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Old 07-16-2012, 04:24 PM #1
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Default can anyone help with diagnosis, please?

I came on a few months back--here's the brief history. I'm 41, have had Hashimotos' hypothyroid for 15 yrs, on med for that. In January, I changed birth control from one I'd been on 12 yrs to one with lower estrogen (in case that's relevant--it was my only change--no accidents, injuries, etc)
So in January--the pain started as carpal tunnel, but got severe and progressed to my arm and shoulder. Labs in March showed normal sed rate, neg ANA, neg RH factor. B12 was high (>1000), folate high at 17. Only abnormal was my TSH had gotten way high (9.75), we increased meds, it began to fall--normal limits now.
A Physiatrist suspected TOS, did an EMG done--showed CT. I started PT and after 7 weeks, no improvement, pain had spread all over chest area. The pain is a burning--lit on fire, not tightness.
Saw a neurologist--a good one rec by someone on this board--he did a lot of manual tests, and said a type of paresthesia--perhaps caused by my thyroid, and to wait until that was normal--it has been tech. normal 2 months
Currently the pain moves--wrist, shoulder, chest, breasts, stomach, arms legs.
I have not tried any prescr. meds. I am hesitant because I take 2 thyroid meds, and metformin and birth control (for pcos).
Side note--I am thin, 102lbs. (With my conditions this is not the norm, so I thought I should add).
Things that somewhat help--ice pack, or a hot bath--both temp. relief. Moving, walking helps. But now the pain is so bad at night I cannot sleep.
Sorry for the length/if this is the wrong place. Thanks for any help/advice.
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Old 07-16-2012, 05:34 PM #2
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If you take metformin, you might need B12. This drug impairs B12 utilization.

Have you had a B12 test? Was it over 400? Don't accept a doctor's claim of "normal" without knowing the result.
Labs in US are still reporting lows as "normal".

Another thing that helps pain is magnesium. If you are low in this, and your use of Metformin suggests diabetes, which wastes magnesium through the urine, then getting a good magnesium supplement ( a chelated form, NOT OXIDE), may help.

Using a lotion topically along your wrist and arm of magnesium may help too. Epsom It or Kirkman cream are two available online today. The magnesium from the topical can get to places that oral may not reach due to vasoconstriction and inflammation.
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Old 07-16-2012, 05:51 PM #3
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Originally Posted by mrsD View Post
If you take metformin, you might need B12. This drug impairs B12 utilization.

Have you had a B12 test? Was it over 400? Don't accept a doctor's claim of "normal" without knowing the result.
Labs in US are still reporting lows as "normal".

Another thing that helps pain is magnesium. If you are low in this, and your use of Metformin suggests diabetes, which wastes magnesium through the urine, then getting a good magnesium supplement ( a chelated form, NOT OXIDE), may help.

Using a lotion topically along your wrist and arm of magnesium may help too. Epsom It or Kirkman cream are two available online today. The magnesium from the topical can get to places that oral may not reach due to vasoconstriction and inflammation.
My B12 was "high" on the labs and the reading was >1000. I do take magnesium supplements, have for a few years, but had not taken b12 when the rdg was so high. We tested b12 for the reasons you mentioned, and was surprised it was so high--I've been on metformin 12 yrs, I don't eat meat, but do eat dairy.
I know a diagnosis isn't everything, but at this point it would be nice to know. I don't fit PN because it is burning pain all over--especially chest, arms, under arms, backs of legs & calf.
thanks for your time and wisdom
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Old 07-17-2012, 08:42 AM #4
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My B12 was "high" on the labs and the reading was >1000. I do take magnesium supplements, have for a few years, but had not taken b12 when the rdg was so high. We tested b12 for the reasons you mentioned, and was surprised it was so high--I've been on metformin 12 yrs, I don't eat meat, but do eat dairy.
I know a diagnosis isn't everything, but at this point it would be nice to know. I don't fit PN because it is burning pain all over--especially chest, arms, under arms, backs of legs & calf.
thanks for your time and wisdom
This is a form of PN... when diabetes affects the dorsal roots along the spine, the sensory symptoms can be like yours, global.

Here is a link:
http://neurotalk.psychcentral.com/thread147771.html

Have you tried taking lipoic acid? This sometimes helps with diabetic neuropathic pain.
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Old 07-17-2012, 08:49 AM #5
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Originally Posted by mrsD View Post
This is a form of PN... when diabetes affects the dorsal roots along the spine, the sensory symptoms can be like yours, global.

Here is a link:
http://neurotalk.psychcentral.com/thread147771.html

Have you tried taking lipoic acid? This sometimes helps with diabetic neuropathic pain.
This may sound "dumb"--but is it possible for me to have diabetic PN when I do not have diabetes? I take the metformin for PCOS. Again, I'm very thin--but hormonally, I have some definite endocrine issues. My fasting glucose was 109 12 years ago before metformin, now it stays around 88, 90.
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Old 07-17-2012, 09:26 AM #6
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There is a thing called "impaired glucose tolerance".

It is not frank diabetes, but sets the stage metabolically for
damage. Often it consists of LOWS...which can starve neurons.
The swinging from low to high, only shows up on 4hr or longer glucose tolerance testing.

That is a LONG time to be on metformin. One common characteristic of this drug is to affect acid/base balance of the blood. Acidosis is a common side effect, and an acid environment can cause burning paresthesias.
Here is a link that suggests metformin can be a "cause" or provoke PN:
http://www.ncbi.nlm.nih.gov/pubmed/22100324

It also can affect your kidneys. I hope you get those tested regularly. When the kidneys start to malfunction, renal acidosis may develop.

You can test this yourself with a dose of bicarbonate to see if the burning changes. I use AlkaSeltzer orig. formula for this for my burning feet. I only use it occasionally because my burning is less now. This contains aspirin, and if you can't take aspirin for some reason, you could try the aspirin free version. But I think the aspirin helps with the blocking of PN burning as well.

Chronic pain is an acidic event at the tissue level. There have been studies about this.

A simple remedy like this:
http://www.gettingbacktohealthy.net/...ice-and-water/
Is often offered for chronic pain. The citrate in citrus fruits actually may reduce acid in the blood.

This is the list of side effects reported on metformin:
http://www.drugcite.com/?q=metformin
Some people cannot tolerate metformin. I am one of those. I had PCOS and now am insulin resistant as well. Metformin made me so sick, both times I've given it a go.

There is another way to approach PCOS...
http://www.chiralbalance.com/
This is a special form of inositol and is very easy to handle.
I took it for 2 yrs. d-chiro-inositol. Its only downside is that is pricey.
There are many papers today on d-chiro inositol...like this one:
http://www.ncbi.nlm.nih.gov/pubmed/21210850
It can have a dramatic effect on lowering androgens, which are elevated in PCOS patients. That is the reason I took it. I wish it had
been around 35 yrs ago when I was trying to conceive. Those were trying times, and PCOS was not understood then.

So if you were up for it, you might discontinue metformin for a short time, see if the burning lessens. Take the Chiral Balance instead.

Also it is important that you do not take other RX drugs that have PN potential. There is a thread on the subforum above about drugs that may cause PN.

Read up on d-chiro inositol and discuss with your doctor.

Often when people get a nerve pain disorder... one should look to lifestyle and diet and drugs being used. Often the trigger may be hidden there. As far as diet goes... gluten can be a culprit.
Also the nightshade family of veggies can cause considerable burning in some people. I found this for myself a few years ago, and once I eliminated peppers and potatoes (and some concentrated tomato products), my burning feet and legs improved dramatically. I found the burning from nightshades to be delayed up to a day or 3... it is often not immediate in effect and hard to pin down. So an elimination diet is needed to see if they are culprits.

The body burning can show up from a viral infection. Some members here have that. Also a vaccine reaction. In these cases, only time helps if healing is to occur. The virus somehow damages the dorsal roots and in some healing can happen, but others lack the nerve growth factors to accomplish that. New research is looking into stem cell therapy for those patients who cannot heal properly.

Carpal tunnel does come from low thyroid. It is due to the mucin deposited in tissues, which compress nerves in wrists and ankles.
I had terrible CT when I finally got pregnant (after 6 yrs of trying).
It diminished after delivery but I still have some symptoms now and then. I would wonder if your birth control is doing it, as the doctor who gave me the EMG during my pregnancy said hormones can make it much worse. I use wrist braces made for CT at night when sleeping if I have issues which for me come from overuse..gardening or other strains on the wrist from activity. I am also hypothyroid, but I am negative for Hashimoto's.
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Old 07-17-2012, 11:55 AM #7
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this is all so helpful "thanks" doesn't sound like enough--you are a blessing
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Old 07-17-2012, 01:10 PM #8
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Oh, thank you. I've had carpal tunnel since about 30 (also had terrible PN in feet). This was from the hypothyroid, which didn't give clear blood work results to intervene. Then the pregnancy at age 34 and my hands were 80 gone according to EMG. Luckily my hands improved after delivery and I have avoided surgery. The thyroid then became a right sided goiter, and after a scan, the Endo finally pronounced my hypo, and I use 75mcg now of levothyroxine.

I do put ice packs on my wrists in the heat like we are having now. It helps. And I always have my CT braces handy. Sewing really bothers me so I had to give up my crochet hobby. I only sew now to mend things. And only for 1/2 hr at a time.

So I have had PN in various incarnations for 36 yrs. Most of it now is under control, but it took me a LONG time to find my triggers and hints. I therefore share those ideas with people here in hopes of making them more comfortable. Doctors won't do that, their interventions are scalpels or mind numbing drugs.

The nervous system is a early warning system to alert us to danger. But the dangers when we evolved were not so toxic as they are today. So it only makes sense that the nervous system will respond to imbalances in metabolism, toxins/drugs, vaccines and unusual foods we normally wouldn't eat every day.
Early people did not have wheat or potatoes you know! LOL
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Old 07-17-2012, 01:19 PM #9
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I would wonder if your birth control is doing it, as the doctor who gave me the EMG during my pregnancy said hormones can make it much worse.
I've wondered about the change in my birth control--since that was my only change and it was right when symptoms started. I'm tech. infertile, but stay on birth control to keep my hormones regulated. I know there are other natural ways...I tried a few back in the days of trying to get preg...anyway, I've been on the same pill 12 years, and then switched to one with lower estrogen. I tend to have very low estrogen on my own, so I've wondered if this is just too low. I'm now on the lowest type pill--because of my age, 41, DR wanted to switch me--then I'll stay on this through meno. Having metabolic syndrome, Dr felt this was best. Seems I've read estrogen can have a neuro protective effect?

Also the TSH going sky high--that was probably either a Hashimotos flare, and/or some soy protein bars I was eating daily (I knew better, but had been OK with other brands, but these were loaded w/ soy isolate) .

No dr has given the estrogen connection any thought--and most, even endo, missed the thyroid link--though now I see everywhere about hypothyroid neuropathy. Still, my levels have been getting better for 2 months, so maybe it's still too soon to rule out the thyroid cause?

I'm looking into the nightshades/diet stuff. I'm generally a health nut--and started avoiding gluten about a month ago to see if that might help. Other than that, I've taken fish oil for years, tried many of the supplements I've seen listed here. Still hoping for relief.
Thanks so much for your time

Last edited by mrsD; 07-22-2012 at 03:13 AM. Reason: fixing quote for clarity
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Old 07-17-2012, 01:44 PM #10
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The nightshades contain solanine. If you search "solanine" on the web or on this forum, you'll find some of my searches and posts. Solanine is thought now to accumulate in humans and is very high in nightshades. Giving up potatoes, has really helped me. Who would have thought? Wish I had known that 20 yrs ago.
Some tomato is okay for me, but concentrated into paste sauces will cause me to burn, most of my burning is on feet.
There are sites with histamine containing and releasing foods. Tomatoes are one;
http://neurotalk.psychcentral.com/thread161714.html
My husband has always avoided tomatoes because he says they make him itch/tingle.

Another thing that is very very damaging is MSG. This inorganic salt of glutamine stimulates the pain receptors NMDA. So it is best to avoid it as much as possible.

Different people react differently to foods. So it would be a good idea to do eliminations on various groups.
Soy
Casein
gluten
nightshades
Even Onions/garlic (lily family)

The problem with birth control is that it is a constant hormone provider, whereas we women cycle estrogen. Estrogen peaks at day 14 or so and then drops again. The doctor who did my EMG of my arms, back then said the hormones are high during pregnancy and make carpal tunnel much worse. Once they dropped, about 3 days after my son was born, my hands improved dramatically. And I could hold a pencil again, etc. I was very disabled by the CT from the 5th month until delivery.

I think the only way to know about the BCs is to stop them and see what develops. I never took BCs or any menopausal hormones either. Back in the days when they first were introduced I took them for about 2 years(they were stronger then too), and had fluid retention and elevated blood pressure. So I stopped them. I was in my early twenties then and in good shape, and horrified by my side effects. It was not a difficult decision. I had started with an estrogen only one, that had progestin added the last 7 days...C-Quens was name. They worked ok. But then the FDA got into a snit about tumors in Beagles from them, and took them off the market. I was forced to use Lo/Ovral, which was a horrible failure. I blamed the progestin for my troubles, because all the BCs then had progestin in the whole course.
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