds me a lot of my mother’s odyssey with Cushing’s syndrome, which they believe was started by a thyroid tumor. 

It’s commonly misdiagnosed. 

 

So, cushings has been a strong thought in my mind all along tbh.  She did the cortisol test this week (the 24 hour saliva one) and we will get results in the next week or so.  Thanks for login through the effort to share this with me though.  It confirms some of my suspicions.

7 minutes ago, Ktgrok said:

How is her oxygen saturation? Especially during episodes? Maybe a pulmonary specialist is in order if all else comes back clear. I'm glad you are checking cortisol, Addisons disease and Cushings come to mind, flips sides of the same coin. How is her blood pressure? Low blood pressure can trigger high heart rate and similar symptoms. Pots would be linked to that. 

 

I am really not sure if oxygen has been tested but surely it was tested along the way somewhere right?  Pulmonary specialist is on my list if what we have going on now reveals nothing.

No idea how her blood pressure is.  I mean, they take it at the dr I think?  POTS is what the cardiologist wants me to explore more.  She said she wouldn't diagnose it per se because there is no reason to.

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11 minutes ago, billswife said:

Have you considered POTS (Postural Orthostatic Tachycardia Syndrome)? My daughter has many of the same issues as yours and was diagnosed with this several years ago. You can google the term "poor man's tilt table". It's a test you or your doctor can do. You have her lie down for a certain period of time and take her heart rate. Then she'll sit up and repeat and then stand and repeat. If there is a 30 or 40 beat difference it could be POTS. My dd also has hypermobile Ehlers-Danlos Syndrome (hEDS). This affects the connective tissue in the body. It has resulted in many sudden stretch marks in my daughter and a lot of joint issues/pain. Many people with POTS have hEDS also.

 

POTS is what the cardiologist wants me to explore more.  She said she wouldn't diagnose it per se because there is no reason to.  She says they can't do anything about it anyway.  I have looked into it some.  It isn't exercise induced though right?  I will look into Ehlers-danlos.  And I will try the test you speak of at home.

 
2 minutes ago, Ktgrok said:

I agree. And I would NOT change diet until after a work up by a gastroenterologist anyway. Changing diet may mask problems. 

 

True, good thoughts.

9 minutes ago, Ktgrok said:

Have you consulted with your son's GI doctor? Because the more I think about it, the more her "labs are excellent" seems meaningless, given she's on 900 times the normal dose! If she needs that much, something is wrong absorption wise. 

 

I have not gone the GI route yet.  She has no stomach problems or diarrhea,  I am not unwilling to explore that but it didn't seem like a primary thought.  

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1 hour ago, Chrysalis Academy said:

And the standard gluten panel is really limited - they only test a few of the many possible forms of the protein that can trigger gut reactions. I have an atypical presentation of celiac (I get DH skin rash more than gut symptoms) and it wasn't identified till I had a skin biopsy. The normal blood-tests were normal. So were my dds. But getting of gluten has changed both of our lives.

 

Similar story with extraintestinal symptoms. Blood testing indicated no problem with gluten, but Igg stool levels indicated a severe level of reaction. Eliminating gluten made a huge difference. 

Attolia, have you ruled out Cushing’s Syndrome? That comes with stretch marks and weight gain, and is associated with high cortisol levels like you might find in someone with anxiety. Did she take steroids for anything in the somewhat recent past? (I haven’t read all of your other thread.)

https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

 

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10 minutes ago, Attolia said:

I am really not sure if oxygen has been tested but surely it was tested along the way somewhere right?  

No idea how her blood pressure is.  I mean, they take it at the dr I think?  

 

I have oxygen saturation tested only for my oncologist visits and before each of my IV treatments. Sometimes the nurse didn’t take my oxygen saturation readings so it isn’t even a compulsory (check the box) procedure for them. 

My blood pressure is on the lower side and I need the smallest cuff.  So it’s obvious to me when the nurse did not take my blood pressure. I didn’t have my blood pressure taken for mammograms and echocardiograms. I did have that taken at every doctor’s visit (GP, oncologist) else their computer system would prompt the nurse for missing data. I found it funny that they didn’t take a blood pressure reading before doing the echocardiogram but I have to see my oncologist every three weeks so it didn’t bother me. 

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40 minutes ago, billswife said:

Have you considered POTS (Postural Orthostatic Tachycardia Syndrome)? My daughter has many of the same issues as yours and was diagnosed with this several years ago. You can google the term "poor man's tilt table". It's a test you or your doctor can do. You have her lie down for a certain period of time and take her heart rate. Then she'll sit up and repeat and then stand and repeat. If there is a 30 or 40 beat difference it could be POTS. My dd also has hypermobile Ehlers-Danlos Syndrome (hEDS). This affects the connective tissue in the body. It has resulted in many sudden stretch marks in my daughter and a lot of joint issues/pain. Many people with POTS have hEDS also.

 

29 minutes ago, Attolia said:

Yes and I am trying haha.  She is almost 17, I can't dictate all the goes in her mouth, but I have been trying to get her to go GF for a while.  Not being in school might help because she won't have stuff there to tempt her.

No idea how her blood pressure is.  I mean, they take it at the dr I think?  POTS is what the cardiologist wants me to explore more.  She said she wouldn't diagnose it per se because there is no reason to.

 

Re: a kid unwilling to go off gluten - I totally get it. Older dd - the sick one - is compliant because she can see how much better her gut symptoms are when she is off gluten (going off gluten hasn't gotten rid of the other symptoms, though). Dd13 refuses to go off gluten, even though I'm sure she is intolerant too based on her symptoms. Because she doesn't have Lyme/Bart, the gut symptoms alone aren't bad enough to motivate her to quit. At some point you can't control their choices, just try to convince them to try it.

Re: POTS - a POTS diagnosis isn't that helpful, IMHO. Dd got diagnosed with POTS before anything else, and the prescription was to drink lots of water, take salt pills, and exercise, none of which helped. POTS is a syndrome, not a disease, so even if a cardiologist says you have POTS you still have to search for the underlying cause. Which can be an infection, a biotoxin, autoimmunity, etc.  It's just a label for a subset of the symptoms, really.

Dds gut symptoms were improved by diet, and the POTS symptoms have mostly cleared up too.  The fatigue, brain fog, and joint pain have been resistant to improvement.

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49 minutes ago, Attolia said:

 

 

Yes and I am trying haha.  She is almost 17, I can't dictate all the goes in her mouth, but I have been trying to get her to go GF for a while.  Not being in school might help because she won't have stuff there to tempt her.

 

I get that.  

Could you at least not contribute to it? by not buying and stocking any of the 7 top autoimmune trigger foods (could possibly help multiple family members)? (Add sugar and processed to the trigger foods list)?

The author of Autoimmune Fix was apparently an organic artisanal baker prior to coming to realize that even supposedly healthy organic whole grain, good, staff of life type wheat bread was making him sick.

 

 

 

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5 hours ago, Attolia said:

she doesn't feel like dd has deep anxiety or panic issues.

So there is mild anxiety and medications for mild anxiety. We were talking genetic in your other thread. There's a TPH2 defect that affects conversion of tryptophan to 5HTP. Causes anxiety. Easy check when you run the genetics.

5 hours ago, Attolia said:

She is a vegetarian

So if they're wanting her off gluten for the autoimmune and she's also avoiding other foods, that might make it seem harder. If you could expand her diet out with a good nutritionist, then remove the gluten.

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1 hour ago, Attolia said:

 

POTS is what the cardiologist wants me to explore more.  She said she wouldn't diagnose it per se because there is no reason to.  She says they can't do anything about it anyway.  I have looked into it some.  It isn't exercise induced though right?  I will look into Ehlers-danlos.  And I will try the test you speak of at home.

 
  •  

 

True, good thoughts.

 

I have not gone the GI route yet.  She has no stomach problems or diarrhea,  I am not unwilling to explore that but it didn't seem like a primary thought.  

She does have GI symptoms in the sense that she is not correctly absorbing nutrients, right? I mean, it shouldn't take 900 times the normal does to maintain a normal level of iron. So her absorption is off somewhere. You can absolutely have silent GI issues. Malabsorption seems to be an issue, and weight gain can go with that as well as weight loss. I'd want to know why she has to take SO much iron. 

And again, i would NOT go off gluten until after that work up and with the blessing of a good GI doctor. If anything, I'd be PUSHING gluten until that is done. If she was only eating minimal gluten before her blood test it won't be accurate anyway, so that wouldn't be rule out yet. You need the equivalent of a few slices of bread a day for weeks and weeks before testing, and some doctors feel you need gluten at every meal for a few months before testing to get a truly accurate result. If she was not eating gluten at home due to brother's celiac, just eating it at school once a day, the test may not have been accurate. Given brother's history, the anemia, the apparent issues with absorption, I'd have her have an appointment with the GI doctor. 

Edited by Ktgrok
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The 900% above daily value for Iron sounds extreme. I have blood test every three weeks and the numbers for haemoglobin are generally climbing even though I do not remember to take my iron supplement (167% DV, 30mg) or lamb daily. Below are the haemoglobin results I have from my CBC.

6/24/19   8.0 g/dL

7/11/19     9.8 g/dL

7/19/19     9.2 g/dL

7/24/19   10.8 g/dL

8/14/19    10.5 g/dL

9/4/19     11.1 g/dL

STANDARD RANGE  11.7 to 15.7 g/dL

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3 hours ago, Seasider too said:

 

Similar story with extraintestinal symptoms. Blood testing indicated no problem with gluten, but Igg stool levels indicated a severe level of reaction. Eliminating gluten made a huge difference. 

Attolia, have you ruled out Cushing’s Syndrome? That comes with stretch marks and weight gain, and is associated with high cortisol levels like you might find in someone with anxiety. Did she take steroids for anything in the somewhat recent past? (I haven’t read all of your other thread.)

https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

 

 

We are waiting on the 24 hour cortisol saliva tests.  Hopefully we will hear this week. Tbh, It is the test that I am most curious to see the results of,

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I’m not sure if this book The Blood Sugar Solution 10-Day Detox Diet: Activate Your Body's Natural Ability to Burn Fat and Lose Weight Fast https://www.amazon.com/dp/B00HSQVGI4/ref=cm_sw_r_cp_api_i_D1cFDbJS41XTH

could help her. 

 it’s more focused on weight issues than autoimmunity   But the things to do and avoid have some overlap and a 10 day goal may seem more doable to her than 30 days.  And maybe if she is feeling even a little better she’d be willing to go longer on an autoimmune reducing nutrition program 

(it allows soy tofu while that is not allowed on some anti autoimmunity plans)

Edited by Pen
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5 hours ago, Chrysalis Academy said:

The fatigue, brain fog, and joint pain have been resistant to improvement.

 

Has she gotten to where she can eat more things, take supplements, to try to start repair and rebuilding? 

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2 hours ago, Pen said:

 

 

Has she gotten to where she can eat more things, take supplements, to try to start repair and rebuilding? 

Yes, she has. She has improved somewhat. But she's still exposed to the mold, so we're kind of Red-Queening it, running as fast as we can to stay in the same place, using binders and glutathione and such. Good news is, escrow closes on this house on 9/24. Once we find a new place and get moved, we can start the serious binding, detoxing, and (hopefully) recovery.  Thanks for asking.

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My guess would be she has some kind of endocrinology problem, celiac disease and/or possibly Ehlers Danlos Syndrome.

That is an awful lot of iron she is taking. Some of her symptoms might be related to that. I think you want to find out why she’s having trouble absorbing iron. Possibly not absorbing it in her intestine. Something wonky is going on.

It is good you are working to find exactly what’s going on. I hope you find an answer soon and get a better treatment plan.

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18 minutes ago, BeachGal said:

That is an awful lot of iron she is taking. Some of her symptoms might be related to that. 

 

My oncologist advised that I do not take iron supplements long term. Actually once my haemoglobin levels hit above 10 g/dL, my oncologist prefers that I rely only on food sources for iron. 

“Have your health care provider tell you how many pills you should take each day and when you should take them. Taking more iron than your body needs can cause serious medical problems.

Blood counts return to normal after 2 months of iron therapy for most people. You should continue taking supplements for another 6 to 12 months to build up the body's iron stores in the bone marrow.” https://medlineplus.gov/ency/article/007478.htm

FYI Two common iron supplements may cause cancer https://www.medicalnewstoday.com/articles/amp/321515

“The new research comes from the Chalmers University of Technology in Gothenburg, Sweden, in collaboration with the United Kingdom Medical Research Council and the University of Cambridge, also in the U.K.

The scientists — led by Nathalie Scheers, an assistant professor at the Chalmers University of Technology — explain that their research was prompted by older studies that showed that two compounds, called ferric citrate and ferric EDTA, promote tumors in mice.

But, these previous studies did not reveal "whether all forms of 'bioavailable' iron exacerbate gut cancer cells," or whether different forms of iron display the same mechanism.

So, in the new study, Scheers and colleagues examined the effect of these two compounds on the growth of human colorectal cancer cells. Additionally, they tested another widely available iron compound called ferrous sulfate.

In their experiment, the researchers used levels of the compounds that might realistically be found in the gastrointestinal tract after taking the supplement.

...

Scheers comments on the findings, saying, "We can conclude that ferric citrate and ferric EDTA might be carcinogenic, as they both increase the formation of amphiregulin, a known cancer marker most often associated with long-term cancer with poor prognosis."

However, Scheers adds, "we must bear in mind that the study was done on human cancer cells cultured in the laboratory, since it would be unethical to do it in humans."

"But, the possible mechanisms and effects observed still call for caution. They must be further investigated."

...

The authors caution that consumers may find it difficult to discern between iron supplements because "[m]any stores and suppliers don't actually state what kind of iron compound is present — even in pharmacies."

"Usually, it just says 'iron' or 'iron mineral,' which is problematic for consumers," Scheers adds. "Most importantly, researchers and authorities need to start to distinguish between this form of iron and that form of iron. We need to consider that different forms can have different biological effects."

"At the moment, people should still follow recommended medical advice. As a researcher, I cannot recommend anything — that advice needs to come from the authorities."

Nathalie Scheers

"But, speaking personally, if I needed an iron supplement, I would try to avoid ferric citrate," she concludes.”

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Yeah, all that iron can’t be good but what a conundrum. I am thinking more and more that this may be celiac disease.

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13 hours ago, Pen said:

I’m not sure if this book The Blood Sugar Solution 10-Day Detox Diet: Activate Your Body's Natural Ability to Burn Fat and Lose Weight Fast https://www.amazon.com/dp/B00HSQVGI4/ref=cm_sw_r_cp_api_i_D1cFDbJS41XTH

could help her. 

 it’s more focused on weight issues than autoimmunity   But the things to do and avoid have some overlap and a 10 day goal may seem more doable to her than 30 days.  And maybe if she is feeling even a little better she’d be willing to go longer on an autoimmune reducing nutrition program 

(it allows soy tofu while that is not allowed on some anti autoimmunity plans)

 

Btw- I deliberately linked the Audible version.  It’s read by the author and I think he does a good job.  

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