3

votes

What could cause physical and mental fatigue besides thyroiditis?

Answered on September 12, 2014
Created March 23, 2012 at 2:26 AM

Eight months of eating strict gluten-free paleo after a celiac disease diagnosis, I still don't feel back to normal. Most days it feels like I'm living in molasses and my brain doesn't function well enough for my work. I do have days where I feel like normal, just enough to remind me that this fatigue thing is out of my norm, but then I sink back down into the fatigue. I had a followup appointment with my GP and she set me up with a gastroenterologist (for an endoscopy) and immunologist (for allergy testing), but in the meantime, I'd like to see if I can come up with some leads / suggestions / more info to give these specialists, because right now I feel like I have nothing for them. All I know is that I feel bad.

I've had TSH tested 3 times (2.2, 1.8, and 2.15 mIU/L), all within the normal range. I had Free T4 tested (1.2 ng/dL), also normal. And I just got results for TPO and TBG antibodies to check for Hashimoto's thyroiditis, and both were negative (under 20 IU/ml for anti-TBG, and 12 IU/ml for anti-TPO). So it seems highly unlikely that something is wrong with my thyroid.

I've twice had my blood nutrient panels done, and all the nutrients tested were in normal ranges, including ferritin. Sodium and potassium were low, but still in the normal range, and everything else was smack dab in the middle of their ranges.

So, I'm at a loss for what could be wrong. I ordered some cortisol saliva tests but haven't gotten those results back yet. Edit: cortisol levels were spot on where they ought to be.

What other causes of mental and physical fatigue are there?

What kinds of things should I ask/tell my gastroenterologist and immunologist?


Some background on me:

I went of hormonal birth control 8 months ago after being on it for 10 years. My cycle quickly adjusted to normal, but I do have bad cramps and pre-menstrual breast tenderness (which I didn't have as a teenager). Those have gone away since I started eating more seaweed and brazil nuts.

I typically get 8-9 hours of sleep a night, and I was using blackout curtains until the weather turned warm. In order to keep the room cool enough, until we put in the window AC units, we have the curtains open for airflow. So this past week I've gotten about 7 hours of sleep a night. I haven't adjusted too well to the time change for daylight savings time, but I'm lucky enough to have a job with flexible hours so I have just been going to work a couple hours later.

As for food, I was doing lowish carb paleo (per day 1 lb of fatty grassfed ground beef, half a cup of sauerkraut, a bunch of kale, an onion, a can of salmon, a couple cups of spinach and a tablespoon or two of coconut oil, and maybe half a cup of sweet or white potato, plus liver and bone broth once a week or so), but then I upped the carbs, selenium, and iodine and started to feel much better. Lately I've been eating a lot more fish (from a fish CSA), fish stock, chicken meat, chicken stock, and chicken liver, beef and goat stock, beef and lamb kidneys and livers, oranges, potatoes, seaweed, and brazil nuts. I have been eating more variety lately, but a typical day is 4 oz leftover salmon with 3 eggs and spirulina for breakfast, an orange, a grapefruit, and 4 brazil nuts for lunch, and then grilled haddock (plus the eyes!) and a potato for dinner. Or I might have ground beef and kale for breakfast, an orange, a banana, and 3-4 brazil nuts for lunch, and then seaweed soup with dulse, eggs, and shrimp cooked in fish stock, for dinner. I often have a natural calm before bed or an epsom salt bath, and about a week ago I started supplementing with vitamin D. Maybe once or twice a week I'll have some green or black tea. And I have cacao nibs or dark chocolate a few times a week, too.

I'm 5'3'' and weigh 160 lbs. When I first went paleo I went down to 150lbs, but then my weight crept back up. I've been too tired for exercise: I tried taking up rock climbing but got so tired it seemed dangerous. I do a lot of walking, over a dozen miles a week. And lately I've been doing a lot of sprinting (about 2 blocks, once or twice a day) to catch the bus. I'd like to get back into weightlifting, but I just don't have the energy/stamina lately.

Edit: B-vitamin bloodwork results
I got my bloodtest results for serum levels of MMA, folate, and B12.

MMA: 138 nmol/L
Folate: 16.8 ng/mL
B12: 603 pg/mL

At this point (and bolstered by VB's post) I'm going to contact a TCM doc.

I'll get results back from free T3 (blood spot) and hormone panel (saliva) in a couple weeks.

76211ec5301087de2588cfe3d6bccba9

(1178)

on October 26, 2012
at 05:12 AM

Did you measure homocysteine?

76211ec5301087de2588cfe3d6bccba9

(1178)

on October 26, 2012
at 05:10 AM

Interesting. I was running with that theory until my B12 came back around 1300 with high folates. My doc wouldn't order an MMA. you had to find out through 23andme huh? Amazing

7841848bd0c27c64353c583fb7971242

(7275)

on October 26, 2012
at 01:19 AM

The adenosine-b12 has specifically done wonders for my energy levels. I've been able to exercise with a normal recover time for two weeks now, whereas I haven't been able to recover from even gentle exercise for over a year. The mental stuff is slower, but I found out the brand I was using has gone down in quality, and that may be why it stopped working for me. Freddd's and Rick Van Konynenburg's protocols on the phoenix rising are what I'm following.

7841848bd0c27c64353c583fb7971242

(7275)

on October 26, 2012
at 01:17 AM

It's a work in progress... slow, slow progress. Despite my normal B12 levels, which reflect my excellent diet, I'm functionally deficient in B12 and folate. I have some genetic mutations that block my methylation cycle, lessen my ability to utilize B12 and B9, and increase oxidative stress, giving me chronic fatigue syndrome type symptoms. I've been taking folate, methyl-b12, and adenosyl-b12 and that is helping a lot when I don't have gaps in my supple and when the brands I'm using are good quality. I highly recommend the http://forums.phoenixrising.me/ methylation forum.

7841848bd0c27c64353c583fb7971242

(7275)

on May 01, 2012
at 12:11 PM

Depressions is definitely a factor here, but not an explanatory one. In this case, it's an effect, not a cause.

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 26, 2012
at 08:51 PM

Is your skin just dry? Is it bumpy or inflamed (keratosis pilaris)? Vitamin A deficiency, which can cause skin issues, is sometimes associated with hypothyroid. Also, any digestive complaints? Bloating, cramps, heartburn? As for irritability, you may want to lose the chocolate temporarily until you're better. My experience with it is that I get a short high and then crash and become irritable.

7841848bd0c27c64353c583fb7971242

(7275)

on April 26, 2012
at 03:37 PM

Phsyical fatigue: lacking my usual "get up and go", poor recovery from exercise when I do exercise, feeling like I'm moving in slow-mo, or with extra weight. Mental fatigue: difficulty concentrating and holding a thought, beyond the usual difficulty in reading research articles for my work, reduced ability to think clearly about the tasks I need to do, difficulty writing up my results (note, I don't notice a difficulty with reading recreationally). General: shortness of breath, dry skin, low pulse, low body temp (except during ovulation), and difficulty losing weight. Also, irritability.

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 26, 2012
at 01:57 PM

Thanks! Yea I take 500mg twice a day, most days.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 08:55 PM

Thanks, Stephen! Your analysis is very helpful. My doctor hasn't tested for B12 or folate (or any of the B vitamins). I'm not sure why she didn't think of it, or why it's not offered in the panels I did get done, and I keep forgetting in the moment when I'm speaking with them. Next time I go in I'll make a note for myself to ask them to do it.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 05:09 PM

Good luck, Kyev, I hope the hematologist has some good insight for you. Are you getting enough vitamin c when you eat?

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 25, 2012
at 01:10 PM

I also tend to feel better in the afternoons, and especially in the evening. Some nights I feel wired....which is such a contrast to earlier in the day, when I can barely get out of bed (some days).

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 25, 2012
at 01:06 PM

Interesting, I've also recently had a bunch of blood work done b/c of chronic fatigue, low libido, and some IBS issues. My thyroid numbers didn't indicate any issues (although I'm waiting on my antibodies results), but my Ferritin level was 17 ng/mL (reference range 24-336). I'm cautiously taking an iron supp b/c I think I'm getting enough in my diet (it's just not absorbing, or there's internal bleeding possibly). I'm gonna see a hematologist this week who can hopefully offer some more insight.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 12:44 PM

Ah, I found some of the relevant stats from my test: MCV: 90.8 fL, Red Blood Cell Count: 4.68 Million/µL, RDW: 14.2%, Hemaglobin: 13.8 g/dL. They're all in the middle of the reference ranges, except RDW is on the higher side in the reference range.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 12:37 PM

Thank you, this is very helpful. My ferritin level was 70 µg/L, and I had no other tests for anemia done. I do often track my food for a week or two in cronometer, but otherwise I don't journal. I haven't noticed any particular patterns with it, but I attribute that to the brain fog more than the lack of patterns. If I were to say a particular time of day was better, I would say afternoon to evening is better than morning and night.

1a8287e347615e85e0cbf6930795cfcb

(439)

on April 25, 2012
at 06:00 AM

If your fatigue was primarily thyroid related, it might take some time to recover. I had a thyroid (T3) crash (T4 and TSH normal) last summer following low carb GAPS, and I am still recovering, ie. I am not yet back to where I was pre low carb GAPS. But after a period with selenium and iodine supplementation, (a small dose of pig thyroid), and adding lots of fruit, I am at least getting better. Seems like you are too :-)

05055dcbf12c81f1cce777ec365870af

(1791)

on April 25, 2012
at 04:24 AM

Sub clinical hypothyroiditis? "Normal" lab ranges are not optimal.

F0e558010a2ecb31fa37b7c491596b8e

(3850)

on April 25, 2012
at 02:31 AM

Currently, I have begun to feel better, though. My Endo actually said she thinks I _had_ an attack of thyroiditis that has since cleared up. I think that after giving up gluten, my adrenals finally crapped out after being overtaxed for so many years. I've had the best results from getting lots of rest, and pushing salt and Vitamin C, and keeping a pretty strict diet. I'm also eating modified gaps/paleo trying to heal my gut and reduce food sensitivities. It's been slow, but it's gradually working.

F0e558010a2ecb31fa37b7c491596b8e

(3850)

on April 25, 2012
at 02:27 AM

Sara, you and I seem to have a lot of the same issues going on. I was never definitively diagnoses with celiac, but quit gluten last fall and had an immediate improvement in my health, followed by a massive taking in energy in February. I finally got to see an endo and was given the "your'e fine" speech. I'm waiting to get my full results in the mail before I decide on my next step.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 02:24 AM

I had tried low carb a while back and realized it wasn't for me. I eat about one or two root veggies a day plus a couple servings of fruit... I'm usually in the range of 100-200g/day. Mostly I try to eat what sounds good to my body. I've thought about doing tanning beds, but the tanning salons near me all look terrible: any tips for finding a good one? Luckily it's getting sunny more and more, lately.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:58 AM

Best of luck to you! Hang in there!

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:57 AM

I agree, I need to keep carbs in to keep my thyroid working properly. If your adrenals are fatigued, you may need to cut back the exercise for a while. Walking and gentle yoga are great. When I'm desperate for vitamin D, I'll even go to the tanning bed and that makes me feel great! It's hard not to be depressed when you're not feeling great. Chick flicks always made me feel better:)

1edb06ded9ccf098a4517ca4a7a34ebc

(14952)

on April 25, 2012
at 01:46 AM

It seems like you're doing what's right. I say just keep doing things you like and that make you feel good and do them often. Are you going VLC? I can tell you that for me, that's the fast track to feeling mentally and physically sluggish, and not feeling too hot emotionally.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:30 AM

Thanks, that's all really interesting. I'm glad you're feeling better, now. ZRT labs has a free-T3 test, so I think I'll start there. ... I was going to see a functional medicine doctor in town some months ago, but it was super expensive. I'll look into finding a naturopath who is more reasonably priced.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:27 AM

OK, I just looked up my MTHFR snps in 23 and me and saw that I am one of the many with a deficient copy, so I ordered some folate and maybe that will help. I'd love to get my Bs tested, but my docs don't seem inclined. (By the way, does anyone else think mother-f***er every time they see MTHFR?)

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:24 AM

Thanks for the help! Yeah, I've cut way back on the leafy greens, cruciferous veggies, and sauerkraut since then. As in, I rarely eat kale nowadays and none of the other goitrogenic veggies. I'm thinking of getting free T3 tested myself (with zrt labs), since my doctor won't do it. I thought the iodine, selenium, carbs link was suspicious, too. ... Oh, and I loved that particular podcast.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:20 AM

I've done graduated exercise in the past and I either wasn't able to go slowly enough. Last week I was at the gym and worked out gently for 30 minutes (a 3x10 each of hip abductor/adductor, some medicine ball tosses, 8 girl pushups, air squats, and walking) and was exhausted and super hungry for days. ... As for the sun, I'm spending as much in the sun as I can, but the sun has been a bit spotty here lately. I am also supplementing with vitamin D and K2. ... Thanks for the well-wishes, I hope I feel better soon, too. I hope the changes aren't permanent... Depression is definitely mixed in.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:18 AM

And my t3 was low, with the t4 close to optimal, that showed that I wasn't converting it.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:17 AM

the active form of the thyroid hormone. You can take iron, selenium (not too much), adaptogens like ashwaghanda, vitamin c, trace minerals to support your adrenals and help your body convert t4 to t3. My GP is worthless, and you may find that you need to look elsewhere for help so that you can get better.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:17 AM

Haha, yes, I'm sure. It would explain a lot though, which is why I suspect my estrogen/progesterone levels are off. Two more weeks and I can do the home test for those. <3 zrt laboratories. ... about the histamine intolerance: I sneeze every time I eat chocolate, and yet like a fool, I keep eating it. It's the one thing I haven't eliminated. Stupid addiction.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:15 AM

I had heavy metals blocking my thyroid receptors. When I started the thyroid medication, it took the stress off of my adrenals and allowed them to heal. As my adrenals healed and with chelation for the heavy metals, I needed less and less thyroid medication and am now on a very small dose that I can't do without. Reverse T3 was high due to the heavy metals and chronic stress. I had to change my lifestyle and cut people out of my life that were causing my chronic stress. Sometimes your t4 will look okay but due to adrenal fatigue and low iron, your body will not convert t4 to t3 which is

Ce41c230e8c2a4295db31aec3ef4b2ab

(32556)

on April 25, 2012
at 12:03 AM

Histamine intolerance comes to mind--and are you sure you aren't pregnant?

7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 11:35 PM

I have, but I keep forgetting to ask the doctors to check it when they order me blood tests. I read somewhere that it's not a great idea to just supplement B12 without knowing you're low, so I haven't just done a supplement-and-see-if-improving thing.

97ffbac59e88bdff6495d0a9b6f70ff7

(555)

on April 24, 2012
at 11:32 PM

Sara - have you thought about b12 issues? will tell you more in email correspondence...

7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 11:27 PM

Thank you for your input. Were you completely euthyroid, or did you uncover the hypothyroidism from some other measure: free T3 was low or reverse T3 too high? Chris Kresser has written about the different kinds of hypothyroidism that don't show up with typical tests, but since my free T4 came back normal, my GP won't explore it further.

7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 11:26 PM

Thank you for your input. Were you completely euthyroid, or did you uncover the hypothyroidism from some other measure: free T3 was low or reverse T3 too high? Chris Kresser has written about the different kinds of hypothyroidism that don't show up with typical tests.

7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 08:28 PM

One interesting thing, from the allergist, that people here may find helpful: they didn't think that true food allergies would cause these symptoms (alone), and food intolerances, which *could* cause these symptoms, can't be tested. So they suggested I should just keep aware of how foods make me feel, and go with that.

7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 08:26 PM

Yeah, my gastro tested my antibodies to gluten and they're back down to the normal range, so the problem isn't from hidden gluten in my diet. He wants to do a colonoscopy to test for microscopic/lymphocytic colitis. My allergist had a few ideas. One is that my under-treated asthma could be giving me poor sleep quality, systemic inflammation, and low oxygen. So I'm taking a corticosteroid inhaler for a while to see if that improves things. Other possibilities (that they didn't think was likely) included blood-glucose regulation issues, or some sort of systemic infection.

F0e558010a2ecb31fa37b7c491596b8e

(3850)

on April 24, 2012
at 07:49 PM

Sara, any updates since you posted?

97ffbac59e88bdff6495d0a9b6f70ff7

(555)

on April 22, 2012
at 09:23 PM

Emailing you now - hope you get it

97ffbac59e88bdff6495d0a9b6f70ff7

(555)

on April 22, 2012
at 05:51 PM

Sara - I'm in the exact same position (I think you commented on one of my questions). We should get in touch and talk. I have been GF from a celiac diagnosis for 8 months as well and still am improving. Perhaps we could bounce ideas off each other.

7841848bd0c27c64353c583fb7971242

(7275)

on April 06, 2012
at 06:34 PM

I got my cortisol test back, and it's exactly where it ought to be. Now I'm even more stumped.

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:43 AM

... The first one was common among a sampling of my friends who aren't suffering from fatigue. The line scratch seems to be indicative of dry skin, perhaps? I've always had "writeable" skin, since I was a little kid. So it doesn't seem indicative of my current state.

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:42 AM

Adrenal fatigue seems more like a collection of symptoms than a real diagnosis. I've been reading up about, but I'm not sure what to make of it. For example, some of the tests you're supposed to use to know if you have it seem like things that a large percentage of people would test positive on. For example: "inability for your pupils to stay closed for long when presented with a bright light in the dark is a fairly sure sign. Another is supposed to be if a line scratched on your skin, as with a fingernail stays white for more than a couple minutes." ...

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:32 AM

Have you found anything to make you more resilient to stress?

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:31 AM

As a PhD student, I'm both exceptionally privileged with a flexible work environment and under stress. I want to make good progress with my research, but being ill has hampered my progress. Luckily my advisor is understanding about it, but we do still have times when we need to crank out some results or a paper, and my body just isn't up for that kind of push, yet. At work I pretty much just sit at the computer reading papers and writing code, with frequent breaks to move a little or go for a walk.

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:26 AM

Good to know that it can take a couple years to even out the hormone levels after going off hormonal birth control. I eat a good bit of spirulina so I'd be surprised if my b12 levels were low, but maybe my b12 is low and that's why the spirulina tastes good to me. I drink about 1 to 2 liters of water and herbal tea per day, so I stay plenty hydrated. I work sitting at a desk, but I get up a lot, and I take a couple breaks to walk, about half a mile twice during the day. Yeah, I wonder if my lunch lately has been problematic: I've been trying to eat more for lunch, even if I'm not hungry.

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11 Answers

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5
3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 24, 2012
at 11:02 PM

my TSH was about the same as yours and I was hypothyroid. I take dessicated thyroid and couldn't live without it. I would suggest visiting a naturopath. They look at optimal ranges not "normal" ranges that are based on unhealthy people. It's often out of pocket but your health is worth it. I went thru many doctors telling me I was normal but I was very sick with lead and mercury poisoning, estrogen dominance from bc pills, adrenal fatigue, vitamin d deficiency, anemia, etc etc. you sound a lot like me. Don't worry stick w it you will get better. It took me 3 years but I'm almost back to normal minus the SAD. I don't think I would have recovered without going paleo.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:58 AM

Best of luck to you! Hang in there!

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:30 AM

Thanks, that's all really interesting. I'm glad you're feeling better, now. ZRT labs has a free-T3 test, so I think I'll start there. ... I was going to see a functional medicine doctor in town some months ago, but it was super expensive. I'll look into finding a naturopath who is more reasonably priced.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:18 AM

And my t3 was low, with the t4 close to optimal, that showed that I wasn't converting it.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:15 AM

I had heavy metals blocking my thyroid receptors. When I started the thyroid medication, it took the stress off of my adrenals and allowed them to heal. As my adrenals healed and with chelation for the heavy metals, I needed less and less thyroid medication and am now on a very small dose that I can't do without. Reverse T3 was high due to the heavy metals and chronic stress. I had to change my lifestyle and cut people out of my life that were causing my chronic stress. Sometimes your t4 will look okay but due to adrenal fatigue and low iron, your body will not convert t4 to t3 which is

7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 11:26 PM

Thank you for your input. Were you completely euthyroid, or did you uncover the hypothyroidism from some other measure: free T3 was low or reverse T3 too high? Chris Kresser has written about the different kinds of hypothyroidism that don't show up with typical tests.

7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 11:27 PM

Thank you for your input. Were you completely euthyroid, or did you uncover the hypothyroidism from some other measure: free T3 was low or reverse T3 too high? Chris Kresser has written about the different kinds of hypothyroidism that don't show up with typical tests, but since my free T4 came back normal, my GP won't explore it further.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:17 AM

the active form of the thyroid hormone. You can take iron, selenium (not too much), adaptogens like ashwaghanda, vitamin c, trace minerals to support your adrenals and help your body convert t4 to t3. My GP is worthless, and you may find that you need to look elsewhere for help so that you can get better.

4
7841848bd0c27c64353c583fb7971242

(7275)

on April 24, 2012
at 08:42 PM

Here is a list of things that could lead to physical and mental fatigue (of varying explanatory power), based on the avenues my doctors and I have explored.

  • Thyroiditis (e.g. hypothyroid, Hashimoto's thyroiditis)
  • Asthma, untreated
  • Systemic inflammation
  • Microscopic colitis
  • Food intolerances
  • Pre-diabetes
  • Adrenal insufficiency (wonky cortisol levels)
  • Vitamin D deficiency
  • Wonky hormone levels
  • Sleep apnea
  • Pregnancy
  • Hidden gluten (for celiacs)
  • Vitamin B deficiencies (especially B12 and B9)

Surprisingly, none of my doctors have suggested vitamin B deficiencies.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:27 AM

OK, I just looked up my MTHFR snps in 23 and me and saw that I am one of the many with a deficient copy, so I ordered some folate and maybe that will help. I'd love to get my Bs tested, but my docs don't seem inclined. (By the way, does anyone else think mother-f***er every time they see MTHFR?)

F0e558010a2ecb31fa37b7c491596b8e

(3850)

on April 25, 2012
at 02:27 AM

Sara, you and I seem to have a lot of the same issues going on. I was never definitively diagnoses with celiac, but quit gluten last fall and had an immediate improvement in my health, followed by a massive taking in energy in February. I finally got to see an endo and was given the "your'e fine" speech. I'm waiting to get my full results in the mail before I decide on my next step.

F0e558010a2ecb31fa37b7c491596b8e

(3850)

on April 25, 2012
at 02:31 AM

Currently, I have begun to feel better, though. My Endo actually said she thinks I _had_ an attack of thyroiditis that has since cleared up. I think that after giving up gluten, my adrenals finally crapped out after being overtaxed for so many years. I've had the best results from getting lots of rest, and pushing salt and Vitamin C, and keeping a pretty strict diet. I'm also eating modified gaps/paleo trying to heal my gut and reduce food sensitivities. It's been slow, but it's gradually working.

3
121a16aded2bed8dca492d3c9662ef4c

on April 25, 2012
at 11:48 AM

Sara wrote:

Most days it feels like I'm living in molasses and my brain doesn't function well enough for my work. I do have days where I feel like normal, just enough to remind me that this fatigue thing is out of my norm, but then I sink back down into the fatigue.

I have to say, I think your doc is missing something, and it's not your thyroid.

Questions:

You said that your ferritin level was "normal". What does that mean, exactly? 300 ??g/L? 100 ??g/L? 10 ??g/L? The reference range on this varies widely by country and laboratory. (I've seen the bottom end be 20 ??g/L. That may be "normal" in the sense that it falls within 2 standard deviations of the mean, but it is unlikely to make someone feel very good.)

Did your doctor measure serum iron and either TIBC (total iron binding capacity) or transferrin?

Do the "good days" correlate at all with what you eat?

Have you tried keeping a food diary?

Last question: Does your condition change throughout the day, and if so, does it do so consistently from day to day?

Ferritin levels are not the last word on iron, because ferritin is an acute-phase protein (meaning it rises when there is inflammation, even in someone who is iron-deficient). Systemic inflammation and fatigue induced by anemia (which often goes undetected) are hallmarks of celiac disease.

As you are a person with diagnosed celiac disease and female, if I were your physician (and I'm not ;) )

  • I would suspect chronic iron deficiency.
  • I would be very suspicious of any ferritin test result, for the reason stated above, and would try to confirm adequate iron status with a serum iron + transferrin test. If transferrin is elevated, or if transferrin is weakly saturated (anything under 25% would definitely get my attention, and between 25 and 30% isn't a pass either) then that's a sign that I can't take the ferritin test at face value.

Iron deficiency is difficult to diagnose in people with celiac disease, and it is even tougher to treat. Iron (yes, even heme iron) is not well-absorbed in most healthy people, so a person with celiac has an even harder time of it.

A normal blood count can be very misleading, for a number of reasons. First, if the iron depletion has been chronic but not severe, most people will adapt and can compensate enough that the blood count doesn't suffer much. Haemoglobin is a lousy test for iron status, because it can change quickly, and by the time things get bad enough to impact the blood count and Hb values, the person has an entrenched deficiency that can take over a year to fix. Yes, you read that right.

It's easy to overestimate how much iron one absorbs with an iron-rich meal. There are lots of dietary co-factors that affect iron absorption, and things like tea or calcium supplements (especially around meals) will swab up much of the iron you get with your food.

A note on units: The units used vary, but they are all derived from metric base units and are numerically equivalent: ??g/L is the same as ng/mL.

EDIT: In response to your comments I want to add a few things, and it's better to do that here where I'll have more room.

Given your complaints I would have expected a value substantially lower than 70 ??g/L, but factor even a light inflammatory response and we may be getting there.

The RDW -- the "red cell distribution width" is telling. This measures the variance in red cell size. You have an MCV -- mean corpuscular volume -- in the normal range, but it's just that, a mean, which means it doesn't tell you the extent of the extremes. With a high RDW, it means you have more cells with extreme sizes (unusually large or unusually small), something which wouldn't be reflected in the MCV.

My take: this is a sign that erythropoesis (red cell synthesis) is inconsistent, which suggests that even if there is enough iron in storage, it may not be getting to where it is needed when it is needed. The body moves iron around a lot, and transferrin is the transporter protein. You can have enough ferritin in cells, but if transferrin saturation dips, even for only a few hours, you're going to feel it sooner or later. (Again, I'd be very curious to see the results of a serum iron + transferrin test.)

One way to conceptualize it is like the gas tank of a car that is close to empty. There is fuel in reserve, but it's at the bottom of the tank. As you put the car into a curve, the gasoline sloshes to the side, and the fuel pump sucks air. The gauge says you have enough gas, but the engine is sputtering. Back to our iron: the bone marrow spits out a bunch of overly small red blood cells until more iron is available. The count looks normal, but you have a few gimps who can't do much but sit on the bench.

This is quite apart from the fact that iron is also needed in tissue -- in muscle, for example (myoglobin), and for any number of other haeme proteins that are no less important than the obvious haemoglobin. In other words: many parties compete for what sits on the transferrin, and when there isn't enough to go around, somebody goes home empty-handed. It's not always the same people.

The role of time of day is a bit more speculative, but serum iron does have a circadian rhythm. The level peaks between 11:00 am and 2:00 pm, then declines. This is well-documented, and although nobody is totally sure why, it's a reasonable assumption that this happens because overall iron demand is highest during this time of day, which also happens to be the time most people are the most alert and active.

Ask your doctor to do those additional tests. And if you take one thing away from my answer, let it be this: don't be afraid of iron. In somebody without hereditary haemochromatosis, it takes a lot before real iron overload sets in.

Lest you think this is only about iron, the B vitamins are cofactors in many of the processes (such as erythropoesis) that depend on iron. The absorption of those can be affected in a person with celiac disease also. You said your nutrient status was normal so I'm assuming your doctor did a serum B12 and folate test already. Your diet is good, but it can take a long time for the GI tract to heal from celiac damage.

Be patient, don't give up, and good luck!

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 25, 2012
at 01:10 PM

I also tend to feel better in the afternoons, and especially in the evening. Some nights I feel wired....which is such a contrast to earlier in the day, when I can barely get out of bed (some days).

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 26, 2012
at 01:57 PM

Thanks! Yea I take 500mg twice a day, most days.

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 25, 2012
at 01:06 PM

Interesting, I've also recently had a bunch of blood work done b/c of chronic fatigue, low libido, and some IBS issues. My thyroid numbers didn't indicate any issues (although I'm waiting on my antibodies results), but my Ferritin level was 17 ng/mL (reference range 24-336). I'm cautiously taking an iron supp b/c I think I'm getting enough in my diet (it's just not absorbing, or there's internal bleeding possibly). I'm gonna see a hematologist this week who can hopefully offer some more insight.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 08:55 PM

Thanks, Stephen! Your analysis is very helpful. My doctor hasn't tested for B12 or folate (or any of the B vitamins). I'm not sure why she didn't think of it, or why it's not offered in the panels I did get done, and I keep forgetting in the moment when I'm speaking with them. Next time I go in I'll make a note for myself to ask them to do it.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 12:44 PM

Ah, I found some of the relevant stats from my test: MCV: 90.8 fL, Red Blood Cell Count: 4.68 Million/µL, RDW: 14.2%, Hemaglobin: 13.8 g/dL. They're all in the middle of the reference ranges, except RDW is on the higher side in the reference range.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 12:37 PM

Thank you, this is very helpful. My ferritin level was 70 µg/L, and I had no other tests for anemia done. I do often track my food for a week or two in cronometer, but otherwise I don't journal. I haven't noticed any particular patterns with it, but I attribute that to the brain fog more than the lack of patterns. If I were to say a particular time of day was better, I would say afternoon to evening is better than morning and night.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 05:09 PM

Good luck, Kyev, I hope the hematologist has some good insight for you. Are you getting enough vitamin c when you eat?

3
1a8287e347615e85e0cbf6930795cfcb

(439)

on April 25, 2012
at 01:19 AM

There is a couple of things you say that leads me to think you might have a thyroid problem:

  1. "(...) then I upped the carbs, selenium, and iodine and started to feel much better."

This would be a typical sign that you might be hypothyroid, possibly a T4 to T3 conversion problem in the liver.

2 "I've had TSH tested 3 times (2.2, 1.8, and 2.15 mIU/L), all within the normal range. I had Free T4 tested (1.2 ng/dL), also normal."

The TSH, while in normal range, is still a bit high. Under 1 would be better. But the most important test is missing - free T3. You can have normal T4, but low T3.

If you do have a thyroid problem, you should probably take it easy with goitrogenic foods for a while. You said you were eating "half a cup of sauerkraut, a bunch of kale (...)" - this was probably not helping if you have/had a thyroid problem. This podcast at 29:36 min is helpful:

http://chriskresser.com/chris-masterjohn-on-cholesterol-and-heart-disease-part-3

1a8287e347615e85e0cbf6930795cfcb

(439)

on April 25, 2012
at 06:00 AM

If your fatigue was primarily thyroid related, it might take some time to recover. I had a thyroid (T3) crash (T4 and TSH normal) last summer following low carb GAPS, and I am still recovering, ie. I am not yet back to where I was pre low carb GAPS. But after a period with selenium and iodine supplementation, (a small dose of pig thyroid), and adding lots of fruit, I am at least getting better. Seems like you are too :-)

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:24 AM

Thanks for the help! Yeah, I've cut way back on the leafy greens, cruciferous veggies, and sauerkraut since then. As in, I rarely eat kale nowadays and none of the other goitrogenic veggies. I'm thinking of getting free T3 tested myself (with zrt labs), since my doctor won't do it. I thought the iodine, selenium, carbs link was suspicious, too. ... Oh, and I loved that particular podcast.

2
7cf9f5b08a41ecf2a2d2bc0b31ea6fa0

on May 01, 2012
at 10:33 AM

Don't underestimate depression, it can manifest itself more physically than mentally and drain the hell out of you

7841848bd0c27c64353c583fb7971242

(7275)

on May 01, 2012
at 12:11 PM

Depressions is definitely a factor here, but not an explanatory one. In this case, it's an effect, not a cause.

1
76211ec5301087de2588cfe3d6bccba9

(1178)

on October 26, 2012
at 12:33 AM

Any updates??? Your story sounds like mine :(

76211ec5301087de2588cfe3d6bccba9

(1178)

on October 26, 2012
at 05:12 AM

Did you measure homocysteine?

7841848bd0c27c64353c583fb7971242

(7275)

on October 26, 2012
at 01:19 AM

The adenosine-b12 has specifically done wonders for my energy levels. I've been able to exercise with a normal recover time for two weeks now, whereas I haven't been able to recover from even gentle exercise for over a year. The mental stuff is slower, but I found out the brand I was using has gone down in quality, and that may be why it stopped working for me. Freddd's and Rick Van Konynenburg's protocols on the phoenix rising are what I'm following.

76211ec5301087de2588cfe3d6bccba9

(1178)

on October 26, 2012
at 05:10 AM

Interesting. I was running with that theory until my B12 came back around 1300 with high folates. My doc wouldn't order an MMA. you had to find out through 23andme huh? Amazing

7841848bd0c27c64353c583fb7971242

(7275)

on October 26, 2012
at 01:17 AM

It's a work in progress... slow, slow progress. Despite my normal B12 levels, which reflect my excellent diet, I'm functionally deficient in B12 and folate. I have some genetic mutations that block my methylation cycle, lessen my ability to utilize B12 and B9, and increase oxidative stress, giving me chronic fatigue syndrome type symptoms. I've been taking folate, methyl-b12, and adenosyl-b12 and that is helping a lot when I don't have gaps in my supple and when the brands I'm using are good quality. I highly recommend the http://forums.phoenixrising.me/ methylation forum.

1
D460f31ffa93f2b244ee66ba966574b9

(153)

on April 26, 2012
at 01:55 PM

Sara,

Maybe you already said something in the comments section, but what other symptoms are you experiencing? Is it just fatigue?

D460f31ffa93f2b244ee66ba966574b9

(153)

on April 26, 2012
at 08:51 PM

Is your skin just dry? Is it bumpy or inflamed (keratosis pilaris)? Vitamin A deficiency, which can cause skin issues, is sometimes associated with hypothyroid. Also, any digestive complaints? Bloating, cramps, heartburn? As for irritability, you may want to lose the chocolate temporarily until you're better. My experience with it is that I get a short high and then crash and become irritable.

7841848bd0c27c64353c583fb7971242

(7275)

on April 26, 2012
at 03:37 PM

Phsyical fatigue: lacking my usual "get up and go", poor recovery from exercise when I do exercise, feeling like I'm moving in slow-mo, or with extra weight. Mental fatigue: difficulty concentrating and holding a thought, beyond the usual difficulty in reading research articles for my work, reduced ability to think clearly about the tasks I need to do, difficulty writing up my results (note, I don't notice a difficulty with reading recreationally). General: shortness of breath, dry skin, low pulse, low body temp (except during ovulation), and difficulty losing weight. Also, irritability.

1
1edb06ded9ccf098a4517ca4a7a34ebc

on April 24, 2012
at 11:55 PM

Start exercising doing a graduated exercise program. Start slowly and build up. go for walks, then go run sprints on the beach or up and down a grassy hill, then start lifting some weights with dumbbells. OH, and getting at least an hour a day in the sun. I really hope you start feeling better soon. I think this will help. Are you depressed? Sometimes that can cause people to feel mentally and physically sluggish.

3e3b1b75cb414c5c3dbed53e3c42edfa

(220)

on April 25, 2012
at 01:57 AM

I agree, I need to keep carbs in to keep my thyroid working properly. If your adrenals are fatigued, you may need to cut back the exercise for a while. Walking and gentle yoga are great. When I'm desperate for vitamin D, I'll even go to the tanning bed and that makes me feel great! It's hard not to be depressed when you're not feeling great. Chick flicks always made me feel better:)

1edb06ded9ccf098a4517ca4a7a34ebc

(14952)

on April 25, 2012
at 01:46 AM

It seems like you're doing what's right. I say just keep doing things you like and that make you feel good and do them often. Are you going VLC? I can tell you that for me, that's the fast track to feeling mentally and physically sluggish, and not feeling too hot emotionally.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 01:20 AM

I've done graduated exercise in the past and I either wasn't able to go slowly enough. Last week I was at the gym and worked out gently for 30 minutes (a 3x10 each of hip abductor/adductor, some medicine ball tosses, 8 girl pushups, air squats, and walking) and was exhausted and super hungry for days. ... As for the sun, I'm spending as much in the sun as I can, but the sun has been a bit spotty here lately. I am also supplementing with vitamin D and K2. ... Thanks for the well-wishes, I hope I feel better soon, too. I hope the changes aren't permanent... Depression is definitely mixed in.

7841848bd0c27c64353c583fb7971242

(7275)

on April 25, 2012
at 02:24 AM

I had tried low carb a while back and realized it wasn't for me. I eat about one or two root veggies a day plus a couple servings of fruit... I'm usually in the range of 100-200g/day. Mostly I try to eat what sounds good to my body. I've thought about doing tanning beds, but the tanning salons near me all look terrible: any tips for finding a good one? Luckily it's getting sunny more and more, lately.

1
C2c508ceb01081c15f7c04f12d62f5e1

(55)

on March 23, 2012
at 03:49 AM

Anxiety and stress? This combo destroys me more than any intense cardio session

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:32 AM

Have you found anything to make you more resilient to stress?

1
F4d04667059bc682540fdfd8b40f13a7

on March 23, 2012
at 02:58 AM

Have you looked at Adrenal Fatigue?

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:42 AM

Adrenal fatigue seems more like a collection of symptoms than a real diagnosis. I've been reading up about, but I'm not sure what to make of it. For example, some of the tests you're supposed to use to know if you have it seem like things that a large percentage of people would test positive on. For example: "inability for your pupils to stay closed for long when presented with a bright light in the dark is a fairly sure sign. Another is supposed to be if a line scratched on your skin, as with a fingernail stays white for more than a couple minutes." ...

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:43 AM

... The first one was common among a sampling of my friends who aren't suffering from fatigue. The line scratch seems to be indicative of dry skin, perhaps? I've always had "writeable" skin, since I was a little kid. So it doesn't seem indicative of my current state.

1
65bf1ca7071028018c6d8305d0ddcd76

(3049)

on March 23, 2012
at 02:53 AM

I was on tricyclen for over 10 years and when I got off it I felt really tired and 'hormonally different" for a couple of years. I'm glad you're looking into this with some qualified professionals- which I'm not - but some things that worked for me include a b ( b12 is especially important). I really love the Prairie Naturals liquid B complex. Are you properly hydrated? This is important as well.

Can you tell us more about your activities? Do you work at a desk, or in a more physical environment? Tell use more what your day looks like.

I also find my body is in peak condition when I eat until satiated, but not "full". You could try diminishing your meals slightly to see if that changes your energy levels; that said, your lunches seem a little light on protein and fat. Maybe have 2 eggs with salmon for breakfast and hard boil the third for lunch?

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:26 AM

Good to know that it can take a couple years to even out the hormone levels after going off hormonal birth control. I eat a good bit of spirulina so I'd be surprised if my b12 levels were low, but maybe my b12 is low and that's why the spirulina tastes good to me. I drink about 1 to 2 liters of water and herbal tea per day, so I stay plenty hydrated. I work sitting at a desk, but I get up a lot, and I take a couple breaks to walk, about half a mile twice during the day. Yeah, I wonder if my lunch lately has been problematic: I've been trying to eat more for lunch, even if I'm not hungry.

7841848bd0c27c64353c583fb7971242

(7275)

on March 23, 2012
at 11:31 AM

As a PhD student, I'm both exceptionally privileged with a flexible work environment and under stress. I want to make good progress with my research, but being ill has hampered my progress. Luckily my advisor is understanding about it, but we do still have times when we need to crank out some results or a paper, and my body just isn't up for that kind of push, yet. At work I pretty much just sit at the computer reading papers and writing code, with frequent breaks to move a little or go for a walk.

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