It’s been a while! I’ve been out of commission on many days over the past 4 months, and haven’t been writing much. I’ll tell you why, as I think it’s a good lesson for all of us about the incredible importance of blood testing.
In a post a while back, I told you that I thought all of my health maladies (weird neurological stuff, fatigue, and serious depression) were due to stress. Just plain old stress of having just had surgery, moving around the country constantly, changing career paths, family, etc. I thought it would all go away if I just chilled out.
Weird Stuff Still Happening
Well, months have passed since then, and it hasn’t just gone away. In fact, I still have occasional tingling and numbness in my hands and feet, my muscles twitch like crazy, I have these weird flashes of light in my eyes, I’m tired as heck some days, and the depression. Oh, the depression. Lots of crying around here…
It all started two weeks after my surgery when I was tingling all over my body. I’d feel weird surges of electricity in my hands, face, legs, feet, butt, and arms. Sometimes it felt like somebody was tickling me and then it would just stop (or not). Sometimes my leg would go numb.
I went to a neurologist, who told me he’d never seen anything like it and that I should get my B12 tested “because people in Boulder often take too much B12.” He also said he’d give me some anti-depressants if I wanted them. I went to a GP who told me, after an extensive physical exam and an MRI of my brain, that he had no idea what was wrong. But I could have some anti-depressants if I wanted them. I went to the ER thinking I was having a blood clot (because my legs were feeling so weird). They told me that it was not a blood clot, but they had no idea what was going on. They took some blood and checked my white and red blood cells and sent me on my way with no answers.
I went to my naturopath, who’s helped me so much in the past. He took a little blood, testing my thyroid and a few other markers, said he didn’t see anything and that it was probably the anesthetic making its way out of my body.
The tingling didn’t stop.
Then the muscle twitching started. My hair started falling out. Then the ocular migraines and weird flashes in my eyes. Then a few days a week I was so tired all I wanted to do was sleep. I was dizzy and confused and felt a little crazy. Then I became so overwhelmed that I was having panic attacks and anxiety/depression almost every day. It was the worst.
Finally, just a couple weeks ago, I went back to my naturopath in desperation. “Please test me for everything,” I begged. “And in the meantime, please give me something so I feel less anxious about all of this.” He gave me some B vitamins, SAM-e, 5-HTP, St. John’s Wort, and I felt a little better within a couple days. I was still having symptoms almost every day, but I could handle them a bit better some days without so much worry. Other days not so much.
Then we got my test results back.
All along I had a feeling it was just something simple we were missing. Something big but simple. Well, it turns out that I’m extremely anemic – the kind that comes from iron and ferritin deficiency. Incidentally, the symptoms of anemia are:
- tingling in the hands and feet
- muscle twitching
- brain fog and confusion
- feeling light-headed
- hair loss
- dizziness, among other things
I also have no detectable testosterone in my blood. And my thyroid markers are off (functionally high TSH, low reverse T3).
So… that would explain all of the “unexplainable” symptoms I’ve been having.
Why Is This Happening to Me?
After all, I take such care with my diet, I exercise regularly, I get enough sun and relaxation time, and my life is generally really good. Why is this happening?
I eat a lot of meat, so you’d think that my iron levels would be high. However, you only get nutrients out of your food if you’re absorbing them, and it’s possible my HCl and enzyme levels are insufficient. It’s also common to become anemic after major surgery (I had shoulder surgery). I also looked back at my records and found that I’ve been in the normal low range of ferritin and iron for a while, and that’s probably partly because my periods are rather heavy.
The testosterone thing?
I’ve been reading up on it, and it turns out that iron deficiency is often found with low testosterone, so I don’t know which one affected which, but it’s possible that as my iron goes up, my testosterone will rise, too. Also, thyroid levels can affect testosterone, so that might be throwing things off, too.
I don’t think it matters how diligent you are about your diet and exercise: everyone is susceptible to thyroid weirdness if they’re stressed out. And stress has been my middle name these last few years. Plus, I think at times I’ve exercised TOO much, and not eaten enough because, well, I’m a climber and we can sometimes get obsessive about our weight when we have big goals.
Is all of this being caused by something bigger and deeper? Well, my naturopath is testing me for a mold intolerance (he swabbed my sinuses and took some indicative blood tests) and we’re still waiting on the results of those. Could be that I have something that’s wreaking havoc on my liver and immune system.
I’m going to see him again in 2 weeks, and I’ll be put on a grand plan. For now, I’m taking lots of iron in many forms, and things are already improving after 5 days. Fingers crossed they keep getting better and better.
I started seeing an Emotional Freedom Technique (EFT) therapist named Teri Mattingly, and she has single handedly changed my life. EFT is also called “tapping”, and basically you tap on certain acupressure sites on your body while you acknowledge (out loud) the stress/pain/anxiety you’re feeling, and then systematically let it go by accepting, forgiving and gaining a deeper understanding of the situation.
Sometimes just acknowledging what’s going on and saying it out loud can take the charge away from a situation. I haven’t had a panic attack since our first session and that is completely because of the tools I gained from her. I highly recommend her, and she works exclusively over the phone, so you can see her from anywhere.
Moving On From Here (And What You Can Take From This)
So. That was a lot. It feels a little embarrassing telling you all of this, since I’m a health professional and I should have my shit together, right?! Well, that’s just not the way it works. We’re all human and we all deal with our health in one way or another I guess.
If anything, this is teaching me even more about the importance of blood testing right away when things go wrong and being more adamant with doctors about running them. If that first GP, the ER doc, the neurologist, or my naturopath had just run a big blood panel on me – the kind that they do for any annual exam – they would’ve found this, and I wouldn’t have suffered for the past 4 months.
Also, from this I’ve learned better how to manage my stress levels, and to be nicer to myself (in the form of taking naps when I need them, lowering my expectations for myself, and trusting that this, too, shall pass).
I hope that this helps you in some way: that’s really why I wrote it all out. I want you to know that if you’re having weird health issues and nobody can tell you why, keep pressing. Don’t just take the anti-depressants and call it good (they seem to be really attached to their anti-depressants in the medical world). Keep pressing until you find answers. Find a doc who will actually do a thorough review of you and your blood.
If you have a similar story, I’d love to hear about it! And if you’ve gotten this far, thanks for reading this whole thing!
WOW!! Neely! What a crappy past months you’ve had! I feel for ya! I too have been in your boat on and off for past 3 years! I’m so happy to read your getting answers and feeling much better! I’ve had all your symptoms but in very small instances and on and off … Except now and since September of 2014 I don’t have periods!!! Not pregnant! 34 years old. And I get terrible hot flashes and night sweats. Plus I’ve been diagnosed with Hashimoto’s thyroiditis and my testosterone and progesterone have been low for 2 years and have not come up with all the hormone creams and maca root I’ve been taking. So I quit using hormone creams but still take the maca root. Been on paleo for years since I got sick. Have had the run around with many doctors. Love my naturopath but I always feel like she’s missing something that could be so simple. I guess I just need answers too. My hope is that I can start getting some real help… I don’t want to take up too much room here with all the details but if anyone has any recommendations or has experienced similar issues if really like to know what they did or are doing to help them. Maybe a diagnosis is out there too. Thanks Neely for your honesty. Your the reason I’m aspiring to become a nutritional therapist myself.
Any guidance here would be much appreciated!
Hi Athena – Sounds rough! I’m really sorry you’ve had such a long road with this. I don’t know what your answer is, but I can say that after further investigation, my naturopath found that I have what’s called biotoxin illness. I have mold in my system from who knows how long ago, and it’s potentially affecting everything, including my hormones. It’s very common for hormones to be thrown off by mold toxicity. I’d contact someone who specializes in mold and lyme’s disease and see if you can be tested for those things. Not sure where you are, but my naturopath is Eric Dorninger in Boulder if you want to try to get in with him. Best wishes to you.
I too have what I call “bad blood”. Been anemic since I was 12 and now am 57. I get iron infusions since I cannot tolerate taking iron by pill form. I also have thyroid issues, take does of 150, also have B12 issues so get a monthly shot. And now, they say I am low on vitamin D…cannot wait for the next letter of the vitamin alphabet! I recently had a colonoscopy since I went to a new Dr. of course they found nothing and next week I will have a scope of my esophagus and upper intestine. I am trying to tell them I have been anemic since I was 12, and if I had been bleeding or something bad is going on I should have been gone by now! but the tests continue, I do not want to be stupid and miss something either. Among the symptoms you named, when I get low on iron I am a BIG ice eater. Once I get my iron up, I quit eating ice.
I can sympathize with your frustration over getting medical people to look beneath the surface and do the right tests to help you. I am at an age (71) where doctors seem to just want to “maintain” my health and I am struggling with finding a provider who will work with me to find answers so I feel better and have more energy. I recently started the Paleo diet and feel much better but still feel like I need guidance with ways to maximize my health. I don’t know whether to find a Nutritionist, a D.O. or another provider.
I regard to your search for answers about mold, I know of a family who, when their children were having bad health problems, found out their house was full of mold. The house actually had to be demolished and they moved to Arizona. The mom, Andrea Fabry, has a website, momsAWARE, where she discusses a lot of these issues and helps others with similar problems. She is also on the radio with her husband, Chris, every so often discussing her strategies for coping with these issues. Hope maybe this will help.
Neely, I’m so glad you wrote this. I had to re-read the list of symptoms for anemia a couple times before I had an “ah hah”, myself.
You see, I’ve been experiencing adrenal fatigue (AF) on and off for the past 3 years. Last spring, I dialed-in some elements and got it handled. …or so I had thought.
Let me back up for a moment. One of the items I found to be key in my diet/”supplement” regimen is liver powder. Granted, that’s a food not a supplement. However, I can’t stomach the taste. So, I manually put it into capsule form. This way, it’s just the powder and a capsule…no other ingredients. I can and do take many capsules – 12 a day. That equals 1 Tbsp of the liver powder, roughly.
A couple months ago, my stress levels went through the roof and well into the celestial skies. Along the way, I ran out of my liver capsules and hadn’t had the time to make more. This went on for at least a month, perhaps 6 weeks. Sure I can order them already prepared, but the overall price when compared to doing it myself is 5x’s the cost. So, I put it off thinking I’d find the time to get it done in a couple of days. Over month went by using that thinking… Oops.
Then, these symptoms started to come back…a little thing here, a little thing there. I thought it was the AF, but I was also experiencing issues that I couldn’t attribute to the AF such as the horrid anxiety. Never had it like that, previously. It was awful! I did finally relent and order some of the pills while also ordering more grass-fed, Argentine-beef, liver powder. Within two weeks, I started to notice that I was feeling a bit better. Usually takes 6 weeks to really notice a difference. (Gee, that’s funny. Your blood cells are replaced entirely every ~45 days. Hmmm…)
Then, I read your post. I read and re-read the symptoms for anemia. LIGHT BULB.
The symptoms I was recently attributing to AF might not really have been AF but anemia. You know what? I too have also had low levels of Iron & Ferritin in my blood for years, ever since I was a teen actually. (I’m now forty-something.) “Borderline anemic” I’ve been called. Like you, it also didn’t matter if I was a big meat-eater or if I wasn’t. Furthermore and also like you again, I have had heavy periods for years. (Some have been so bad that I called them “crime scenes”. Yeah…not a positive way to label it but accurate to convey the level at which my body let loose each month.) I’ve tried many, many different brands of supplements to get my levels up. Most did not work and gave me constipation. No fun! Lastly like you, I’m also a very active person with an extremely busy life. You further stress your body with the rock climbing. I furthger stress mine with the road and mountain biking I do.
Last year when I added the liver powder to my diet, my periods became more normal-like. (…and riding my bikes became easier/faster/more enjoyable, too!) After reading your post just now, I realized that the liver powder has been helping the anemia, greatly. I had only been focusing on the liver powder from the standpoint of all the great natural b-vitamins I was absorbing. [From my experience, vitamin B—the full spectrum—is a major factor in healing AF.]
Last month after being off the liver powder, my cycle was on the heavier side. The one I’m experiencing now after resuming the liver powder intake is lighter, again.
Thanks to your post I’m now realizing that the “borderline anemia” I’ve dealt with for years was an unrecognized issue in the over all adrenal fatigue experience. Perhaps, it was the majority of it? Of that, I cannot say for sure. I never had my blood tested for anemia or the other items you mentioned during the worst of the AF. I did keep getting some gut instincts to get blood tests done but ignored them. (Shame on me for ignoring those internal prompts!)
Neely, when you go back to your naturopath, you might ask him about adding liver powder to your diet. If you’re interested from whom I puchase the items to make my own capsules or the brand I buy that offers them already made, of equal quality and no added ingredients, I’ll be glad to share it. Btw, filling your own capsules is easier and faster than you might think. (FYI, I get no benefit from doing so, only the internal feeling of warmth from helping another find something that hopefully works for them.)
Thanks again for sharing your experiences! I’ve started to learn that when we share our “flaws, mistakes and insecurities”, we helps others realize they are not alone because we all have issues of some sort. Our society’s unspoken mode of operation of “being strong”, “looking good/perfect”, “being brave by going it alone” isn’t helping anyone. It’s only adding to the problem because folks (especially women) think we’re the only ones having “___” problems. That leads us to think there’s something deeply wrong with us if we’re the only ones. There isn’t. We just need to let go of behaviors, beliefs and facades that are’t serving us and show ourselves as we truly are – mere humans who shine with our brilliant and welcoming IMperfections.
…so says the gal (me) who has spent a great deal of her life dealing with the issues of perfectionism…and still working on them.
Again, great post. …and no apologies necessary or allowed. You are being you and sharing your truthful and thus helpful story with us.
I look forward to reading how things go in two weeks! My best to you, and I hope your road to healing is smooth and easy.
PS – EFT is great, and I highly recommend it as well. (No, folks. I’ve never met Neely and only started reading her stuff a few months ago.) I call upon Sheri Baker in Florida. She has helped me tremendously. I would advise those who are looking at this technique to find a practitioner that melds with you, personally. Sometimes, people don’t mesh well together. So if you’re uncomfortable in some respect with who you are using, try another. B/c when you find the right person, it makes all the difference in the world!
Thank you for sharing this, Elizabeth! This is what I wanted – for other people to share, too, so we can all learn from each other. I would love to know the process you use to make your liver capsules, as I can’t tolerate the taste either (unless it’s in liverwurst with another meat added to it and lots of condiments 😉 And I’d love the name of the company you use. Thanks again for your wisdom, kindness, and bravery here!
I’m happy to share all of that information. Would you like me to post it here or send it via a private email? As you can see from above, I can be a little “long-winded” when I get in front of a keyboard.
Either way, I’ll do my best to write something up by tomorrow, but it might be Friday before I can get to it. Wonky schedule and all!
Elizabeth – Here would be great. I’m sure others would love that information, too. Long winded is fine with me with all of this stuff. The more detail the better! Thank you
Elizabeth: I didn’t see your follow on post with info on where to purchase the liver powder and how to make capsules. I suffer from AF too. Any advice on how to deal with it would be most welcome
I swear! I haven’t forgotten. Still have this on my mind. It’s my horrendous schedule that’s kept me from posting. We’re taking a much needed vacation this upcoming week. Just booked a spot 30 minutes ago. So, I’ll have time to post more info in a few days. Till then, here’s the link to the liver capsules I buy when I don’t have time to make my own. There’s nothing added to them. Just liver powder and vegetable cellulose, which is from what the capsules are made. (Last time I looked, that veggie cellulose is corn-free.)
It’s $19.95 and gets you 120 capsules.
Here’s the capsule machine – brand/manufacturer. Make sure you’re getting the 00 capsule size.
However…directions are not good on how to use. So, I’ll put up a post next week on how to do them. I’ve come up with a system that when I describe it might sound “OCD”…but the pattern is very important to both keeping frustration and mess to a minimum…and maximizing your time. Also, I bought these on Amazon through Amazon themselves. This post is by a separate seller. So, you can look around to see if you can find it cheaper elsewhere, if you want.
Next if you type into the search box on Amazon “00 capsules” [those are zero’s btw], you’ll come up with several options. I buy the 1000-count bags because is the best bang for your buck. It’s up to you if you want to choose vegetable cellulose or the gelatin capsules.
Oops! Gotta run again. I’ll post later or after we’re on vacation the link to the liver powder I buy. (Best price, nice woman running the site, and clean powder.) TTYS!
(Please do pardon any typos you find. Am in a rush to post this and don’t have the time to re-read.
Thanks for sharing. Get well soon.
Thanks for sharing! You never know who you will help by putting yourself out there. Hope you’re feeling better soon!
Appreciate your transparency with your medical issues Neely. Despite my medical background in traditional medicine I have dealt with the same problems but you should also be tested for Lymes by an ILADS associated doctor–you spend so much time outdoors and many of us with chronic Lymes have no memory of a tic bite.
I am sorry for all you are going through. Very similar experience here. I am a distance runner and a few months back I went the nearly the identical thing. My issue were environmental allergies. I am severely allergic (severe anaphylactic reaction on testing) to oak, orange and pine pollen. The stress of this season being so long and going from one to the other is succession threw my body into severe adrenal fatigue. Everything went haywire and I have always struggled with anemia. For me part of my solution is a product called Blood Builder and liquid iron and I am entering into a twice weekly injection program to help increase my immunity to my stressors.
Neely, I know your struggle. As a runner and being full clean paleo I couldn’t understand and thought I was going through menopause or something. I was terrified I was going to die at some points. It will get better quickly. Keep going forward and you went through this for a reason. All my very best to you and thank you for being strong enough to post this and help others see it is critical to chase the answers. Gina
So glad you’re feeling better. Hope you can get back to climbing soon.
Mold is my 4 letter word, had to comment.
The short story is: when I retired, I put almost 50% down on a condo, did all the legals, etc. It was freshly painted, great area, blah, blah. I’m allergic to cats, so had them pull the carpets as part of the closing deal. It wasn’t cat, it was mold. My insurance covered $10,000, it cost >$50,000 to gut and remediate. I lost everything and had to walk. Rest of the details are as sordid. The attorney, Bank of America lies and deception, on and on. Eight years later, I still have some issues.
Moral of story: Ask the City/County Building Inspector about the building (he would have told me to run), and for a list of recommended building inspectors, don’t just rely on one who has a license.
Secondly, hire a certified mold inspector who does air quality and other testing, preferably one with a degree in Environmental Engineering, vs one with a certificate. Get a guarantee.
Did you look into Lyme? Have you ever been bitten by ticks? Those symptoms could all be related to Lyme and co-infections as well. Depression/anxiety are symptoms especially related to the co-infection Babesia. Take care and thanks for writing this blog. It’s excellent to be so transparent.
Thanks for sharing. It is so important to find a doctor who is willing to work with you. I have been struggling for several years with Graves disease, and finally had my thyroid removed in July of 2013. All went well for about 2 months. The strange heat surges and mini panic attacks stopped after surgery, but returned after about 3 months. My weight soared, gaining 35 pounds in 18 months. I feel horrible a lot of the time.
I have gone to a Paleo gluten free diet, which helps. I have found a Dr who is really listening to me, and has started a battery of tests, one of which is testing my blood glucose level every single time I have a heat surge.
( not hot flashes, I’m 7 years post menopausal). I’m beginning to see a pattern as to time, intensity and duration of these attacks, as well as the level of blood glucose. Nor sure what it all means, but hoping to sort that out the next time I see my doctor.
You might want to check your calcium levels, as low calcium can cause tingling sensations on the surface of your skin too.
Thanks for caring so much for others.
I hope you feel better really soon!
Went through something similar with my 12 year old son; doctors were quick to offer mood stabilizing drugs, etc. It just didn’t feel right, and I opted to try to help him through diet (gaps, etc). After, honestly, years of suffering we found a naturopath who diagnosed his anemia, etc. and the underlying cause was two separate tick-borne illnesses – anaplasma and bartonella. He didn’t have Lyme, but the symptoms can be similar. Thank you, so much, for sharing your story. You are a true healer to give so freely of yourself.
Thankyou for this post! I find this kind of information (and the way you presented it) much more interesting than the endless posts about ‘do this and feel great’, a persons personal experience is worth a lot more. Thanks!
Have you ruled out MS? The vision and the tingling made me think of that first.
Joelle – That was actually the first thing we DID rule out with a brain MRI back in December. That’s what I was afraid of at first, too.
Please get your Vit D level done as well and as you probably know just being in the low end of the “normal” range is not enough Vit D. So many providers forget how important Vit D is. Hopefully getting your thyroid back in normal range will make you feel better also.
Keep us posted…and I’ll keep you in my prayers.
Lisa – Thanks for looking out! Yep, my D is at 68 – the highest it’s ever been. So I’m all good on that front.
Neely, You might want to push your Vit D level up a little more. My nutritionist wanted mine between 80-100. It’s now 95 and she’s happy. Just a thought. Take an extra dose once or twice a week. Best of luck to you. In my prayers!
68 is too low for great health. I’ve also been told to get up over 100.
Tory and Lisa – Don’t worry: I’m not stopping the vit D supplements (or my precious time in the sun). I’ll get it up a bit higher!
Neely, I am SO glad you have gotten some answers. I have dealt with similar things that all started around the time I turned 50. I am now 53 and have had some success but not completely. I was first diagnosed with low thyroid 3 years ago. I take 15 mg. of armour thyroid. I had the same symptoms as you! That worked for about 6 months and then it all came back. I had my blood tested and this time it revealed low ferritin (iron) levels due to heavy periods. I started iron and raised it from 9.5 to 77 over 6-9 months. Then, the symptoms came back again. With my thyroid and iron levels okay my chiropractor took x-rays and told me my body was filled with inflammation and told me to start eating Paleo. I did that and felt better within days and it continued for 7 months until recently when I went on hormone replacement therapy to try and help my heavy periods. Now for the last two weeks all my inflammation symptoms are back. I’m so discouraged… My doctor is having me stop the patch for a week to see if that helps. I am really hoping to get some relief and some answers. It is so encouraging to see that you have gotten better! Thank you so much for sharing!
I’m very interested in the mold intolerance testing – how and why did the doctor decide to do this test and what exactly is it?
I feel your pain and hope you find all the causes so you can finally recover completely! I can’t tell you how much I appreciate you telling your story. We all struggle for excellent health and you have shown us one small mistake or one problem can have enormous effects.
Valeta – thanks for your kind words To be honest, I don’t really know the full extent of it. He’s studying with the guy who wrote the book Surviving Mold and he believes it’s a problem of epidemic proportions, especially in Boulder because of the recent huge flood. So what he did so far is take some blood, as I mentioned, and there are apparently some markers that show you have a “biotoxin illness”. That might be mold, Lyme’s disease or something else. They can apparently tell which one you have with a brain MRI through NeuroQuant, which I have yet to do. He also swabbed my sinuses (he put a very long swab up my nose) to see if I have staph or mold in there, which is treatable. Oh, I also did a test in my house for mold through http://mycometrix.com/, which will tell me if my house has a lot of mold in it. I’ll keep you posted on all of this – I’m sorry I don’t know more.
Hi Neely, thanks for sharing. A good friend of mine also suspected mold problems and began drinking soil conditioner (at the recommendation of his naturopath). After years of having similar problems to the ones that you describe (plus lots of itching at different times of the year), it was finally determined that he has Lymes disease – I noticed a couple of other folks have asked you – have you been tested for it?
Alicia and everyone else concerned about Lymes – Yep, I’m being tested for it. My naturopath is very concerned about that and that’s why we’re doing a brain MRI and a bunch of other testing to see what’s going on.
Thanks. That was interesting. And you’re allowed to be human!
I’m so glad you told your story. My boyfriend’s son is on antidepressants and I’d love him to get off of them or at least eat better so that he can reduce the dose. So I totally get what you were speaking about. I’m a nutrition coach so I can help him.
I hope you continue to feel better.