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

[ktgrok]

23 minutes ago, Attolia said:

UPDATE

DD is struggling a ton still. So exhausted, still having chest pains, racing heart, exercise intolerance, etc., etc. My doctor (hormone specialist) is fantastic at figuring stuff out so I took DD to see her today.  I had already messaged her ahead of time so she is also the one who ordered the cortisol test (not back yet) but I hadn't taken dd in and explained it all to her yet.  She was a little upset about a few things...

1).  She is strongly suspicious of an adrenal or pituitary tumor.  She says that in adult cardiology this would have been standard to test and can't understand why this wasn't tested. The Pediatric cardiologist did have this in mind but wanted to see an endocrinologist run the tests.  My doctor's point was "it is just a lab test and you needed answers". Now DD has a nice little hat to collect all of her urine for 24 hours (beginning tomorrow) to test for an adrenal tumor. The cortisol test will be helpful with this as well.  

2) she completely disagrees with hematology (I took her a copy of the hematology labs).  She says that if dd has been taking 450-900% of her daily iron every day since November, it isn't ok that her iron saturation is still below normal.  And her stores are up but still not what you would expect with those amounts of iron.  She feels like there could be something underlying going on - whether it is all tied together we don't know yet- and the high doses of iron are just masking the issues.

She is adamant about finding this out.  We have a bunch of tests with her next week.  If those come back normal then she says we'll keep looking.  

I guess I am just thankful to have someone actually listening. 

I'm SO glad they are making sense and listening! And yes it is only logical that so much iron should have her way high, not low or normal! 

Seriously, the idea that she might have an adrenal tumor and so many doctors said she was just having anxiety - ugh!

[LarlaB]

I JUST saw that you asked me about POTS another thread and I came and read this one.   I'm so sorry I didn't reply sooner.  ABSOLUTELY  it sounds like POTS!  Especially with onset of issues starting after concussion.  But also its very common in younger girls. 

It sounds exactly exactly exactly like POTS.  The postural varying heart rate is the dead giveaway..... In my limited research, there are not many conditions that will consistently give a positive to the sit stand test, but can run wild in multiple body systems as well.   And there is can be an autoimmune component as well- meaning it tends to run along side other issues....Celiac, Ehlers, MASTC and on and on.   Google Poor Mans Tilt Test....essentially she sits calmly for 10 minutes and you take her pulse or use heart rate monitor, then she stands up.  Simply stand.  Don't walk, sway, shift or move.  Just stand.  If its a heart rate monitor, you should see a change within 15 seconds...if its POTS the heart rate will keep increasing.  The standard is for her age, if her heart rate increases 40 beats from sitting to standing OR goes over 120, its POTS.  Given her other issues, its as simple as that. 

Her complaints of tight chest, exercise intolerance, exhaustion along with the high heart rate is classic POTS.  The fatigue especially can be brutal. 

A cardiologist who is familiar with POTS can diagnose (or electrophysiologist, or neurologist).  The "tilt table test" is the gold standard and is a very very simple diagnostic, but a lot of Drs are not familiar or have never seen cases in person.    So be prepared when looking for a cardiologist to make sure they are familiar. You can also do a lot of legwork online but its takes time.   

Interestingly, the cortisol test could be very helpful....one way they look for the subtype of POTS (adrenonergic I think) is to measure the norepinephine in the body.  POTS often sends a lot of adreneline in the system as the autonomic system is out of whack. 

I will share bullet points of what I've learned in the 4 weeks:

-80% of people with POTS are women; ages 15-50.  It is not uncommon for teenage girls to have pretty severe cases.  I have read more than a few stories on the POTS facebook group of young women who are battling this pretty hard core....most of them pretty high achievers, ironically. 

-Onset can be linked to trauma, concussion, surgery, viral illness, pregnancy etc. And there seems to be an emerging connection to autoimmune 

-In the past it has taken an average of 2-4 YEARS to be diagnosed because so few Drs are familiar with it or even believe it exists.  It can be brutal to get diagnosed depending on where you live and access you have to medicine. 

-Its an 'autonomic nervous system" dysfunction- and is very complex. It can affect multiple body systems (urinary, temperature regulation, sleep, digestion/GI, heart rate and breathing, as well as cognitive issues- brain fogginess, headaches, concentration) 

-It can look and feel similar to anxiety in that heart rate and breathing and a feeling of 'dis-ease' is present along with overwhelming fatigue

-Treatment isn't straightforward....most of it tends to center around the heart rate/dizziness/fainting as that is usually the primary complaint, AFTER fatigue. There is no cure or fix, moreso medication and lifestyle adaptations. Drinking 90oz of electrolyte water daily (I use sugar free Nuun),  adding extra salt to the diet, eating small frequent meals, tight compression garments,, and Drs may prescribe various meds.  Ironically, exercise (Dallas Levine protocol) seems to be a signficant part of finding a way forward.  Also uncovering comorbidities that could be influencing  POTS (autoimmune, allergies, Lyme, Iron deficiency, Thyroid, hormones)

Check Out:
Facebook POTS and POstural Orthostatic Tarchcardia Syndrome groups. 

Dysautonomia International and DINET Discussion Board

YouTube search for POTS- Specifically YouTube "York Cardiology POTS"

https://my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots,  https://www.verywellhealth.com/postural-orthostatic-tachycardia-syndrome-pots-1746386

I'm not trying to be a DR. LOL  Just so much of what you said rings huge bells for me because I've been doing a lot of reading and research, I wanted to share what I've learned.  Obviously a tumor or something is possible, but POTS is such a beast to get diagnosed because its so complex and vexes DRs who aren't familiar with it, and meanwhile the patient struggles. 

[Ann.without.an.e]

Cortisol came back normal. She does the urine test today for an adrenal tumor but I guess that the normal cortisol removes the fear of a pituitary tumor?

 

 

[Soror]

I'm so glad she is on the path to figuring out the cause of her health problems. Best wishes on her journey!

[Ann.without.an.e]

12 hours ago, LarlaB said:

I JUST saw that you asked me about POTS another thread and I came and read this one.   I'm so sorry I didn't reply sooner.  ABSOLUTELY  it sounds like POTS!  Especially with onset of issues starting after concussion.  But also its very common in younger girls. 

It sounds exactly exactly exactly like POTS.  The postural varying heart rate is the dead giveaway..... In my limited research, there are not many conditions that will consistently give a positive to the sit stand test, but can run wild in multiple body systems as well.   And there is can be an autoimmune component as well- meaning it tends to run along side other issues....Celiac, Ehlers, MASTC and on and on.   Google Poor Mans Tilt Test....essentially she sits calmly for 10 minutes and you take her pulse or use heart rate monitor, then she stands up.  Simply stand.  Don't walk, sway, shift or move.  Just stand.  If its a heart rate monitor, you should see a change within 15 seconds...if its POTS the heart rate will keep increasing.  The standard is for her age, if her heart rate increases 40 beats from sitting to standing OR goes over 120, its POTS.  Given her other issues, its as simple as that. 
 

 

 

It went from laying down at 88 to 124 standing but didn't keep elevating.  I had her take it again from sitting and it was 98 before and 115 after.   

Edited September 18, 2019 by Attolia

[Jean in Newcastle]

Please note that if the adrenal glands as a primary source of low cortisol is ruled out, you can still have adrenal problems as a secondary problem. All that means is that if something is wrong with another body system etc that it still taxes your adrenals and wears them out. But the only solution then is to address the primary problem. (Which I realize is what you are desperately trying to find.). 

Edited September 18, 2019 by Jean in Newcastle

[Xahm]

My cousin had POTS as a high achieving teenage girl and ended up getting treatment at a residential facility (I think through Mayo) almost like an addiction treatment facility to reset her body in some way. She now is a high achieving young woman who had to be very strict about her bed time but is otherwise doing really well. I know literally nothing more than that, but I figured I'd mention that as something to look into. Her family aren't quack medicine kinds of people, but if I'd just heard about the treatment, my mind would jump there.

[Pen]

The update is promising as to having a doctor taking it seriously.