Mystery Diagnosis

[kymidwife]

OK, I've hesitated over the last few days to bring this up here in TeaChat, but I've decided to do so in hopes that someone has heard of my issue and has some constructive information to offer. That being said, I offer the disclaimer that I know this is not a medical forum, nor are my teachat friends here in the capacity of medical professional, and any or all information you might volunteer will be followed up appropriately with my personal medical care providers.

This may have NOTHING to do with tea... and for obvious reasons, part of me hopes it's ALL about tea, and part of me hopes it is totally unrelated to tea. I am having some recent physical symptoms which have coincided with my change in tea habits over the last 2 months. I've always drank lots of tea, but until recently it was mostly teabag grade tea with alittle Teavana mixed in... NO greens, NO oolongs, and NO hot tea or multiple infusions... only several glasses of fairly dilute iced tea per day.

Since I started my hardcore tea exploration, I started having some odd physical symptoms including tingling (not really complete numbness) of my fingers and toes, sometimes my lips and tongue... a sensation deep in my chest that feels tight like I need to cough... my tongue feels thicker than normal when the tingling starts up. The tingling and decreased sensation is occuring primarily in my 4th and 5th fingers of both hands, and my 3rd through 5th toes... and sometimes the skin on top of my hands and feet also feel tingly, sometimes pins/needles, sometimes a hot and cold sensation washing over them. I've had some difficulty sleeping on a few occasions, although not consistently... and on those occasions when my sleep has been disturbed, it has included difficulty falling asleep and also difficulty staying asleep/frequent awakening, etc.

I had not attributed any of this to tea at all, even though the symptoms started not long after I began trying many new teas on a daily basis, and at a time where my tea consumption has probably roughly doubled. Additionally, I think the tea I'm drinking is certainly stronger than what I was drinking before. Still, tea was not my first thought. I've seen 2 doctors, and they both felt it was related to B12 deficiency (even though my blood tests say my B12 levels are in the normal range, low end of normal but norman anyway). I've had 2 injections of B12 and upped my oral intake of vitamins but the symptoms have not changed. They also thought it might be related to iron deficiency, but again, my blood tests didn't indicate any serious anemia at all... and now I am taking iron supplement twice daily.

We've investigated all the obvious things... lots of lab tests, looked for possible things I might be having an allergic reaction to... considered things like tick bites and such... so far, both docs are convincedd that my low-normal B12 and my mild iron deficiency anemia are responsible for my symptoms. I am skeptical.

So, I had my trip to Dallas week before last. During that trip, I drank much less tea than usual, especially on the days I was flying. Those days, I had the least symptoms. The symptoms did not completely go away during the trip, but were noticeably reduced. And they have slowly but surely returned since I've gotten home and resumed my normal daily routines, including tea. After reflecting on the course of events, I began to make a possible connection. I also remembered having a similar tightness in the chest with urge to cough on a few occasions when I drank way too much coffee in the past... and that history strengthened my suspicions.

Over the last week or so, I've done a good bit of reading on caffeine, as well as the other chemicals in tea... nothing is jumping out at me as an obvious cause... but I am wondering, should I be concerned about things like pesticides, preservatives, etc. since I've been exploring such a variety of tea sources? I also wonder if I could be having some kind of theophylline or theanine or polyphenol reaction... or perhaps a newly-developing reaction to the artificial sweeteners I'm using in my iced teas. Believe me, I am mentally analyzing every possibility I can think of.

Again, it may be totally unrelated to tea, but seems like an odd coincidence. I am a passionate lover of the things that inspire me, and tea is no exception. I don't do things in a small way... and when I enjoy something, I tend to dive off the deep end with it... a good explanation of why I never drank much alcohol or smoked or tried drugs, because I was too afraid I'd love it and go overboard. So anyway, I have been drinking LOTS of tea, and very little of anything else for weeks now. I realize this is excessive, and I'm hoping my excess is responsible for my symptoms.

I poured out all my already-brewed tea tonight... and have decided to withdraw it completely until this situation is sorted out. I'm putting away my pots and cannisters for the time being. If this all goes away in a few days, I'll have my answer.... and I'll resume slowly and in careful measure until I determine the quantity that I can tolerate. For now, I'll be drinking water exclusively.

If it proves not to be related to tea, then its time for an MRI and a work-up for multiple sclerosis and fun things like that.

If anyone has heard of any unusual responses of this nature, your feedback will be appreciated. I will try to face my days without tea as bravely as possible, and hope I am not too grumpy. Pass the advil.

Sarah

[Geekgirl]

or perhaps a newly-developing reaction to the artificial sweeteners I'm using in my iced teas. Believe me, I am mentally analyzing every possibility I can think of.

Certain artificial sweeteners are known neurotoxins, attaching themselves to the dendrites, I think. There's a huge body of evidence that aspartame is not the benign substance the FDA would have us believe. Sucralose simply hasn't been around long enough to get a bead on what damage (if any) it causes to the body.

I've heard of other people who have nervous system side-effects from use of artificial sweeteners and other chemicals.

If you really want to narrow it down to whether it is the tea or the chemicals, you may want to forgo the artificial sweeteners and try using some other natural non-sugar sweetener such stevia.

That being said, some people do react very badly to caffeine. I have a client who cannot tolerate even a drop of caffeine, and immediately starts getting symptoms of intoxication, excruciating headache and blurred vision following ingestion of caffeine-containing foods. It did not start out this extreme, her sensitivity began with minor symptoms, and progressed over a period of years, as a sort of chronic inflammatory response.

You may be able to do allergen testing with a specialist. They can test both your tea and your sweeteners to see if one of them is causing the problem. Of course the home test is cheaper, but it sounds like you're in a fair bit of discomfort right now.

Hopefully you will get to the bottom of this quickly and easily.

[kymidwife]

Thanks for the input and for not assuming it's all in my head.

As for the sweeteners, I will have to investigate this avenue further. If the symptoms go away while I'm on my tea-fast, then I'll leave the artificial sweeteners out when I begin to reintroduce tea, so I will know for sure which is the offending product. I had actually begun to drink more and more tea unsweetened, particularly my hot oolongs. I'll just go to sugar for my sweetener if the other things are the issue... tried the stevia and didn't enjoy it.

Great feedback, thanks so much.

Sarah

[silverneedles]

any other sources of caffeine? coffee? chocolate etc...?

lead ....?

(intoxication with pesticides is usually something acute and has specific manifestations)

not diabetic ? checked glucose?

B12 has ~5years storage in liver = you get B12 deficit if you're vegan & no vitamin supplements

are you taking multivitamins - the ones with all the A Bs etcs & Zincs, Seleniums etc

(assuming you haven't been taking any TB drugs, or other antibiotics etc)

were you taking too much vitamins? overdoses can have weird outcomes.

other blood tests came back normal? Calcium? Potassium?

thyroid tests?

if still suspect something neurologic -- see a neurologist first.

It could just be something temporary, don't get stressed-out in a short time...

[chamekke]

I would add to Geekgirl's wise comments and suggestions, that sometimes caffeine affects people in unexpected ways. I always believed that I was "immune" to caffeine because it doesn't upset my stomach, never keeps me awake, and doesn't leave me feeling (obviously) jittery.

Then I noticed that whenever I have a coffee prior to attending tea ceremony class, I can see the results in the way I pour the water from the ladle. Normally the flow is controlled and smooth. If I have a coffee beforehand, my hand develops a very slight tremor - which is amplified by the length and slenderness of the ladle so that it's obvious to everyone present. The cup of the ladle actually bobbles a bit! It's like early Parkinson's. (At least, I hope it's only like early Parkinsons... will have to keep an eye on that.)

But caffeine is a drug. Sometimes we forget that.

In any case, Sarah, I think you're wise to investigate all the possible avenues. Putting aside tea altogether for the time being is an excellent diagnostic first move. If cutting it out altogether reduces the symptoms, then you can try adding the teas back, one by one, and very slowly, to see whether there's a particular one that triggers the return of the symptoms. Then it'll be easier (I hope) to work out whether it's the tea itself, vs. the amount you're drinking, any possible additives or contaminants specific to that tea, and so forth.

[silverneedles]

parkinson's tremor is a 'resting' tremor (when the arm/hand is doing nothing), generally disappears when you're doing an action.

[omegapd]

Hi Sarah,

I don't have anything to add- just wanted to wish you the best of luck.

[elchai]

Sarah, I hope you find the cause soon, I know this must be very aggravating.

I just wanted to add, I recently have tried some artifical sweeteners because Im beginning to wonder about my reaction to sugar. Anyway, some of the sweeteners gave me some strange reactions, not the same as yours, but I agree with whoever posted above that they could be the culprit.

I have LOTS of allergies and when I was tested for foods, they tested for tea, so I know that can be an allergen. I am allergic to soy, but depending on the way the soy is processed depends on the symptoms I have. Some soy I can tolerate, and some makes me very sick. So, it could be the same with tea, if that is the culprit. It may be that not all teas would bother you. Hopefull, its not tea!

But, I hope you find it soon to put your mind at ease...

[auggy]

Sarah, Wow, not fun! The only things I could think of would be a bad reaction to caffeine or to an artificial sweetener. I've heard of Splenda doing similar things to people. I had to switch from Splenda to plain sugar after it started triggering migraines for me.

The reactions you describe sound a lot like what happened to me to make me discover I was allergic to xanthan gum. It is used in tons of stuff, including gluten-free baking. My mom was diagnosed with celiac a little over a year ago so I had a lot more exposure to it. Anyway, last month for her birthday, we went to a GF restaurant and I had a big piece of cake that was made with xanthan gum. About 20 minutes later, I felt some chest pressure and an increased need to cough, the tip of my tongue and lower lip were numb/tingly and I got a headache and was dizzy. My mom got me some Benadryl and 15 minutes after taking it, I was fine. So now I avoid xanthan gum and keep Benadryl on hand just in case! And I've found my headaches have decreased a lot, too.

Hopefully you'll be able to figure out pretty easily if it is the sweetener or the tea causing this problem. Keep us updated on anything you find out? Good luck!

[geeber1]

Hi Sarah,

Sorry to hear about your health issues, I hope you find a cause and a cure soon!

I tried Splenda for a short time and it made me really sick, mostly intestinal, but also terrible headaches and nausea. As soon as I stopped the Splenda, the symptoms stopped also. I use Sweet 'n Low without any bad effects.

I'll keep you in my thoughts and prayers!
Vera (geeber1)

[Chip]

Hope you find the cause, Sarah! I don't have anything to add, but wish you a speedy recovery.

[Katrina]

Sarah,

I sincerely hope you find a resolution to your problem soon. Frustrating and scary, I'm sure.

As a mom of a child with allergies I just feel like I have to remind people that swelling of tongue/numbness of lips and tongue and tightening of the chest can be symptoms of an anaphylactic reaction to an allergen. Please be with other people when you start re-introducing these foods back into your diet and let them know ahead of time what's been going on. DON'T HESITATE to call 911 if your breathing becomes at all labored. Benadryl is a good first step.

(I know there are many medically trained folks on this forum who know far more than I, but I'm just hypersensitive to this stuff...)

[kymidwife]

any other sources of caffeine? coffee? chocolate etc...?

lead ....? Nope, no coffee at all and chocolate very rarely.

(intoxication with pesticides is usually something acute and has specific manifestations)

not diabetic ? checked glucose? Blood sugar is normal.

B12 has ~5years storage in liver = you get B12 deficit if you're vegan & no vitamin supplements
I have a blood level of B12 that is "low normal" but normal... so I've had 2 B12 injections and some subliingual supplements in addition to my daily vitamins, but so far it hasn't corrected the problem. That was the first thing my docs thought of.
are you taking multivitamins - the ones with all the A Bs etcs & Zincs, Seleniums etc Yep, religiously, every day.

(assuming you haven't been taking any TB drugs, or other antibiotics etc) Nope

were you taking too much vitamins? overdoses can have weird outcomes. None of my vitamin levels were abnormally high... they checked the B's, D, A, E, etc.

other blood tests came back normal? Calcium? Potassium? Both normal... parathyroid hormone is a bit high because my Vitamin D is too low, so I am taking extra D now, but they say my symptoms have nothing to do with those things.

thyroid tests? TSH is normal.

if still suspect something neurologic -- see a neurologist first.

It could just be something temporary, don't get stressed-out in a short time...

I'm trying not to get stressed out... not easy. Being a nurse means I overanalyze everything medical. If I don't see some improvement with cutting out the tea and artificial sweeteners, or if anything worsens in the meantime, I'll see a neurologist. I really appreciate the feedback so much.

Day 1 of No Tea was very disheartening. I can only imagine how disheartening it will be when my 2 orders currently enroute arrive.


Sarah

[kymidwife]

So, instead of answering each post individually, it seems more logical to thank you all collectively for your input and good wishes. I will keep everyone posted as I learn more.

Artificial sweeteners I can live without... but tea, thats a problem! So, I'm hoping to discover that ALL tea is not the culprit. I'd prefer to blame it on aspartame, as there seems to be a massive array of information neurotoxic effects of the stuff... tingling of the extremeties being one of those symptoms.

I drank water all day... and now I am home from work, and wishing for something warm and comforting. It's rather depressing to not have my tea. But, on the bright side, I haven't seemed to have any caffeine withdrawal headache.

Thanks again for everyone's input and concern. It really DOES feel like an allergic reaction of sorts... now I am thinking about taking some benadryl, just to see if that helps.

Sarah

[Riene]

Am sending you my best wishes, and hope for an answer soon.