Undiagnosed Symptoms Community
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10506901 tn?1431354357

tingling hands and feet, help me solve this

So I need some help trying to find some answers to this ongoing mystery.I will try and break down everything I know.

Ths story:

Near the end of last summer I started to notice that when I exhaled I would get tingling in my fingers. Soon I had tingling in my feet. My calf muscles also began to feel achy often and my feet also began to tingle. The tingling/buzzing/pinprick sensation became an ongoing (24/7) problem with my hands and feet. My limbs also began to fall asleep much more easily. I also notice sharp shocks in my hands whenever I startle or release adrenaline. I went to the doctors and was checked for deficiencies and thyroid. All was normal, and I had high b12 I think (high end of normal). I had an MRI of my brain and neck it too was normal.
I have had every test done that I could do for lyme disease as well.
After a few months the tingling stopped and seemed to disappear for the winter. 2 weeks ago it came back.

Some relevant info: I am a 23 year old female. I am pretty active (bike everywhere and work out almost every day). I have a bowel condition that doctors have no answer for, just chronic idiopathic constipation. Ive had this since I was 17 and I use milk of magnesia and suppositories regularly. I am tired often. I am prone to anxiety, but I doubt anxiety could cause unceasing tingling in my extremities. I suspect I have a weird form of hypothyroidism, even though I have had my TSH tested 1000 times.. However I am not really overweight so I dunno.

someone able to relate???
13 Responses
1530171 tn?1448133193
Hey Cassie, I was in your city just a couple days ago
( Stayed at West Beaches area)

You're brave to bike everywhere there! Toronto must be the most bike unfriendly city in the western world, lol!

Anyway, a couple things that kind of stand out in your post.

Your B12 at the higher end of the normal range is a paradox
if you consider your symptoms. The only explanation is that your
B12 cobalamin levels are high, yet your Methylocobalamin B12 (neurological form) is low! This is a situation caused by low methylation
which doctors do not check. MMA testing does nor necessary indicate this deficiency so instead of asking for a Homocysteine CSF test -which may make  your doctor think you're form another planet-you can consider doing a trial of Methylocobalamin B12 in sublingual drops. At the same time you may want to add Methylfolate  (Neurological form of folate) as it would be deficient as well.

The other observation is "normal" thyroid findings.
You definitely have some hallmark symptoms of hypothyroidism.
Well I have to say that most people with so-called normal thyroid findings,but with unexplained typical thyroid symptoms,  to who I have suggested proper testing for thyroid FUNCTION, do indeed test positive for hypothyroidism.
And the rest, either they don't follow up or I just don't hear form them again

So to totally rule out low thyroid function, ask and insist for Free T3 (ft3), Free T4 (ft4) and Reverse T3 (rt3)
You need all 3 and I'm not sure if OHIP covers the rt3. You may have to pay extra.
You can test TSH as much as you want, but when the "normal" levels of circulating thyroid hormones in the serum are not biologically active in the cells, your thyroid function is LOW!
This is not any different that diabetes 2, where the pancreas produces adequate insulin, yet the insulin does not make it into the cells because of
insulin resistance.
Can you imagine how many people would die every day, should doctors test only for serum insulin levels and totally ignore insulin resistance ?

Your suspicion is well warranted and hypothyroidism could also relate to
slow motility and constipation.

The lyme disease investigation was very likely flawed.
I posted this in the Lyme Community a couple weeks ago in response to another member's post:

"Unfortunately there's no split in the medical community in Canada.
It's 100% unsafe for doctors north of the US border to treat chronic Lyme's.

In 2008, there were only 2 doctors in Ontario willing to treat Ontarians suffering with Chronic Lyme disease.
By 2010, Dr. Krop from Mississauga, Ontario, was forced to retire by the College of Physicians and Surgeons of Ontario.
This left Dr. Baghadlian, a North York, Ontario, infectious disease doctor to treat Ontarians with Chronic Lyme disease.
However, by March of 2011, Dr. B was also under investigation by the College of Physicians and Surgeons of Ontario, leaving his patients with no choice but seek treatment elsewhere.

I had recommended Dr. B to a few patients, however, the last 2 could not
see him b/c the College had already started their investigation"  :(

You now have a better understanding of how disturbingly wrong the approach to Lyme's disease is in Ontario. (it's the same in the entire country)

I hope you find some of this information useful and please let me know if you have any questions.

Best wishes,

10506901 tn?1431354357

Thanks so much for your response. I am aware of all the Lyme disease BS. I went to a Lyme specific clinic and payed for extensive testing. I do not think I have Lyme, but my heart goes out to those who do, especially in Canada.

I see my doc on May 5th and I will try and convince her to do more thorough thyroid testing, though to get anything done I feel I need to call in the mob or something (kidding).

1530171 tn?1448133193
Hey Cassie!

You're funny! Well I don't know about the mob, but sometimes you need
to "push the envelope", to get things done.

I don't think you have Lyme's either. It's a tough condition to battle.
I personally know a lady with Lyme's who worked as an RN a few years ago here in town, and is now totally bed-ridden .
Unfortunately her former medical connections were more of a burden, as she never got a dx in Canada.
She finally seen an LLMD, I think in Philly, who diagnosed her.

Here's some additional info, which may be of help to you.

  fT3/rT3 ratio is probably the most reliable marker for low cellular thyroid function. A ratio over 20 is desirable.

To my opinion though we cannot find a better method to test than Dr. Barnes Basal Temperature Test. (there are several versions now)
I have devoted countless of hours, scanning through the studies and groundbreaking work of Dr. Barnes, The Father of Hypothyroidism, lol!
  Simply brilliant and way ahead of his time!

Instructions For Taking Basal Body Temperature:
Use an ordinary oral or rectal glass (not digital) thermometer.
Shake down the thermometer the night before, and place it on your nightstand.
The first thing in the morning BEFORE you get out of bed, place the thermometer under your arm for ten(10) minutes.
Avoid any heavy blankets, or other source of heat  like partner/ pet .
Record the temperature reading and date right away!
Repeat for 10 days.
Normal Range: 97.6 to 98.2 ( 36.44 - 36.77 Celsius)
Averages below this range indicate hypothyroidism.

Note that in the presence of any infectious conditions,  these results may be inaccurate and this could be a problem with chronic low grade infections accompanied by low grade fevers, for the purposes of the temperature testing.

Or you may want to do the original Dr. Barnes Test. Very similar.
Just check it out online if you want.

Let me know how it goes.


10506901 tn?1431354357
Thank you so much for the info. I went and bought a thermometer today and Ill try it out.

So world, I have some thoughts.

I have a theory and I am wondering how it sounds. The tingling in my hands is not quite the same as the sensation in my feet. Its mostly on the backs of my hands and often feels like a burning.....and its effected by my breath sometimes. I realize its most noticeable when I am on the computer.....but its not carpel tunnel. Its most prominent when I am slouching. Also yesterday I tested my blood pressure at a drug store and the cuff inflation on my upper arm caused my hand to really really burn. This makes me think I have some sort of bilateral nerve compression?

I also noticed that when I am in plank position sometimes I get shooting pains all the way down my leg from my hip into my feet. These things happen pretty easily. The pain in my calves and sometimes my hands and feet can be this weird cold sensation.

So I have tingling in my HANDS and feet but not always at the same time. I have had an MRI on my head and neck that was normal. However I am wondering if my constant physical activity has somehow misaligned my spine in some way? Particularly my lower back and some how its affecting my posture and the nerves in my arms.

I also cant figure out why this went away for like 5 months and then came back. I have started back at a job where I stand 7 hours at a time...so maybe that effects my spine. I also have been doing ALOT of Krav Maga the past month (5-7 hours a week) plus my usual bike riding of about an hour per day.

So either something in my spine is effed up or I have some sort of systemic nerve irritation or.....inflammation on the nerves? Any thoughts are welcome.

1530171 tn?1448133193
Well, most of your symptoms are neurological, so it's likely a combination of factors that have to do with your neurology.

One of main targets of hypothyroidism is the neurological system, even when subclinical.
High B12 levels needs to be revisited. There are not too many causes for B12 to accumulate, since B12 is water soluble.
In the absence of liver disease, kidney failure and some blood cancers,
the one reasonable explanation left, is low methylation, which is characterized by high B12 and possibly high folate, yet, deficient in the neurological forms of these ( methylocobalamin and methylfolate respectively) as I mentioned before.

Your activity level does not seem to be excessive, but what may be of
concern is the postural and high stress/impact of your activities (biking and Krav Maga).
I'm a cycling enthusiast (not big city though,lol!) and used to do Martial Arts( Kuk Sool Won and Tang Soo Do-Korean styles) until I had a freaky sparring accident and really hurt my back.
Miraculously, I made a complete recovery on my own (I'm tough- minded, disciplined and well-trained), but never returned to Martial Arts. I'm into enough physical activities though, to keep myself in good shape.

Standing 7 hours at your job? I hope you have a friendly mat to stand on all these hours. If not, consider talking to your employer about it.
Personally, I would buy my own, if the employer does not take care of it.
Is your job stressful, boring, or other?

Your hypothesis for most part work in theory and I think they're  perhaps contributing factors without necessarily being the main causes.
Inflammation of the nerves, yes, very likely.
Methylocobalamin B12  repairs damaged nerves and helps reduce neurological symptoms.
I was taking 1500 mcg sublingual methylocobalamin drops for nerve pain support as a therapeutic dose daily. Now I take 500 mcg for maintenance.

I hope this helps.
Got any questions, I'm just a click away.


10506901 tn?1431354357
So I bought a 20 dollar thermometer.....and it was broken....and I lost the receipt.
I am really broke.
I am waiting to borrow one.

I tried to get in to see my doctor but....to make a long story short I have to wait another 2 weeks because....Canadian health care.

Just some thoughts.

During the winter I rode my bike throughout, even during the coldest days of the year. If I was hypothyroid wouldnt this be like...nearly impossible because people who are hypothyroid tend to feel cold all the time? I actually have a pretty good tolerance for cold. Is it possible for thyroid/glandular issues to be intermittent? If so can I heal myself of them in some way?

I ask these questions because I have absolutely zero faith in the medical system here and it usually comes down to "what can I do?" as they always tell me I am crazy/wasting their time etc.
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