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

[Ann.without.an.e]

1 hour ago, Ktgrok said:

Beans are high in iron (for a vegetarian anyway), plus she's getting 18 percent or more of her iron in those granola bars, so yeah....sounds like dinner might sometimes be low on protein but that's it. Again, I'm thinking absorption issue, not intake issue. 

 

This is my thought too, but since she has no intestinal issues they won't buy this.  Maybe time will tell.  Again, I am going to request and be a mama bear about a celiac test at her next draw.

52 minutes ago, PeterPan said:

Interestingly, vit D is used in processing that, pulling the methyls off the methylcobalamin. Vitamin D is also a mood stabilizer. Turns out most of us in my family have a vitamin D receptor gene (VDR) defect and need supplementation, go figure.

 

Her Vitamin D was on the low end.  I think the normal range was 20-120 and she was 21.  I am going to buy some drops for her and push those too.

56 minutes ago, PeterPan said:

Is she eating fruit? Fruit has enzymes to build her digestion. So when she's saying she doesn't feel well after eating certain meats or foods, that would be a big sign to look at fruit. The nutritionist I used puts people on 2-4 cups of fruit, divided across the day. 

She could put raisins in her oatmeal and have a tablespoon of molasses daily. Do greens like kale and spinach have iron? Check. That way they'd come with the enzymes. 

 

 

She doesn't really like fruit very much.  

57 minutes ago, Pen said:

Her B12 sources? 

 

No idea, right now the iron supplement she is on is loaded. 

[Ann.without.an.e]

2 minutes ago, sassenach said:

Now that you’ve identified the anemia, you might consider celiac testing. My friend’s daughter was severely anemic all through high school. It wasn’t until her early 20’s that she had a full blown celiac crisis and discovered that celiac was the cause of the anemia. She’s suffered a lot of consequences for how long it went unidentified. 

 

I am making her eat at last some gluten every day between now and her next draw and I am going to be adamant about it.  When I mentioned it to the NP she said that celiac doesn't cause anemia but I think she's not right in this.

Edited December 17, 2018 by Attolia

[sassenach]

Just now, Attolia said:

 

I am making her eat at last some gluten every day between now and her next draw and I am going to be adamant about it.  When I mentioned I to the NP she said that celiac doesn't cause anemia but I think she's not right in this.

I realized that after I posted that I was late to the party. She’s absolutely wrong. Ask her what the mechanism for iron absorption is. Spoiler: it’s absorbed in the small intestine. 

[Ann.without.an.e]

1 hour ago, Ktgrok said:

Beans are high in iron (for a vegetarian anyway), plus she's getting 18 percent or more of her iron in those granola bars, so yeah....sounds like dinner might sometimes be low on protein but that's it. Again, I'm thinking absorption issue, not intake issue. 

 I updated with full lab results with you in mind, Katie, because you were asking such specifics 🤣  Let me know if you think something seems off base for anemia.  From my little bit of research, everything that is off could tie back to anemia.  But, like we both don't understand, is there a deeper root cause to the anemia.

[Pen]

26 minutes ago, Attolia said:

 

This is my thought too, but since she has no intestinal issues they won't buy this.  Maybe time will tell.  Again, I am going to request and be a mama bear about a celiac test at her next draw.

 

Her Vitamin D was on the low end.  I think the normal range was 20-120 and she was 21.  I am going to buy some drops for her and push those too.

 

She doesn't really like fruit very much.  

 

No idea, right now the iron supplement she is on is loaded. 

 

How much exactly = loaded?  And what form is it (cyanocobalamin, methylcobalamin...) ?

And if she’s supplementing B12, is she also supplementing folate or eating lots of green leafy folate rich vegetables?

[Ann.without.an.e]

5 minutes ago, Pen said:

 

How much exactly = loaded?  And what form is it (cyanocobalamin, methylcobalamin...) ?

And if she’s supplementing B12, is she also supplementing folate or eating lots of green leafy folate rich vegetables?

 

 

[Pen]

I’m glad it has methyl forms of both B12 and folate.  My understanding is that for most of us those are best (possibly some people are “over methylators” and different in that) forms currently available here. 

 I take more methylcobalamin than that generally daily, and extra if I feel the need.  As with D levels, I think the “normal “ is too low. Apparently the Japanese give substantial B12 at any sign of neurological dysfunction.  In past,  I had to have B12 injections because I may not have been absorbing it well.  I use sublinguals now because I probably don’t absorb BI2 eaten as well as from a sublingual.

[Pen]

Many vegetarians get low on B12.

[Monica_in_Switzerland]

Just throwing this out there.  I was very resistant to iron by IV for years, in retrospect, it seems silly.  Iron supplementation did absolutely nothing for me.  With an iron IV, you are feeling WAY better by the next day, in terms of anemia symptoms.  And you stay feeling better.  At her levels, she may need several in a 6 month period, then could begin spacing them out.  Worth considering!

[Pen]

https://chriskresser.com/b12-deficiency-a-silent-epidemic-with-serious-consequences/

is an example, not necessarily a great article, that I just found googling Japan and B12. Google scholar would give more scientific ones.  

[Monica_in_Switzerland]

Oh, forgot to add:  The other advantage to an iron IV treatment is that it bypasses the gut, so if there is an absorption issue, it can get around it by going straight to the blood.  

I'm sure it's not the answer for everyone, but I am soooo glad I switched GPs and my new guy just sat me down as was like, "Get over your needle phobia, because you will feel SO MUCH BETTER with iron."  And he was right.  And I'm not over my needly phobia, but he let's me lie down so I don't pass out.  LOL

[Pen]

5 minutes ago, Monica_in_Switzerland said:

Just throwing this out there.  I was very resistant to iron by IV for years, in retrospect, it seems silly.  Iron supplementation did absolutely nothing for me.  With an iron IV, you are feeling WAY better by the next day, in terms of anemia symptoms.  And you stay feeling better.  At her levels, she may need several in a 6 month period, then could begin spacing them out.  Worth considering!

 

I agree.  

[J-rap]

That's great that you finally have a diagnosis.  

When my iron levels were really down, it took about a month to feel better on a high prescription dose (it probably gradually moved that direction, I can't really remember).  Once I felt better, I could not believe how great I felt.  It had gone the other direction so slowly that I really couldn't even tell anymore if how I was feeling was normal or not.  But once I was better, it was the difference between night and day.

The idea of celiac being the condition behind it is an interesting thought.  

Also, you've probably been told this already, but I've been told many times that you have to take vitamin C with iron in order for the iron to be absorbed.

[Ann.without.an.e]

33 minutes ago, Monica_in_Switzerland said:

Just throwing this out there.  I was very resistant to iron by IV for years, in retrospect, it seems silly.  Iron supplementation did absolutely nothing for me.  With an iron IV, you are feeling WAY better by the next day, in terms of anemia symptoms.  And you stay feeling better.  At her levels, she may need several in a 6 month period, then could begin spacing them out.  Worth considering!

 

I know but when I mentioned it to the lead doctor at her PCP he laughed and said that it "isn't a thing".  I am a little peeved about it honestly.  Then I said that she can barely walk, energy- wise, and he said "she walked into the office so she can walk and she's fine, she just needs iron supplements".  I need to find a new PCP.  I hate to do this at 16 because I have no idea where there are decent doctors around here. 😞 

[Pen]

On 12/13/2018 at 11:27 AM, Attolia said:

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

 

She pretty clearly seems to have iron / ferritin deficiency. And presumably anemia from that. But I would not be sure she has enough Vitamin B12 etc. even though she may not have a deficiency causing the anemia.

Particularly if her nutrition intake has actually been pretty good, I would wonder why such very low iron and wonder if there may be an absorption problem (even if not celiac)— and it is possible that many nutrients and vitamins could be low.  

And if she can’t absorb well, taking a supplement by mouth may not help as much as desired.

[Ann.without.an.e]

2 minutes ago, J-rap said:

That's great that you finally have a diagnosis.  

When my iron levels were really down, it took about a month to feel better on a high prescription dose (it probably gradually moved that direction, I can't really remember).  Once I felt better, I could not believe how great I felt.  It had gone the other direction so slowly that I really couldn't even tell anymore if how I was feeling was normal or not.  But once I was better, it was the difference between night and day.

The idea of celiac being the condition behind it is an interesting thought.  

Also, you've probably been told this already, but I've been told many times that you have to take vitamin C with iron in order for the iron to be absorbed.

 

 

I have told her this so many times.  She has been feeling bad for so long that she has no idea what good feels like.

[Ann.without.an.e]

1 minute ago, Pen said:

 

She pretty clearly seems to have iron / ferritin deficiency. And presumably anemia from that. But I would not be sure she has enough Vitamin B12 etc. even though she may not have a deficiency causing the anemia.

Particularly if her nutrition intake has actually been pretty good, I would wonder why such very low iron and wonder if there may be an absorption problem (even if not celiac)— and it is possible that many nutrients and vitamins could be low.  

And if she can’t absorb well, taking a supplement by mouth may not help as much as desired.

 

I guess this is why they will retest in a month, see if she is absorbing, and refer her to hematology if she isn't?  I don't know 😭

[Pen]

12 minutes ago, Attolia said:

 

I know but when I mentioned it to the lead doctor at her PCP he laughed and said that it "isn't a thing".  I am a little peeved about it honestly.  Then I said that she can barely walk, energy- wise, and he said "she walked into the office so she can walk and she's fine, she just needs iron supplements".  I need to find a new PCP.  I hate to do this at 16 because I have no idea where there are decent doctors around here. 😞 

 

There aren’t many decent doctors here that I’ve been able to find either.  

8 minutes ago, Attolia said:

 

I guess this is why they will retest in a month, see if she is absorbing, and refer her to hematology if she isn't?  I don't know 😭

 

?

what does “it’s not a thing” mean?

pcp sounds like a jerk

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3459360/

[Ann.without.an.e]

25 minutes ago, Pen said:

 

There aren’t many decent doctors here that I’ve been able to find either.  

 

?

what does “it’s not a thing” mean?

pcp sounds like a jerk

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3459360/

 

I feel like he was being a jerk too. It made me sad. He is a friend, not a close friend but still. 

[TrulySusan]

I think you mentioned Crohn's earlier in the thread and I wanted to say that my ex SIL had anemia for at least a couple of years in high school before they diagnosed her Crohn's. It was related but Crohn's wasn't a common diagnosis back then. ( Hers was diagnosed when surgery for appendicitis turned out not to be appendicitis.)

[ktgrok]

3 hours ago, Attolia said:

 

I am making her eat at last some gluten every day between now and her next draw and I am going to be adamant about it.  When I mentioned it to the NP she said that celiac doesn't cause anemia but I think she's not right in this.

That’s ridiculous! One of the main indicators for celiac is anemia!!!!

[ktgrok]

Ok, so MCV can be from bleeding or from iron deficiency. More likely iron deficiency, but if it doesn't come up they need to check for occult blood loss as well, just to be safe. But yes, the labs point to iron deficiency, but how on earth she got that low, and stayed that low, for years, is the question. That she's felt like this for years and no one thought to freaking check to see if the menstruating vegetarian might be anemic I have NO idea, and you need to switch doctors. Seriously. That's malpractice. 

 

[Katy]

2 minutes ago, Ktgrok said:

Ok, so MCV can be from bleeding or from iron deficiency. More likely iron deficiency, but if it doesn't come up they need to check for occult blood loss as well, just to be safe. But yes, the labs point to iron deficiency, but how on earth she got that low, and stayed that low, for years, is the question. That she's felt like this for years and no one thought to freaking check to see if the menstruating vegetarian might be anemic I have NO idea, and you need to switch doctors. Seriously. That's malpractice. 

 

 

Right?  I thought it was standard practice to run blood labs for annual physicals?  How did this not get caught before?

[mrsfellman]

Okay, I'm new and I don't have the time to read everyone's responses but feel lead to share a bit of my personal history. I've seen the updated lab results and while Anemia seems to be a certain thing I don't believe you should rule that as the root cause just yet. Has she seen a Cardiologist? Did they run a FULL Thyroid panel?

A bit of where I'm coming from...I am now 35 yrs old and my health history is complicated to say the least. Growing up I only saw Chiropractor from ages 18 months to age 23. I had several things that popped up in my pre-teens/teens that mostly were ignored. Such as, constant fatigue, running unexplained fevers for weeks on end, heart palpitations, a goiter. At 17 my chiro ran blood work that showed my Thyroid levels in the Hypo range but after a few "adjustments" and no one else said anything. I also tried to explain to him once how my heart did these weird things and I was laughed off saying "your too young to have heart issues". Fast forward past alot of things and after my first born son turned 1 I finally got a MD to listen and was not only Diagnosed with an Autoimmune Thyroid condition but they also ordered an Echo-cardiogram due to this new Dr. picking up a faint heart murmur. I was quickly called back with the news that I had a couple of major heart defects. I had Open Heart Surgery a few months later to repair some of the problems. Now eight plus years later and learning alot about my body and thyroid health I know how much my thyroid levels can effect my heart health as well as how my autoimmune issues effect other areas such as anemia, low Vit D levels, B12 issues, nerve issues.

Keep asking questions like you are and don't ignore anything. The little stuff does matter and I've had multiple medical personal try to brush me off and I've had to learn to keep pushing when I need to and that includes firing some on my medical team and finding those who will take the time to fully listen to me and take the time to needed to help me stay as heathly as possible. 

[Monica_in_Switzerland]

2 hours ago, Attolia said:

 

I know but when I mentioned it to the lead doctor at her PCP he laughed and said that it "isn't a thing".  I am a little peeved about it honestly.  Then I said that she can barely walk, energy- wise, and he said "she walked into the office so she can walk and she's fine, she just needs iron supplements".  I need to find a new PCP.  I hate to do this at 16 because I have no idea where there are decent doctors around here. 😞 

 

That's nonsense.  I do get the impression that iron infusions are more often given here than in the USA, but it is definitely "a thing" anywhere modern medicine is practiced.  LOL.  I think doctors maybe avoid it because it requires supervision, as there can be an allergic reaction to it.  But the immediate relief of symptoms is just so wonderful.  It's a lot easier than messing with pills for months only to find you are not absorbing them (worst case, obviously).  Can you do a walk-in appointment at your hospital?  I would definitely seek a second opinion.  

 

Also, an iron shot is not the same thing, and can have more complications and side-effects.  You want the drip.  It takes about 20 minutes and then you're ready to take up tennis or MMA fighting.  🙂  

[Pen]

Reticulocytes were normal despite the extremely low iron?

[Monica_in_Switzerland]

To add, because apparently, I can't gather all my thoughts into one post these days...

It sucks to have to find a new doctor, but it sucks worse to not have the treatment you want, when your request is reasonable.  Finding that doctor who is willing to take your own ideas on treatment into consideration is SO great.  I'd hunt around a bit.  

[Ann.without.an.e]

8 minutes ago, Pen said:

Reticulocytes were normal despite the extremely low iron?

 

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)

 

[May]

Thanks for the update😊 It’s hard to believe this was missed😳Praying for a quick recovery🙏🏻

[Ann.without.an.e]

21 minutes ago, mrsfellman said:

Okay, I'm new and I don't have the time to read everyone's responses but feel lead to share a bit of my personal history. I've seen the updated lab results and while Anemia seems to be a certain thing I don't believe you should rule that as the root cause just yet. Has she seen a Cardiologist? Did they run a FULL Thyroid panel?

A bit of where I'm coming from...I am now 35 yrs old and my health history is complicated to say the least. Growing up I only saw Chiropractor from ages 18 months to age 23. I had several things that popped up in my pre-teens/teens that mostly were ignored. Such as, constant fatigue, running unexplained fevers for weeks on end, heart palpitations, a goiter. At 17 my chiro ran blood work that showed my Thyroid levels in the Hypo range but after a few "adjustments" and no one else said anything. I also tried to explain to him once how my heart did these weird things and I was laughed off saying "your too young to have heart issues". Fast forward past alot of things and after my first born son turned 1 I finally got a MD to listen and was not only Diagnosed with an Autoimmune Thyroid condition but they also ordered an Echo-cardiogram due to this new Dr. picking up a faint heart murmur. I was quickly called back with the news that I had a couple of major heart defects. I had Open Heart Surgery a few months later to repair some of the problems. Now eight plus years later and learning alot about my body and thyroid health I know how much my thyroid levels can effect my heart health as well as how my autoimmune issues effect other areas such as anemia, low Vit D levels, B12 issues, nerve issues.

Keep asking questions like you are and don't ignore anything. The little stuff does matter and I've had multiple medical personal try to brush me off and I've had to learn to keep pushing when I need to and that includes firing some on my medical team and finding those who will take the time to fully listen to me and take the time to needed to help me stay as heathly as possible. 

 

 

Yes, she still has an appt with Cardiology.  NP doesn't want to assume that anemia is the only factor and she still wants her to get the echocardiogram.

She has a diagnosed autoimmune thyroid condition (hashimotos).  She isn't close to hyperthyroid in her labs though.

Thank you for your thoughts.  It is good to know that I need to keep the cardiology appt.

Edited December 17, 2018 by Attolia

[prairiewindmomma]

Attolia, I mentioned above that I have had good doctors and bad doctors. Fwiw, my better ones have generally been internal medicine doctors and I always chatted with the receptionist who makes the intake appointment that I wanted someone with x, y, and z characteristics if I was walking into it blindly. Generally, they have also had part time teaching positions at the local medical school so they are up on research as well.

I was upfront in that initial appointment about concerns and based on their responses, I either cut bait or moved forward in a good relationship. I am about to ditch an ophthalmologist because he was truly terrible to Ds—qualified physician but a bully to Ds and rough in his exams. 

It’s a hard switch, initially but my beloved primary dr who we had for 15 years made a few bad calls with re: to things that made it clear that she was great for the flu and minor wounds and not for the weird and complicated things that began to dominate out medical lives for a time.

[mrsfellman]

20 minutes ago, Attolia said:

 

 

Yes, she still has an appt with Cardiology.  NP doesn't want to assume that anemia is the only factor and she still wants her to get the echocardiogram.

She has a diagnosed autoimmune thyroid condition (hashimotos).  She isn't close to hyperthyroid in her labs though.

Thank you for your thoughts.  It is good to know that I need to keep the cardiology appt.

Good to hear! Hashi's is my diagnosis as well and I run low in the past on Vit D, Ferritin, B12s, in such. Sounds like you are on a good "digging deeper" path. If you haven't already read it yet I Highly recommend Dr. Izabella Wentz's books and blog/website for anyone with Hashi's. And for the record I had get heart episodes periodically even when my labs are more normal to hypo range. Although not anything like when I swung super hyper earlier this year and had to tit-rate my dose down twice. 

[ktgrok]

Another reason for running B12 and D is to see if there is a pattern of malabsorption. If she was low on multiple nutrients it is another sign that there is something going on in the gut. 

And for what it is worth, my son is WAY less anemic, and we tested for celiac and it came back positive this morning. 

Oh, and most labs now consider Vitamin D to be "insufficient" at 25. Deficient is under 20, insufficient is 20-30, ideal is 30 and above. 

[prairiewindmomma]

Katie—meant  like for the pattern of malabsorption and vitamin D advice (my dr likes to see 40+ on vitamin D—ideally closer to 60)....not that your Ds has celiac.

[ktgrok]

16 minutes ago, prairiewindmomma said:

Katie—meant  like for the pattern of malabsorption and vitamin D advice (my dr likes to see 40+ on vitamin D—ideally closer to 60)....not that your Ds has celiac.

lol, gotcha! Yeah, mine likes 50 or above if possible or at least near there. My son's is 25 and that was considered low and we were advised to start supplementing immediately. That a doctor would say 25 is normal is ridiculous to me. Of course, this is a doctor that thinks a girl gets that iron deficient without any other complications, and thought that blatant anemia symptoms were "anxiety" so I guess I shouldn't be surprised. 

[Ann.without.an.e]

4 minutes ago, Ktgrok said:

lol, gotcha! Yeah, mine likes 50 or above if possible or at least near there. My son's is 25 and that was considered low and we were advised to start supplementing immediately. That a doctor would say 25 is normal is ridiculous to me. Of course, this is a doctor that thinks a girl gets that iron deficient without any other complications, and thought that blatant anemia symptoms were "anxiety" so I guess I shouldn't be surprised. 

 

Her D level was 21 🤷🏻‍♀️

[ktgrok]

2 minutes ago, Attolia said:

 

Her D level was 21 🤷🏻‍♀️

Oops, that's what a I meant. 

Yeah, that's low. And she should be on D supplements ASAP. 

[Ann.without.an.e]

34 minutes ago, Ktgrok said:

Another reason for running B12 and D is to see if there is a pattern of malabsorption. If she was low on multiple nutrients it is another sign that there is something going on in the gut. 

And for what it is worth, my son is WAY less anemic, and we tested for celiac and it came back positive this morning. 

Oh, and most labs now consider Vitamin D to be "insufficient" at 25. Deficient is under 20, insufficient is 20-30, ideal is 30 and above. 

 

I’m both happy and sad about your DS. I know how relieving it is to have a diagnosis because then you can have a plan but celiac’s is hard. They thought DS had it but it turned out to be crohns. He cannot tolerate any level of gluten though so sometimes I wonder if he doesn’t have both?

 

[kirag714]

Just saw your updated first post - I didn't have time to read all the responses but I wanted to chime in because anemia is something I know quite a bit about.

I have aplastic anemia - this is a life-threatening bone marrow failure disease when your body attacks your bone marrow and you stop being able to make any blood cells. It's very rare (1 in a million) and thankfully your daughter most certainly does NOT have this because then all her blood lines would be low, not just Hg. But mine came on so slowly that when I was tested at my doctor's at a routine physical my platelets were 24, white count low, and Hg 7.4 and I just felt "a little tired." So this can totally sneak up you and you might not even notice your body is running on fumes because it's gotten used to it slowly. (BTW I've been treated for this and I'm doing really well right now, but it's a dangerous disease that can come back at any time).

There are lots of different causes of anemia - low iron is just one. For instance, for aplastic anemia patients adding iron to the diet does nothing and in fact because of frequent transfusions AA patients are more likely to deal with iron overload (yes that's a thing) than too little iron. There are also types of hemolytic anemia, where you body makes red blood cells but they are destroyed, anemia caused by low EPO, etc. - so it's important to understand what you're dealing with before starting treatment. But if all indications are that this is due to low iron then that is good news because that is generally pretty easy to treat.

Finally, my son also deals with anemia - the regular iron-deficient kind thank goodness! He was in treatment for it off and on for a while, but being a young 23 year old guy was not following his doctor's orders about taking care of himself. Late last February he was feeling really unwell - tired, fuzzy brained, etc. and one day just was feeling so upset and anxious that he hung up on his dad who was just trying to help him. I made him go see his PCP and low and behold his Hg was 6!! No wonder he was so agitated - his body was not getting oxygen at all. They sent him straight to the ER and he was in the hospital for 4 days getting transfusions and iron infusions. So anyone who says that the fact that you are functioning (barely) means you don't have low Hg doesn't know what they are talking about.

Good luck to your daughter and I hope you are on the right path now!

[Pen]

28 minutes ago, Attolia said:

 

Her D level was 21

I recommend reading on Vitamin D council pages.

 

and. https://www.drnorthrup.com/audio/vitamin-d-optimal-range/

does she have a doctor for Hashimotos? Or just the pcp?

 

[Ann.without.an.e]

5 minutes ago, Pen said:

I recommend reading on Vitamin D council pages.

 

and. https://www.drnorthrup.com/audio/vitamin-d-optimal-range/

does she have a doctor for Hashimotos? Or just the pcp?

 

Her hashis is treated by someone different. In fact, I messaged this person with her numbers and I’m curious if she’ll have input as well. NP said that I needed to since thyroid and iron levels can go hand in hand. 

[ktgrok]

Just saw this: https://www.bmj.com/bmj/section-pdf/904879?path=/bmj/351/8024/Practice.full.pdf

This part jumped out at me regarding your daughter: 

Offer serological testing for coeliac disease to:– People with any of the following:

– Persistentunexplainedabdominalor gastrointestinal symptoms

– Faltering growth
– Prolonged fatigue
– Unexpected weight loss
– Severe or persistent mouth ulcers
– Unexplained iron, vitamin B12, or folate deficiency – Type 1 diabetes, at diagnosis
– Autoimmune thyroid disease, at diagnosis
– Irritablebowelsyndrome(inadults)

[TravelingChris]

3 hours ago, prairiewindmomma said:

Attolia, I mentioned above that I have had good doctors and bad doctors. Fwiw, my better ones have generally been internal medicine doctors and I always chatted with the receptionist who makes the intake appointment that I wanted someone with x, y, and z characteristics if I was walking into it blindly. Generally, they have also had part time teaching positions at the local medical school so they are up on research as well.

I was upfront in that initial appointment about concerns and based on their responses, I either cut bait or moved forward in a good relationship. I am about to ditch an ophthalmologist because he was truly terrible to Ds—qualified physician but a bully to Ds and rough in his exams. 

It’s a hard switch, initially but my beloved primary dr who we had for 15 years made a few bad calls with re: to things that made it clear that she was great for the flu and minor wounds and not for the weird and complicated things that began to dominate out medical lives for a time.

This.  Though I have to say I have had CRNPs who were great and totally up to date on rarer medical issues, same with some specialty PAs and my current primary care is a family doctor, not internal med, but he might as well be. He is on the teaching staff and has been for years and really, the most important issue is can you trust what they say.

[PeterPan]

14 hours ago, Attolia said:

Her Vitamin D was on the low end.  I think the normal range was 20-120 and she was 21.  I am going to buy some drops for her and push those too.

Oh dear. She probably needs more than drops. I imagine they taste nasty awful. Fwiw, I have that genetic defect and I have to take 10k IU a day in the summer, when I'm laying out, and I just upped mine to 15k IU a day for winter because I was dragging. In the summer I was taking 200 mcg K2 a day https://www.amazon.com/gp/product/B077YT866P/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 and I just upped it to 400 mcg a day to help me absorb that higher dose. If her gut isn't working well, she'll definitely want to add the K-2. 

Those doses vary by the person, but I'm just saying drops may not be enough to get her there. Also, see what other people say, but I felt stellar with my vit D at the top of the normal range for my labs and like CRAP as soon as we dropped it. I've seen other people saying the same thing. It may not be a thing to pussyfoot around or on let stay just in the middle. Given that she's having anxiety, there may need to be some attention to that.

Also, if you're running genes, you could look at the TPH2 gene as well and see if she'd benefit from 5HTP. 

Beyond that, outta my league. I agree with the advice to be attentive to the thyroid meds, but if she's on NDT it sounds like you're already up on that.

 

[moonflower]

Peterpan, does the TPH2 gene require D supplementation or is that something else?  (feel free to tell me I'm being too invasive, hah)

[Pen]

13 hours ago, PeterPan said:

Oh dear. She probably needs more than drops. I imagine they taste nasty awful.

The drops I've had (Carlsson’s) taste fine.  

 

Quote

Fwiw, I have that genetic defect and I have to take 10k IU a day in the summer, when I'm laying out, and I just upped mine to 15k IU a day for winter because I was dragging. In the summer I was taking 200 mcg K2 a day https://www.amazon.com/gp/product/B077YT866P/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 and I just upped it to 400 mcg a day to help me absorb that higher dose. If her gut isn't working well, she'll definitely want to add the K-2. 

Vitamin K is a good one to remember, and there are 2 types that do different things.  I have a Life Extension Super K type with both forms of K.  1500mcg K1; 1100 mcg K2 (in itself 2 forms). You  are probably thinking in terms of going with the D, but the K1 could also be low.  

If her gut isn’t working properly all sorts of things could be low. 

Many B vitamins for example.  (B1 is involved with energy also. ) Are a thing I personally have to supplement.  

 

[Terabith]

Yeah, I've always had low vitamin D, and when we did genetics, I had the gene for it.  Plus my mom and my children have low D.  No matter how much D I took, it wouldn't budge, even taking really good, top quality stuff, until the chiropractor gave me a formulation with vitamin D and vitamin K in it.  The K seems to be key, because once I started with that, it skyrocketed and last time it was checked was over 60. 

[The Governess]

I wanted to chime in here. First, I have struggled with anemia both as a teenager and college student, and also most severely when I was pregnant. All of your dd’s symptoms - racing heart, extreme fatigue, shortness of breath... are exactly what I experienced.  At my worst, I would have to lay down and recover after something as simple as taking a shower. Sometim s even talking would wind me. Interestingly, like your daughter, I have also been on the underweight/too thin side for much of my life, and tend towards hypoglycemia. And for several years now I have been gluten-free (gluten started giving me flu-like joint pain after my pregnancy).

I used to be a carb lover, but I have learned that I have to eat a lot of protein to feel good and have sustained energy. I bet your daughter isn’t eating much protein. Also, I will be honest and say that standard iron supplements didn’t help me at all. The only thing that successfully brought my iron levels up has been a combo of red meat and vitamin C. But I know there are much better iron supplements out there that I did not have knowledge of at the time.

Anyway, I just wanted to let you know that even though I have suffered from anemia in the past, it hasn’t been an issue for me in the past decade after making some dietary changes.  Hopefully your daughter will get her energy back very soon and be able to maintain it.

 

[ktgrok]

6 hours ago, lovelearnandlive said:

I wanted to chime in here. First, I have struggled with anemia both as a teenager and college student, and also most severely when I was pregnant. All of your dd’s symptoms - racing heart, extreme fatigue, shortness of breath... are exactly what I experienced.  At my worst, I would have to lay down and recover after something as simple as taking a shower. Sometim s even talking would wind me. Interestingly, like your daughter, I have also been on the underweight/too thin side for much of my life, and tend towards hypoglycemia. And for several years now I have been gluten-free (gluten started giving me flu-like joint pain after my pregnancy).

I used to be a carb lover, but I have learned that I have to eat a lot of protein to feel good and have sustained energy. I bet your daughter isn’t eating much protein. Also, I will be honest and say that standard iron supplements didn’t help me at all. The only thing that successfully brought my iron levels up has been a combo of red meat and vitamin C. But I know there are much better iron supplements out there that I did not have knowledge of at the time.

Anyway, I just wanted to let you know that even though I have suffered from anemia in the past, it hasn’t been an issue for me in the past decade after making some dietary changes.  Hopefully your daughter will get her energy back very soon and be able to maintain it.

 

Were you ever checked for celiac or other autoimmune issues? Anemia plus low weight plus joint pain sure screams that!

[Ann.without.an.e]

Bumping for update #3, added to original post and here...

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 ❤️