Dr. Hive, what's this?

[Night Elf]

Dd17 has been having a rough time. Here are her symptoms:

 

Seems to feel tired all of the time. She gets enough sleep and sometimes even more than she should.

 

Has incidents of feeling lethargic. Her limbs feel sore and heavy, like gravity is pulling her down. She feels fuzzy mentally as well. Sometimes she feels dizzy.

 

She's feeling depressed because of a few things but that is normal stuff, i.e. school starting back and her best friend going away to college. She's also been feeling a little paranoid, but she doesn't know why. She's on meds for anxiety.

 

I took her to the doctor. He ran about 10 blood tests for various things and the only thing that came back abnormal was her iron level. It's not low enough to be considered anemic, but low enough that he put her on iron supplements.

 

I'm going to make another appointment for her but I don't know what else to say to the doctor, or anything to suggest. What should we do?

[*lifeoftheparty*]

Lyme disease?? It's not always picked up right away by blood tests...

 

I know several people who have/have had it... the symptoms sound similar... but I'm sure it could be something else too...

[El...]

They already checked for mono, right?

[Pegs]

Dysautonomia?

[almondbutterandjelly]

I was thinking mono/Epstein Barr.

 

http://www.diagnose-me.com/symptoms-of/epstein-barr-virus-EBV.html

[Only me]

Fibromyalgia?

[Catherine]

Iron deficiency can cause all of the symptoms you describe, sometimes even in people who do not yet have anemia.  Not clear why some people are so very sensitive to iron deficiency.  If she has been taking the supplements faithfully and eating an iron-rich diet and still feels this way, get iron level checked again to ensure she is absorbing it.

[Junie]

I am borderline anemic and I have many of these symptoms, especially certain times of the month.  Taking supplements and eating iron-rich foods helps a lot.  I feel worse when I eat a lot of carbs (i.e. pasta without meat).

[Peaceful Isle]

Chronic Fatigue, Fibromyalgia, or Mono are my thoughts. 

 

 

[Tsuga]

Anemia even if it's technically "normal" it may not be normal for her.

 

In addition to iron, which makes me nauseous, plenty of leafy greens and healthy meats like fish.

[kroe1]

don't forget to consider the side effects of her anxiety medication.

[kewb]

Test for lyme and it's coinfection friends.

[Night Elf]

All great ideas. Thank you. Her doctor is a good one. He listens and asks questions so I have faith he'll try to work with us on this. I just wanted something to go on.

 

How long would it take for her to be on iron supplements for these symptoms to go away if they are related to anemia? She's been taking it (120mg) for 6 weeks. Is it too early to ask for a new blood test? She isn't eating an iron rich diet. She isn't big into leafy vegetables and hates seafood of any kind. She will eat baby spinach in her salads mixed with lettuce. Should I be asking her to eat a salad every day and transition her to full baby spinach leaves? Would those count as leafy greens? If so, how much should she aim to eat? 1 Cup? More?

 

I didn't think of mono. It's not presenting anything like when my oldest dd had it. Her fatigue is consistent. The lethargic episodes happen about once a week. I'll ask about it too.

 

I don't know anything about fibromyalgia, chronic fatigue, or lyme disease. Are there tests for those, or is it just diagnosed based on symptoms?

 

We did consider her anxiety meds. Because the med she was on wasn't working at nearly full dosage and because we didn't know if these symptoms were related, we asked that her medicine be changed. She is almost transitioned completely to the new medicine. She does have an appointment with her psychiatrist though, so we'll discuss these symptoms with her too.

[kewb]

There are tests for lyme disease and bartonella (a coinfection friend) but you need to be aware that there are often false negatives.

According to the cdc guidelines my dh does not have lyme. His symptoms beg to differ.

[Carrie12345]

CF and fibro are based on symptoms.  Tender spots (at or near joints) are markers for fibro and lyme.  Here's a little diagram for fibro points. http://www.fmnetnews.com/fibro-basics/diagnosis

 

In these 6 weeks, has she felt any improvement at all? I don't know off hand what the timeline "should" be, but I would think it'd be at least helping by now if that's a primary cause.

 

How is her overall eating?  Since learning more about nutrition, I'm a bit paranoid about teenage eating disorders (which can be bad even at sub-clinical levels.)

 

For many (not all,) exercise really helps with CF and fibro.  It's difficult, because people who are exhausted and uncomfortable aren't always eager to or capable of getting moving, but it breaks an evil cycle for some (like me.)

[Lizzie in Ma]

Hey Beth, sorry she isn't feeling well.

The Lyme test you want run is a Western Blot, IgG and IgM.  And you want a copy of the test to see if any Lyme specific bands showed up.  Because if it isn't CDC positive, the labs stamp it negative when it isn't.  (long, politically charged story there, but it's the truth).

 

Fibromyalgia is often a diagnosis when Lyme is missed.

[Night Elf]

CF and fibro are based on symptoms.  Tender spots (at or near joints) are markers for fibro and lyme.  Here's a little diagram for fibro points. http://www.fmnetnews.com/fibro-basics/diagnosis

 

In these 6 weeks, has she felt any improvement at all? I don't know off hand what the timeline "should" be, but I would think it'd be at least helping by now if that's a primary cause.

 

How is her overall eating?  Since learning more about nutrition, I'm a bit paranoid about teenage eating disorders (which can be bad even at sub-clinical levels.)

 

For many (not all,) exercise really helps with CF and fibro.  It's difficult, because people who are exhausted and uncomfortable aren't always eager to or capable of getting moving, but it breaks an evil cycle for some (like me.)

 

That link to fibro points says the symptoms must occur at least 11 weeks. Hers only started 7 weeks ago. I'll check it out with her later though.

 

She doesn't feel any improvement after taking the iron supplements.

 

She doesn't eat vegetables unless I either make or buy a salad. She likes deli meat, cheese and eggs and will snack on those. She likes pasta dishes but we only have that once a week. She also likes potatoes and we have those several times a week. The rest of us eat can veggies, but she hates all of them so dinner for her is usually a protein and starch.

 

She doesn't get any exercise. She's never like exercise. She wasn't the type of kid to run around and play outside. She hated her semester of PE at school, but she wasn't required to participate in the activities. She could just walk which is what she did. She told me she never walked above a leisurely pace. I could take her to walk at the park, but she wouldn't want to go when school starts. She has to do homework right after school, then eats dinner and falls asleep around 8:30 and 9:00. She gets about 9 hours of sleep a night.

 

[trulycrabby]

It could take several weeks or even months for your daughter to respond to the iron supplements.

[foxbridgeacademy]

I'd think Lyme Disease.

[happypamama]

Iron makes a big difference in how I feel very quickly, like within a week or two. I've been anemic during pregnancy a couple of times, like can't move, can't breathe, can't keep my eyes open, dizzy, etc., and within a week of starting supplements, I feel normal pregnancy tired, not totally exhausted.

 

I'd be asking about her thyroid too. Did they give you a number for that? If her TSH is above a 2, I'd be asking for treatment and referral to an endocrinologist. A lot of labs will say it's fine between 2 and 4, but I believe current research says to treat if it's over 2, especially with symptoms.

[catz]

I think you've gotten a lot of good suggestions.  But I was going to add sometimes un or under-treated depression and/or anxiety can cause these types of symptoms.  My primary symptoms of PPD manifested as physical symptoms and improved greatly with therapy and anti-depressants and some short term anti-anxiety.  I just wanted to throw that out there in case it might ring a bell.  I do think it is worth it to follow up on physical fronts - I did too.  I had low iron too and that certainly did not help.

 

And I do agree with the exercise thought no matter what the problem might be.  I would have her go for a 30 minute gentle walk every day outside.  Start with less if needed.  Holding a lot of stress and tension and not getting out is surely not helpful.  That's just part of a healthy lifestyle and an important life skill. 

[melmichigan]

As someone who struggles with severe anemia may I ask, what were the results of a full iron panel?  Not just one level, but ferretin, iron, TIBC, and saturation.  You have to look at the whole picture.  Some physicians do, but many look at one number and see normal, or assume because your hemoglobin is borderline that you aren't anemic.   My hematologist has me on 200mg of elemental iron a day to make any changes in iron levels, in contrast my general physician had me on 75-100mg.  Dosage is individualized but also may need changing depending on response.  Also worth noting is that people may absorb varying types of elemental iron differently, particularly with the classical salt preparations, and that can impact how quickly levels rise.  I cannot take any of the salt preparations, I simply no longer absorb them.  It's been said a lot but iron needs to be taken on a empty stomach an hour before or two hours after meals, preferably with some OJ, and for optimal absorption no milk or caffeine within 2 hours, before or after.  I take 75mg around 6am, then have breakfast after 8am.  I then stop all caffeine after lunch in order to have a 175mg dose later in the afternoon.  Ideally I would have a third dose to spread that out but I take thyroid medication in the evening.

 

A hematologist won't draw your iron levels (unless one thinks they are going down) more often than about every three months to allow for adequate response.  (If you wish you can read further on anemia to understand how the body processes iron to understand why.)  Now if we are discussing iron infusions then you can see lab results within a week or two.  She should be followed with routine lab draws if on supplemental iron until her levels stabilize and periodically thereafter.  Could her menstrual cycle be impacting her response to iron?  Does she struggle with heavy periods?  I just had a bad month despite meds and my iron stores were completely wiped out, again. 

 

I have fibromyalgia and my pain is worse when my iron levels are lower, it may be related to overall fatigue, which often causes more pain. Exercise is also very important for me in managing my fibromyalgia, but that is very individual.  Exercise also helps with depression and anxiety.

 

Her symptoms are hard, they could certainly be in line with an underlying anemia, or fibro, or anxiety.  It will be up to your physician and psychiatrist to work out which or which ones may apply.  I hope you get answers soon!

[lailasmum]

I agree with Melmichigan on needing to know all the numbers, I had very low iron a few years back and my doctor nearly didn't look beyond haemoglobin but she checked with someone else in the end and my iron stores were very low.  It took me about a year of supplements to get back to normal. I've been low since but not to that extent. I had quite a wide range of symptoms, stuff that didn't seem to be obviously related but it all cleared up with treatment. 

[Catherine]

One more thought, Beth: there are 2 symptoms you describe that you should keep a closer eye on: limbs feeling heavy, and paranoia. A sensation of heaviness is how it feels when there is muscle weakness.  People can experience muscle weakness with iron deficiency\anemia, but dozens of other conditions can cause this too.  Just keep tabs on her, especially if she is describing any progression of it over time.

 

Paranoia is also potentially concerning.  The first thing I wonder about is a psychiatric condition, like severe depression or mania.  Manic people can be paranoid for sure, and this can be triggered by anti-depressant meds (which are sometimes given for anxiety FYI), but your description of her doesn't fit at all with mania.  Severe depression can also be associated with paranoia, and of course other conditions that are less common.  Just keep tabs on her and watch for anything new or concerning.  

 

You sound extremely sensible.  

 

ETA: iron deficiency can cause strange neurologic\psychiatric symptoms (like pica) so that might explain the paranoia...still, keep an eye.

[Night Elf]

I don't have her numbers. He didn't send them to me but I can ask for them when I take her in.

[melmichigan]

Depending on what type of iron she is taking you might want to see if it's possible to divide the dosage.  The small intestine will only absorb so much iron salt at a time (debated in other preparations) so she will absorb more if it's spread out, this is also why extended release versions are sometimes used.

[Ausmumof3]

My niece had similar physical symptoms at the same age without the paranoia and it was due to her iron level. I also think for a lot of kids around this age they tend to start moving to a more adult work load and a busier lifestyle and it can be hard for the body to adjust - I know this was true for me. I don't know if it's true for your dd but it's something to consider anyway. Also I remember she had to take liquid iron as the tablet form wasn't being absorbed for some reason.

[mom2samlibby]

Along with the iron level, I'd want her B12 and folate levels tested.  With the exception of the paranoia, I had all those same symptoms last year, plus some others.  My B12, folate, and iron levels were all off.  All symptoms have decreased with B12, iron, and folate vitamins.  Make sure you get copies of the test results from the doctors.  My doctors told me that my numbers were fine, yet the lab had flagged 5 items.  I've been treating myself and feel so much better!