Childhood symptoms predictors of later autoimmunity?

[Robin.booboo]

WOW - I have the constant yawning problem too! I have researched quite a bit on that and have found it best described as "Air Hunger." That started for me when I was about 30 and in training for a figure competition, on a strict training diet and exercise regime, and I wondered at the time if it was somehow diet related, but I have never been able to pin it down since then. That strict diet was mostly protein and very little carbs. It happens all the time and is worse if I am stressed and have not slept well.

My other unexplained physical issues, that I can think of are:

1) Alopecia -A bald spot, developed at age eighteen or nineteen, on the crown of my head. Eventually removed via scalp reduction, after trying everything else for a decade, including micro-grafts (hair transplants).
2) Itchy rash on lower legs/shins. Other random rashes, including rash reactions to penicillin/amoxicillan and also the sulfas.
3) Migraines and aural migraines. I had awful migraines every week or so as a child, as an adult I get only one or two bad ones a year, but now I get aural (visual) migraines which I did not get as a child. No pain, usually with the aural migraines, just visual disruptions. This does run in my family, on both sides.
4) A bunch of allergies that have just developed in the past few years. I am now allergic to pretty much everything they regularly test for except for the molds.
5) (Added after re-reading earlier posts in the thread) I also have the very easy bruising and my normal blood pressure used to be around 120/80 but the past six months or so it has been in the 105/75 range. I also had a low white blood cell count when they tested me while I was trying to get diagnosed, so they re-tested me and then it was a bit higher, so they decided to just monitor and have me back in a month.
6) Another thing I forgot to list until I read back through the thread again... Yes! I have a tremor. Most of the time it is not too pronounced, but when I exercise and put stress on my body, or if I don't get enough sleep, or if I use an inhaler or take in caffine, it becomes much more pronounced. Depending on circumstances, it is sometimes difficult to write.

Mental issues:

1) I am bipolar, but can not tolerate the popular meds as they turn me into a zombie. My job requires my full attention, so that is out. I control it with exercise, and I generally get the mania, not usually the depression.
2) Anxiety and sometimes panic attacks at night. Not too severe.

Things I don't have:

I am not double jointed or especially flexible, and I do not have mitral valve prolapse. :)

[Robin.booboo]

I just thought of another issue I had CONSTANTLY as a kid that nobody else I knew had. Have any of you had your skin on your toes "crack" or split open??? My toes "cracked" all the time as a child. I would go play with a friend in their yard in bare feet, and right along the lines where the big toe connects to the foot, my skin would split. I often wouldn't even realize it until the side of a blade of grass would come into contact with the open split and then it would be a sharp, sudden pain. I never understood at the age of five or so when this first happened, but I soon learned that barefoot was only for other kids and I always had to slather lotion on my feet and keep them covered in socks and preferably shoes as well, to avoid the "cracks".

[tex]

Robin,

Wow! Thank you, thank you, thank you. Your post inspired me to do one more search, using the key words "air hunger", and I found a site that had never come up before in any of my searches on dyspnea.

My dyspnea has recently become so serious, that I've come close to going to the ER a couple of times. Saturday night, for example, I never was able to get to sleep, because my breathing was so labored. Surprisingly, I wasn't noticeably sleepy the next day. (Probably because I was too busy concentrating on trying to breathe. ) It's been an on and off problem since then, but today it was a bear, most of the day, for some reason or other.

Originally, (6 years ago), I complained to my doctor that I was suddenly always short of breath, since recovering from surgery a few months earlier, and I had a few other symptoms of hypothyroidism, including the characteristic missing outer third of the eyebrows. He did a bunch of tests, and everything checked out just fine, except that my Free T4, (which he had only added because I specifically requested that test), was below range. He insisted that no thyroid supplement was needed, (since my TSH was mid-range), but I insisted that since Free T4 was below range, obviously something was wrong, so he agreed to a trial of a supplement. I started with a synthetic, of course, and then doubled the dose, and it helped some of my symptoms, but not all of them, so I asked to be switched to Armour, which he did, and there I stayed, all this time.

As I posted in another thread, I've been having problems with increasing heart rate, and increasing BP during the past couple of months, and I even had some heart palpitations one day, (all of which which can be a sign of hyperthyroidism, so I asked my doctor about it, and he suggested cutting my Armour dose in half, by taking one every other day, and come back to see him in a month. That sounded reasonable to me, and it did seem to slow down my heart rate, and reduce my BP, so I decided to go even further, and try one every third day, instead. After 4 or 5 days, though, the dyspnea problem became serious. So I stopped worrying about BP and heart rate, and started worrying about breathing. It didn't even dawn on me that it might be connected with the thyroid treatment dosage reduction, because it had never been this bad before. As soon as I started reading the article that your post prompted me to locate, though, it became obvious what the problem was - thyroid misregulation. I immediately took a thyroid pill. My breathing problem seems just like the lady in the worst case scenario, mentioned in the article. Hopefully, in 4 or 5 more days, I'll be able to breathe, again.

http://www.drlowe.com/jcl/comentry/brea ... oblems.htm

Are you hypothyroid? Have you ever been checked - not just for TSH, but for Free T4 and Free T3, (not total T4 and total T3, which most PCPs order, instead)?

Tex

P. S. The worst thing about this entire ordeal, though, is that in a moment of weakness, (after missing a night of sleep, due to breathing issues, which I incorrectly assumed might be due to a sudden onset of COPD, (I work in a very dusty environment, when storing and processing grain), I cancelled my decades old cigar club membership. Life takes some cruel twists at times, doesn't it.

[Kari]

Wow Tex - amazing!!! Goes to show you how important sharing information on this board is!!! Please let us know how you fare the next few days. I read most of the article and found this little clip amusing:

I admire this woman’s strength of character in wresting control of her health away from her doctors. Some of them have recently tried to persuade her to lower her dose again. "They simply don’t listen when I tell them what happened to me on the lower dose. I feel that I’m up against a wall of idiocy," she said. "I don’t have too many years left to fool around with their book theories, and I’m not going to let them kill me." The tragic fact is, of course, that many doctors today would sacrifice her health and, indeed, even her life. Like most fanatics, to these doctors any price the patient might pay is worth achieving their obsessive goal—keeping the patient’s TSH "in range."

In my early 20's I read a book about how we increasingly rely on so-called "specialists" for taking care of our health. The author suggested that we'd be better served by listening to what our bodies are trying to tell us, and take better care of ourselves through proper diet and exercise. That message has always stuck with me, and I smile when I read time and time again how incredibly wrong our "specialists" can be.

Good luck with your latest hurdle - it sounds like you've found your answer .

Love,
Kari

[tex]

Kari,

That clip definitely caught my eye, also, and if it weren't so sad, it would be funny, how so many doctors are so obsessed with keeping lab numbers in the "normal" range. I have to give my doctor credit that he didn't push to insist that I lower my dosage rate, but he was willing to go along with it, because my TSH was below range, on my last test. Of course, so was my Free T4, and so those two results show opposing extremes, which is a clear signal that something extraordinary is going on. IOW, low Free T4 means that I'm low on thyroid hormone, and low TSH means that I'm getting too much.

I took a thyroid pill about 2 and a half hours ago, and I'm already breathing much better. I can take a deep breath again, now, by yawning. A few hours ago, that was impossible. It will take several weeks to reach a state of homeostasis, though.

Love,
Tex

[Robin.booboo]

Hiya Tex!

I am glad I was able to help you with something! You have already helped me so much!! No, I have not been tested for anything to do with thyroid ....YET.... :)

It is hard to describe that particular issue - I just tell my partner that I am having trouble breathing and he can see when I keep gulping air and yawning. The worst I have experienced so far was last year when I got some upper respiratory infection. I had the yawning and trouble breathing - major "air hunger" problems, but it developed into pain in my lungs, each time I breathed in. I went in to my general practitioner and he checked me out and said my oxygen level was "lousy", so he gave me a "breathing treatment" and then sent me home with antibiotics, which resolved the pain in a few days, and an inhaler which worked for the air hunger, but made me VERY SHAKY. The inhalers and asthma meds commonly enhance any tremors and/or make people shake when they never have before.

Hugs,
Robin

[Kari]

Good morning Tex,

Hope you got a good night's sleep now that you can breath more easily again. It's such a delicate balance to find the correct hormone dosage - if memory serves me right, it took a couple of years of tweaking to get it right for me. However, I've been on the same dose for at least a decade now, and perhaps closer to 2, and everything seems to be fine.

What I found so amusing in the quoted paragraph was her expression "a wall of idiocy" - that's a new one on me and very descriptive :). Love the fact that she listened to her body and didn't let them bully her into something she knew was wrong - just what we do around here when it comes to treating MC.

Lots of luck to you in finding your way back to homeostasis, I have no doubt you'll figure it out.

Love,
Kari

[tex]

Hi Kari,

Yes, I was much better last night, and I slept well. The problem is, my dosage was ever adequate to completely relieve my symptoms, because of my doc's reliance, (another example of that wall of idiocy), on TSH results. My Free T4 has always been low. As a result, my dyspnea symptoms have remained, all these years, but they weren't serious enough to be debilitating. There's a possibility, that after all these years, like the lady in the article, I may have permanent damage by now. We'll see, I suppose, because I'll probably try increasing my dosage after I get stabilized a bit better, to see if that helps.

I agree that "a wall of idocy" is a very accurate description, when it comes to the reliance of most doctors on certain test results, particularly the TSH test for thyroid. It's almost as if Moses was given an 11th Commandment, that has been kept secret from everyone except doctors, all these years, and it says, "Thou shalt honor the TSH test result above all others". Doctors with that attitude could be replaced by a trained monkey, because they let the lab results do all their thinking for them.

Love,
Tex

[sarkin]

Wow, Tex, this is an amazing piece of the puzzle. (And I'm sorry to hear about the end of the cigar era!)

Wishing you a steady road back to homeostasis, and a full, deep-breathing recovery.

Love,
Sara

[tex]

(And I'm sorry to hear about the end of the cigar era!)

Well, the jury may still be out on that, (but I'll definitely need to improve a lot more before I can even consider it, again).

I never dreamed that thyroid hormone could have such a profound effect on the ability to breathe. I hate to think what might have happened if I had stopped taking it completely, and it hadn't dawned on me what was causing the problem, because I seriously doubt that my doctor, or an ER crew, would have figured out the problem. As it was, I didn't have much room to spare. It was just like having a severe attack of asthma, (as in a fingernail-turning-blue attack), except that there was no wheezing involved. The main problem seems to be weak nerve impulses that operate my diaphragm. The reason I feel that's the case, is because after I eat a meal, or drink something, I have trouble breathing. Belching helps a lot, in that situation. It seems to be slowly getting better, though.

Thanks.

Love,
Tex

[sarkin]

Tex, thank goodness your smarts were working, even as your air was being cut off. Having an 'asthma attack' type of experience, without wheezing, is far more urgently frightening than having 'every symptom of celiac except the villous atrophy' - in terms of a need for emergency care and an immediate fix!!!

Very, very interesting about the nerve/diaphragm connection. I've had panic-inducing experiences like that in big/cold surf, which I assumed was a mental-state thing (because the surf was big and cold!).

I have had a similar experience with eating and breathing discomfort, in the past, during certain meals. (Many of them involved pasta - no big surprise there.) And early in my recovery, I definitely experienced discomfort alleviated by belching (I think this may be what motivated me to move toward Paleo - because rice, corn, and early on even white potatoes were more likely to cause this).

I'm so glad to hear that it's getting better. I have this dream that I will grow my own tobacco, for my old age. I haven't smoked in a long time, but my husband and I both have enjoyed a fine cigar, and... I don't miss it at all, but I now suspect that the problem with cigarettes may be more complicated than just the tobacco itself. Not that I'm blaming gluten - for once!

I'll let you know when our first 'artisanal cigar' is ready...

Love,
Sara

[tex]

You know, thinking about this, breathing difficulties are sometimes a final stage symptom of Parkinson's disease, so presumably, they can also be caused by gluten ataxia. Besides the direct muscle damage, I know that I have permanent abdominal nerve damage, because somewhere along the line, early on, I lost my ability to feel hunger pangs, and that capacity never returned after I achieved remission.

Probably the combination of gluten damage and thyroid problems is what makes these breathing symptoms so severe for some of us with this condition. According to the article, such weakness of the respiratory muscles is called "hypothyroid myopathy", and when that combines with gluten myopathy, things can get out of hand.

Have you planted your tobacco yet?

Love,
Tex

[sarkin]

Tex,

We may have to collaborate on this cigar-growing project... if I'm remembering correctly, we northeasterners tend to grow a decent leaf for wrapping, but growing good-smoking cigar 'innards' requires a warmer climate. And no... I haven't started yet - and this sure isn't the time of year for it - but keep me posted on your thoughts about resuming this habit, and your improving breathing, because I need to stay a 'growing cycle' ahead of your symptoms!

I now wonder whether my lifelong poor 'wind' is not connected. And I never experience hunger pangs, but I have been supposing that my long habit of responding to dips in blood sugar, from a grain-centered diet, is a factor in this.

It is amazing what can go wrong, in the human body, from one primary cause... and how functional (and smart and warm and kind and funny!) we can remain, as various systems attempt their recovery.

Breathe safe, dear friend.

Love,
Sara

p.s. While we're on the subject of tobacco, it occurs to me that nicotine patches are widely available, but Dr. Fasano doesn't believe gluten in skin products could possibly have an effect. Innnnteresting....

[tex]

but keep me posted on your thoughts about resuming this habit, and your improving breathing, because I need to stay a 'growing cycle' ahead of your symptoms!

I'm hoping that I'll be breathing much better before you have an opportunity to get the crop started, in that case. You're right - some of the best shade-grown wrappers come from the NE area, but the best filler tobaccos come from much closer to the equator.

While we're on the subject of tobacco, it occurs to me that nicotine patches are widely available, but Dr. Fasano doesn't believe gluten in skin products could possibly have an effect. Innnnteresting....

Well, that's just because he obviously believes that it's the entire gluten molecule that causes problems for celiacs, (rather than the gliadin and glutenin peptidies that have been proven to be the problem), and everyone knows that the gluten molecule is much too large to be absorbed into the skin. So if it weren't for the fact that his entire line of reasoning is totally irrelevant to the issue at hand, (namely, the absorption of gliadins and glutenin peptides into the skin), he would have a valid point.

Love,
Tex

[sarkin]

My dear Tex,

If you just said, about Dr. F., "if he weren't wrong, he'd be right"... then I am totally patenting that remark (and it ill be in our Snappy Comebacks compendium, for sure!)

However, I don't believe that he actually believes that, so much as he's defending his formerly published work... so - paraphrasing what the great Enrico Fermi reportedly said... he's not right. He's not even wrong.

Sometimes, I positively enjoy the bee in my own bonnet - may that bee pollinate our tobacco plants, when we get to that phase My darling husband is returning home from Costa Rica in a couple of days... I fear too soon for him to research tobacco farming there. So you work on great respiratory health, I'll work on the wrapper leaves, and Further Research is Indicated on a delightful smokin' leaf (and terroir) when the time comes.

Love,
Sara