Hi Folks

I have Suspected PN for about a couple of months. I have a neurologist appointment next month. Meanwhile , I am combating my neuropathy with the following supplements:

R- Alpha Lipoic Acid (300mg X 2 times daily)
Benfotiamine B1 (300mg x 2 times a day)
Methylcobalamine B12 (1000mcg daily)

I also take the following prescription meds : allopurinol 200mg/daily for gout/uric acid and levothyroxine 0.05 mg for hypothyroidism.

To this I have added acetyl l-carnitine (1000mg/daily) to the mix. The symptoms seem to have improved a little bit lately, but I am concerned about my dosing and possible interaction between levothyroxine and acetyl l-carnitine.

Any comments /advise please??

I,too, have hypothyroidism and I have been taking the Nerve Support Formula. I've been having symptoms of my thyroid being low and was on the verge of calling my doctor when I just happened across some important information. That Support Formula has R-Alpha Lipoic Acid in it. R-Alpha Lipoic is often used to help Peripheral Neuropathy. But - it also lessens your body's ability to convert T-4 to T-3. My doctor knows that I'm taking that formula but didn't warn me about the consequences to my thyroid levels. The information I've found says that I can continue taking the formula but my doctor needs to adjust my thyroid medication. I'll be calling my doctor this morning about this.

Plus, as you probably know, low thyroid levels can cause peripheral neuropathy. So keep a close eye on your thyroid levels.

The formula has helped me in a limited way but not a great deal. But perhaps the effect on my thyroid levels has caused that limitation. So I plan to get my medication adjusted and continue the formula for a while longer to see what happens.

I was wondering what you think of Phosphatidyl Complex. I saw it in one of those combination nerve support supplements and also a few posts on brain health. The blurb about it on the supplement page said "Phosphatidyl Complex contains lipids that comprise 76% of the myelin sheath" which I found interesting. Have you researched this supplement?

Also, I'm curious if any enzymes like bromelain have any effect. Thanks!

To the best of my knowledge, there is only a study on animals showing ALA...mixed version of lipoic acid... had an effect on T4 conversion.

R-lipoic does not appear yet in studies in humans demonstrating this effect.

People with thyroid issues, may just need adjustments periodically.
Low zinc and selenium are also factors in the enzymes that convert T4 to T3 in tissues. You can get low in zinc if you take acid blocking drugs, or ACE inhibitors for blood pressure.

Since ALA has been used for over a decade in Europe, human studies have not been done or anecdotal papers have not appeared in regards to humans having this effect with the supplement.

What lipoic acid may do however, is lower biotin utilization because it shares a cofactor transporter in the body. So chronic use of lipoic may need biotin to be added daily...preferably taken at a different time of day.

Years ago, started with Hyperthroid; doctor prescribed Tapazole. Eventuall went into remission for a couple of years. For the past 8 or 9 years have been hypothroid and take synthroid daily. But, every since I was found to have throid disease; have had bloodwork done every 4 -6 months, and a doctor visit the following week. The only time, since being hypothroid, I had reading change was when I used a generic instead of the brand synthroid. I read, on the internet, that in the case of hypothroid DO NOT use a generic. While everything shoudl be the same; it is not. I asked my doctor not to raise my prescription; but to put "Brand Only" on my prescription and started using Snythroid daily. Went back for bloodwork three months later and everything was within normal range again. Did not change doseage; only the Synthroid Brand. This had been a few years now and still within normal and no prescription change.

Just a little "did you know" using a generic could change outcome of blood test.


(Gerry)

bump for new members:

Gerry,

This is an old post but I thought of sharing my experience on generic Synthroid. For reasons I dont understand and neither my endocrinologists (including my endoc back in my country), whenever i shift to the generic version, my thyroid function will be out of range. My doctor here in the US commented that he has some patients like me who do not respond well with the generic Synthroid.

Mary

thanks txgal51! Just wanted to know if you still the nerve support formula? And is it working. Are you still pretty much cured? Thanks!!

Background:

Prior to developing my PN, I was already taking:
B Complex
Fish Oil
Magnesium
Calcium
CoQ10

Since developing PN, I added:
Acetyl-L-Carnitine 1000 mg/day
R Lipoic Acid 200 mg/day
Thiamine 100 mg/day
Methylcobalamin 5000 Mcg/day
Biotin 5000 Mcg/day
D3 2000 IU/day
Iodine (kelp) 300 Mcg/day
(I had no improvement after taking these supplements for several weeks to several months.)

After reading about Metanx, I decided to try taking the equivalent supplements. I was already taking the methylcobalamin, so I added in Solgar Metafolin 800 Mcg/day starting last friday. I also discontinued the B Complex, since I didn't want to take the folic acid in the B Complex along with the metafolin.
I had an almost immediate positive response. Felt a little better Friday, felt significantly better over the weekend, and by Monday my pain was more like a "mild discomfort".
Unfortunately, Tuesday things started turning back the other way, and today things are back to where they were before I started.

At this point, I'm not sure if the improvement was from the Metafolin, or just a random period of temporary improvement along the roller coaster that is PN.

I have read that with certain supplements, a period of improvement followed by regression may indicate the need for a higher dosage. Not sure if that applies to Metafolin or not - so do you think it makes sense to increase the dosage beyond 800 Mcg/day? (I know the standard Metanx dosage is much higher than that, but I'm trying to be a bit conservative here.)

Also, do you think I should add in the P-5-P now, or wait until I get the Metafolin dosage figured out. I prefer to add things in 1 at a time, but is this a case where you need all 3 ingredients to work together?

Thanks for any help you can provide.

If you had a big change with methylfolate...I'd suspect you have the DNA mutation problem.

You could increase to two of them a day, and see what happens.
You already use the methylB12 so it is safe to increase the folate too.

Often when a deficiency exists and you start to repair it...there can be a "priority factor" where the body sends the newly offered item, to various spots in the body where there is need...like the brain, bone marrow, etc. So increasing a bit may give more opportunity for the folate to work.

You can add in the P5P whenever you want. I'd wait a few days to see what the extra folate does. The P5P works mostly in the methylation chemistry and formation of neurotransmitters. It is also protective of the heart. P5P is not involved with the methylation DNA transferases that I know of...but works along side with other systems.