Its possible you may have a Hereditary Neuropathy like Charcot Marie Tooth disease. Would discuss with your Neuro as well. In any event, I hope you find some relief.

Thank you for all those who have given me their thoughts about my condition. Just an update - I had MRI of my head and neck, both were
normal. I had NCV and EMG but results are yet to be discussed with my neuro in my next visit. I also had a test for the lower extremity doppler. The technician commented that it was normal. I have essentially been tested which could be the cause of the neuropathy but it all came back normal. Except for my thyroid function test which is a little way off. My primary care physician has been trying to adjust the dosage of my Synthroid (for 3 consecutive times) but it just could not make my TSH normal.

Does anyone in the group has hypothyroidism as the cause of the PN, even with just a little abnormalities? I wish I could find an underlying condition for my PN, at least there is something to cure.

I purchased a guidebook on PN from MediFocus. It says in that book that Levothyroxine is contraindicated with Gabapentin. Is this true?

I am now experiencing much pain in my feet. I barely can stand and walk because of the pain. The burning is really bad as well as the jabbing, lancinating and prickling in my skin.

Thank you all for "listening" to me.. It scares me to death living in constant pain for the rest of my life.

I had terrible PN in my feet when I was hypo...back before my son was born. I also had carpal tunnel --lost 80% function in both hands while I was pregnant.

I didn't get a firm diagnosis of hypo until I had a radioactive uptake test done...which showed a dead left lobe and goiter in the right side. My tests were not severely off either. The isotope was called technicium.

When I started levothyroxine, it was very slowly. 25mg a day for 3 mons and then 50mcg. I stayed at 50 for a while, then we had very severe winter and lost power for 4 days, I had a hypo crisis, which was terrible. Then I was raised to 75mcg, and that seemed to stabilize me and that is where I stay.

Some people with Hashimoto's can fluctuate up and down.
Also people low in iodine intake can not respond properly.
Using a standard kelp product which mostly have 150mcg..each and take 2 a day...may help.

Then there is peripheral conversion issues. People low in zinc and selenium cannot convert T4 to active T3. So if you take levothyroxine, it may not work...since it is inactive, and needs conversion in the tissues.

It can get very complex. Then there is "reverse T3" which is also inactive.

One of the best resources on the net is Mary Shomon:
http://thyroid.about.com/bio/Mary-Shomon-350.htm

There is considerable disagreement among medical doctors on how to deal with thyroid problems. So it is not easy getting this fixed.

Keep in mind you MUST take the same brand of hormone when testing. Things vary even among brand names! Also always take first thing in the morning, on an empty stomach and no food for an hour. Very critical for absorption...just like the B12 and some other drugs that are given in microgram amounts.

]

Thank so much Mrs. D. I had my Total Thyroidectomy in 2007. It took months before I had my thyroid function stabilized. I was on .75mcg for years, until my PN symptoms came last Oct. 2010. Due to my PN symptoms, I had essentially tests related to PN, all came back normal, except the TSH. It was 9.230 (normal range 0.450-4.500). Then, my Synthroid was adjusted to .100mcg resulting to a TSH of 0.078. Then, my Synthroid was again adjusted to .88mcg resulting to a TSH of .162. Now, I am on .88mcg for 5 days and .75mcg for 2 days. Hopefully, my TSH will be normal in my next test. My neuro does thinks that my TSH numbers is enough to cause my PN. You see my PN symptoms are all over my body : pain on both feet; jabbing, prickly and lancinating pains in my legs and arms. As you know, it is very uncomfortable even the touch of a soft materials in my skin. I am taking my Synthroid on empty stomach at 5am, followed by VB12 (methylcobalamine) at 6am at the Gabapentin at 7AM. It is only after taking Gabapentin that I take food.

Do you know if Gabapentin and Synthroid are contraindicated with each other, taken on different times?

I have been to 2 neurologists, both of whom seem to be nonchalant of my symptoms. If they only know/experience the pain, I am sure they would have been more sympathetic.

Again, thank you Mrs. D.

This is the drugchecker at drugs.com

no interaction with gabapentin listed;
http://www.drugs.com/interactions-ch...=1147-0,1463-0

not all drug checkers are 100% accurate or 100% up to date however.

I personally have never heard of this interaction.
Can you link to the place where you found it?

I read it from the guidebook about Peripheral Neuropathy which my husband bought online. ** Under the topic of medications/treatments : Gabapentin is contraindicated with various medications, among others is Levothyroxine
.

Before taking the Gabapentin, I also checked the Drug ** Checker and i was confident that Gabapentiin and Synthroid have no contraindication. But now, i am confused with this new information.

Is your neuropathic pain limited only to your feet?

That may be one of the most confounding and infuriating circumstances with this... condition. I recently read (once again) that there are somewhere in the range of 50 to 100 known causes of PN, some of which are treatable, and some of which resist treatment. Yet after evaluations for all those etiologies are performed, somewhere in the range of 30-70% (guesstimates vary) of all peripheral neuropathies remain idiopathic.

Knowing the cause does not guarantee a cure, arrest, or even a treatment, yet... some people with PN whose cause is never found have still been able to find some relief/improvement.

I'm trying to be a little philosophical about it. I'm going at it kind of backwards, like... reverse diagnosis. Since my cause hasn't been found, I'm looking for/trying things that help/improve my symptoms, thinking/hoping that that may lead to clues in figuring out a cause. If it doesn't, I'll still have improved a bit, and IME, that's easier to live with than the alternatives. I guess for me, getting better is more important than knowing the cause, even if I knew what that cause was.

I don't know if this can help anyone else; it helps me to cope.

Doc

Well, I think it is unusual to be on a low dose levothyroxine product after a TOTAL removal of the thyroid gland.
Usually they start people off at 100mcg to 125mcg.

Thank you for the quote... the grammar? Was this an abbreviated download? When I went there I saw that the abbreviated download was free but a charge for the full book?
If this quote is from the abbreviated one...I think what it is saying is that gabapentin has interactions, and among other drugs, there is levothyroxine (and maybe more with their own interactions). So the grammar is odd IMO in this quote.

Gabapentin is popular because it DOES NOT interact much with other drugs. It is not metabolized by the liver, and so all the enzyme effects on the liver are not present.
This is a further detail on drugchecker at drugs.com
only 5 major interactions
http://www.drugs.com/drug-interactio...&generic_only=

This is the moderate list which is longer:
http://www.drugs.com/drug-interactio...&generic_only=
While this list looks impressive, this interaction is mostly
for the sedative nature and side effects of potential cognitive impairment with gabapentin which are so common for most people.

Levothyroxine does not cause cognitive impairment or sleepiness so it is not on the moderate list either.

Now, one type of interaction with levothyroxine which is possible with some drugs, like warfarin, is the displacement off carrier proteins in the blood. Thyroid hormones are shipped around the body by these proteins and some drugs have more affinity for them than others. So the thyroid hormone may be bumped off its carrier by something else. But I don't see this listed from Drugchecker either. It is possible you are having problems with the proteins that carry drugs. Either you take another drug which is knocking the thyroid hormone off resulting in poor distribution, or your body is low in protein from diet or some other reason, and the hormone cannot be distributed well, because of that.

So with the added detail of your total removal of the gland, then the kelp/iodine suggestion would not work for you. That only works if some gland is present.

Yes, I have PN in my hands too. It was very acute at one time, and now is only minor. I control it with wearing carpal tunnel braces when needed. It tends to flare with fluid retention or overuse of my hands (computer, gardening, stressful tasks).

The type of PN that comes from HYPOthyroid conditions is mostly compressive in nature. Hypothyroid situations, result in the deposit of a type of tissue in the body, at the wrists and
ankles, and this compresses nerves and causes pain, numbness and/or loss of function. When I was pregnant the additional hormones created a severe compression at my wrists, and EMG showed 80% loss of function. This resolved to my old levels after I delivered my son.

By the time I was finally diagnosed, my feet were pretty numb.
During my titration up in dosage over the months, they "woke up" and tingled alot until most of the numbness is gone. I still have some residual numbness in the middle toes of each foot, but the doctor would not go higher with the levothyroxine because of my TSH at 1.5-2. It varies in that range now.

I think my husband got the complete guidebook as he had to pay for it.

I started on 100mcg after my thyroidectomy, however, it had to be adjusted several times in the course of several months until my TSH stabilized at 75mcg. It was during the onset of PN symptoms that myprimary care physician requested for the TSH test (that was in October 2011) to look for the underlying conditions (among other several tests I have been through for the past 4 months) and since then, my TSH has not been normal.

Other than Synthroid and Gabapentin, I am taking VB12 (Methycobalamin), Vit E, Vit. C, Multivitamin, Selenium, Glucosamine, Omega 3,6,9, Metamucil and Calcium. I take my Calcium 5 hours after I take my Synthroid.

Out of desperation and frustration of the pain, I am considering of participating in a cllinical trial for peripheral neuropathy but there has been no recent trials that I could see online. My neurologists dont know either.

Does Gabapentin work well with Cymbalta? If yes, does Cymbalta work well with Synthroid?

Thank you Mrs. D!

In your readings, did it enumerate the list of 50-100 known causes of neuropathy, just additional information.

I like your philosophy in coping with the pain. While reading your post, i was trying to relate it to myself. I really dont have extraordinary diet or activities that I could think of knowing which aggravates the pain or gives me relief. I dont smoke nor drink. I eat relatively healthy food. I used to walk 5 miles a day until the onset of my neuropathy in October 2011. My symptoms came suddenly. Now, I do moderate stationary bicycle. I dont know if stationary bicycle will aggravate the nerves.

I am relatively new in this forum. I would really appreciate if you can direct me to the post where Mrs. D listed the kind of foods/diets/supplements/vitamins for Peripheral Neuropathy.

I was diagnosed with idiopathic Peripheral Neuropathy, after having been tested with all sorts of tests. I am willing to try everything just to get relief from this terrible and horrible pain. Like you, even the softest clothing give me pain. I have stabbing, prickly, jabbing, lacinating pain in both my legs and arms. My feet are also painful that it hard to stand and walk.

Do you also feel that intermittent sensation of coldness that creates "goose pimples" in your skin?

Would appreciate your reply.
Thanks.

This is our SubForum with lots of informational threads:
Supplements is one thread there.

http://neurotalk.psychcentral.com/forum119.html

I also have specific vitamin threads at the Vitamin Forum here...
magnesium, B6, and essential fatty acids.

http://neurotalk.psychcentral.com/thread1138.html

http://neurotalk.psychcentral.com/thread92116.html

http://neurotalk.psychcentral.com/thread30724.html

http://neurotalk.psychcentral.com/showthread.php?t=6092

Thank you very much Mrs. D.

I am new in this group but I could see all the help you have given to members who are suffering the horrible and unimaginable pain, like me.

I wrote a very long message before this but I did not realize i was logged off.

So, i have to re-write this message....

As mentioned in my earlier posts, I have been tested will all possible tests but they all came back normal, except for my thyroid function. My neurologists do not seem to be concerned about the numbers because they think its not too way off.
I have been reading about the benefits of A Lipoic Acid and R Lipoic Acid but they have side effects on hypothyroidism. I want to try it but I am concerned that it may cause havoc to my hypothyroidism.

Also, Mrs. D, do you think that calcium supplement has effect on the absorption of Gabapentin. What about fiber supplements e.g. Metamucil and Fiber Choice, do they affect Gabapentin? I am sorry if my questions on spacing sounds fuzzy, but as you would understand when you experience the kind of pain like we do, we would want to optimize the efficacy of each medication.

I have to shorten my message as I may have to be logged off again. My previous message was more detailed of my condition.

Anyway, thank you again so much Mrs. D.
I am truly grateful for all your replies.

Idiopathic PN

The thyroid "warning" is based on ONE study on animals only.
It used only ALPHA racemic ALA and not the purified R-lipoic.
So the other portion of the racemic version may be the culprit, but no one knows.

It has never been done on humans or replicated. Replication by other study groups is typically needed before concrete
conclusions can be brought on medical issues.

When any "negative" thing appears in searches of MedLine, all the quality online sites pick it up and repeat it. In this case it has not been proven at all at this time and not in humans.

People on thyroid treatments, should be monitored anyway carefully for changes. So any effects would show up that way.

I am hypo and I take R-lipoic and have noticed no new signs of my hypo that I suffered with before I was diagnosed. In fact my cold intolerance is better!

It is your choice in the end, but consider the decision is based on very little evidence.

I'd take the gabapentin by itself spaced a long way time wise from any mineral supplement. Magnesium is ++ (called divalent) like calcium and iron are and it has shown to reduce gabapentin's absorption in the GI tract. Gabapentin is already not well absorbed under ideal conditions.

Fiber is well known to complex out some drugs. Fiber will prevent thyroid hormone from being absorbed at all!
I would space out fiber as well, away from gabapentin AND thyroid replacement hormones.

I do have to agree with Mrs. D. I take R-Lpoic as well. Also, take Synthroid on an empty stomach first thing in the a.m. I do not see any problems stemming from the R-Lipoic while using Synthroid.

The one thing that is most important I have learned, thru experience and internet, DO NOT use a generic for Synthroid. Brand only (synthroid) should be used; never generic. While it may have same ingredients, amounts are different. When I used the levothroxine, it did make a difference in my numbers and showed I needed to raise the amount. I asked my endocronologist to let me stay on the same dose; but change to check Brand Only on my subscription for Synthroid only. Went for blood work three months later; I did not need a change. That was about 3 years ago and have stayed on the same dose continuallyl

I was diagnosed with Hyperthroid (Graves Disease) about 16 years ago. Was treated with tapazole for a few years. Went into remission for a couple of years. I have been hypothroid now for over 5 years. Ever since my throid disease started, about 16 years ago, i have gone to an endocronologist, specializing in throid disease.

Every 4 to 6 months, I have blood work done testing the Throid. Because of this, we have been able to know when I had gone from one, remission; now hyperthroid which I will probably be the rest of my life.

I admit when I first started the R-Lipoic, I would feel a little hyper so I stay on the 100 mg's and do not go any higher. In the hope of the possibility of regenerating nerves, I take MethylCobalamin (Vit. B12), Doctors Best Benfotiamine 150mg's, and Doctor's Best Stabilized R-Lipoic Acid.

I believe my PN is caused by spine surgery over 5 years ago compressing major nerves, plus additional surgeries, bladder, etc. I have not done testing to find out the cause for sure. I don't think it would make any difference.

(Gerry)

@ Idiopathic:

I forgot to mention the "fix" for being logged out.

When you log in there is a little box next to your name field.
It says "remember me"....and if you check it you won't be auto-logged out for time issues. Then you can take your time typing in any reply box.;)

I always LOG OUT...when I leave, as this will clear those cookies created.

Thank you so much Mrs. D!

Sometimes, when the pain is reduced to a tolerable level, I find humor in the schedules of my day. It seems that my day revolves around observing what medicines to take at what time. Please give me your th oughts on my spacing:

1. 5 AM - Synthroid (empty stomach)
2. 6 AM - VB12 - methylcobalamin (empty stomach)
3. 7 AM - Gabapentin, then I i eat breakfast
4. 9 AM - Vitamins and supplements
5. 10 AM - Calcium supplement
6. 2 PM - Gabapentin
7. 4 PM - Calcium supplement (I need to take this 3x a day due to an early sing of osteoporosis)
8. 5 PM - Fiber supplement
9. 7 PM - Gabapentin
10. 9 PM - Fiber supplement (I need to take another fiber before sleeping due to the effect of gabapentin on my BM)

You see Mrs. D, with this spacing, I could not follow the 3x a day for my calcium because I dont know when to squeeze calcium knowing it will affect the gabapentin. :)

I will try the R-Lipoic Acid.... I will start on the lowest dosage. Can I take it together with my other supplements at 9AM?

May I know what medicine/s are you taking for your neuropathy? Gabapentin is my first medication and I think I will stick to it. My 2nd neuro told me during my last visit that she will consider giving me Cymbalta if my symptoms do not improve. Is this a good combination for neuropathy?

Thank you very much!!! I truly appreciate your generosity of sh aring your time and information.

Idiopathic PN

P.s. I checked the "remember me" box. Thanks again!!!!

Hi Gerrry,
Thank you for your thoughts. I am taking the brand Synthroid and not the generic. Eversince I had my total thyroidectomy, i was on the same brand for years now.

Idiopathic PN

The R-lipoic stablized is for empty stomach too.
I guess the time to take would be with the B12.

Thank you so much. You dont know how grateful I am for your time and kindness. I dont know of anybody in my family or among my friends whom I can compare notes. That is why I am so grateful I discovered this community.

Is the combination of Gabapentin and Cymbalta effective for neuropathy? My neuro mentioned that if nothing improves with Gabapentin, she will combine my medicine with Cymbalta.

Thank you.

@Idiopathic: Just wanted to say that, while you may feel alone, you are not, and this forum is a great place — one of the few, certainly — that offers both sensible, well-considered information and a sense of real, respectful community.

Good luck.

mrsD, are you saying this because Idiopathic has so few choices in his schedule? Because I thought that you had said that B12 should be taken alone because the r-lipoic might have inactive ingredients that would interfere with the absorption of B12.

Thanks.

Idiopathic has very few windows of opportunity, with all that fiber and calcium.

There is very little in the Lipoic to affect B12. B12 is absorbed by food and fiber, reducing availability to the passive action at the villi of the intestine. It is a mechanical thing like a sponge.
This is assuming that the intrinsic factor is not working.

The other option is to only take fiber once a day.

Then, could I take B12 with r-lipoic and Acetyl l-carnitine?

I would think so. As long as you take lots of water, to dilute them all out. Say 8 ounces.

Fiber is a no no. Volumes of food are problematic, etc.

Acetyl Carnitine I think can be taken with food. It is the lipoic that has the solubility issues.

However, this link suggests empty stomach for the carnitine, but not
absolutely:
https://physicianformulas.com/store/...p?idproduct=17

This is interesting. The link above says not to take acetyl carnitine with anti-seizure meds at the bottom of the page.

That comment is because they don't know the answer.

In fact one seizure drug, Depakote, has been shown to DEPLETE
carnitine. There have been deaths from this.

Like I said before, the sites on supplements can all vary.
Notice also it is for "seizures" the warning was made.
Not for people take anti-seizure meds for PAIN control.

No one really knows what causes some seizures in humans. Some triggers are never discovered. These doctors have liability attached to giving advice on the internet. There are always disclaimers when doctors are involved.

Thank you.

Tonight is bad for my pain. I could not sleep due to the prickly, jabbing "pins and needles" in my legs. My feet are painful.
It is during this moment that even how much I try to be inspired or keep my head/spirit up, it is just so difficult.

It is harder because I see my husband suffers too.

Mrs. D, can I use 2 hours as window between calcium and gabapentin? And 2 hours between fiber supplement and gabapentin?

Thank you.

Though you mentioned that Depakote has shown to deplete carnitine when its used for seizures ....does this also apply to gabepentin?

Thank you.

There are no listed depletions for gabapentin yet.
However some doctors, lump this drug in with other antiseizure
drugs ..but data on that is not available.

The general depletions for anti-seizure medications include
calicum and Vit D. Some of them deplete folate too.

Depakote is the only one I've seen with carnitine listed.
The reference I have states also the family of antivirals used for HIV treatment as affecting carnitine levels.

Some articles do - some just list the majors. You could google: peripheral neuropathy causes and read some articles. Some folks have found that some spreadsheets created by a member here - Liza Jane - are helpful in getting and organizing tests. You can find them and more on her website:
http://lizajane.org/

Finding Clues: Many of us keep pain journals, tracking pain levels, symptoms, meds taken, activities, etc., and over time, we can find some things that help or hinder.
Google: pain journal template for some examples, look them over, then make/customize your own for your particular needs.

We do a lot of our own research as well, reading articles, discussions & threads here, and find some things to try from others' experiences. My philosophy there is, If it can't hurt to try it, then it can't hurt to try it, and to be safe, run it by your doctor first - sometimes a phone call or email will do, and keep him/her informed.

I've found supplements that improved my symptoms enough that I don't need prescriptions for my PN. It's probably best to try one at a time for a month or two rather than taking a "shotgun approach" (starting several at once). If something helps, stick with it. If it doesn't, discontinue (save your money) and try something else. There are certain foods I've found that aggravate my symptoms, so I avoid them. We're all different, and different things/combinations work for each of us.

By keeping a journal (and possibly the charts & spreadsheets) and reviewing them with your doctor, something may surface that leads to your cause (if there is one). Help your doctors help you. ;)

Hope this helps,

Doc

Thank you Mrs. D.

Can I use 2 hours as window between calcium and gabapentin? And 2 hours between fiber supplement and gabapentin?

I would take the fiber with food.

Gabapentin can be taken with some food:
http://www.ncbi.nlm.nih.gov/pubmed/9562133

If you are taking high dose Vit D? I would cut back on calcium to the recommended 600mg a day...that would be one dose.
That should make your schedule easier.

Also I'd do the fiber only once a day too.

I have osteopenia as of last year. Does taking high dosage of Vit D (I assume its Vit. D), will boost my system to make enough calcium to prevent progression? I know this is no longer directly related to neuropathy, but i was just hoping you have some information that you can share with me.

Thank you Mrs. D, as always!

If you are taking high dose Vit D3...the OTC one, it will eventually increase absorption of Calcium from your food, quite a bit.

Some cardiologists are recommending lower calcium supplementation for this reason, to prevent hypercalcemia.

If you eat cheese, drink milk, or eat yogurt, and have veggies like broccoli, and greens, you may not need high dose calcium in supplement form. I cup of yogurt can have 400mg of calcium in it.
Lactaid milk is calcium enriched, and so are some orange juices.

Taking magnesium also improves osteopenia, as well as B12.
There is even a study showing Omega-3s help.

http://www.barleans.com/literature/f...eoporosis.html
Osteopenia is the term for calcium loss in bone in younger patients. But the process is the same.

I drink a lot of milk, but I dont like yogurt. I guess, I need to include yogurt in my diet.

Omega 3 is part of my daily regimen.

thank you.

Thanks Doc!

After my NCV, EMG and Lower Extremity Doppler, my neurologist told me today that I have a Small Fiber Neuropathy.

She suggested that I should have a skin biopsy. My previous bloodworks on antibodies or autoimmune diseases are all negative, but she said that with skin biopsy, there might be some autoimmune or antibodies which can be detected but did not show on my previous bloodworks. Me and my husband were very excited hearing that there is still a chance to find a cause for my painful symptoms.

I hope anybody in the group who have had skin biopsy can share with me their experience/s and the success in finding the culprit, if any.

Thank you.

Doc,
 

You mentioned finding supplements that have improved your symptoms for your PN. Would you mind sharing what they are. I know all things do not work for everyone; but find your post quite interesting and really would appreciate your input. For the past few months I have been taking 2mg's of
MethylCobalamin B12, Stabilized R-Lipoic Acid 100 mg, and Best Benfotiamine 150mg's twice a day.

Thanks,
(Ger)