Call for a more complete vitamins blood t... - Cure Parkinson's

Cure Parkinson's

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Call for a more complete vitamins blood testing, especially b6.

Esperanto profile image
32 Replies

I would have preferred to write about my coping with PD at a later stage, but in view of recent events I would like to warn you about the possible consequences of incomplete examination.

After being diagnosed 1.5 years ago at 65, I found the development of the disease to be (too) fast. There is still no any balance and certainly no "honeymoon" and that worries me. The only (visible!) complaint at the time, a hand tremor, has expanded to a huge list of typical PD symptoms, with the enormous fatigue and an almost simultaneous peripheral neuropathy in my feet and lower legs bothering me most. This despite the initial effectiveness of the standard medication L/C (increased from 400/40 in a relatively short time to 1000/130) + Azilect.

However, the relationship of PD and neuropathy is certainly not automatically recognized by the physicians, but to me the "coincidence" seems just a bit too easy. As a new HU member I was able to experience that I am indeed not the only one. On my search for the link between PD and N, the interaction between the B vitamins and the formation of dopamine came to light, especially the significance of B6 as so clearly described by member Jesus Marquez Rivera in his "Parkinsons Here and Now". The consequences of the love-hate relationship between the L/C medication and B6 appear to be far-reaching. The B6 necessary for levodopa to do its job is broken down by the equally indispensable carbidopa component, resulting in insufficient dopamine production. Moreover, a too low B6 level ( just like too high!) is extremely harmful and can cause irriversible neuropathy. Without any cooperation from my physicians, I was able to see for myself through additional blood tests at an earlier stage that I am quite deficient in vitamin B12 and B9 despite the extra vitamins taken as a precaution. Yesterday I also received the results of my B6 level. It turned out to be almost zero (1.1 ugl) far below the minimum standard of 8.7 ugl applicable here in France. Rather shocking….

I am glad to have clarity. Probably of crucial importance to break the negative spiral. The undoubtedly proposed further increase in medication by my neurologist will, based on the current information, have to be reduced precisely in conjunction with a balanced package of nutritional supplements including an optimal B6 dosage.

Of course, I am also angry. With more extensive blood testing at the time of diagnosis and monitoring of my PD, I probably could have avoided this unnecessary damage. The neuropathy will further limit my ability to walk in the future and thus the all-important extra exercise. But John Pepper, you can still count on me to try this with fast walking ;)

Finally, a call to all neurologists! Make a full blood test, including the values of all vitamins involved in the process and treatment of PD, as standard procedure. An annual checkup of B6 should even be made mandatory!!! If you do not get any cooperation: DIY!

Please let me know whether elsewhere such extensive blood tests are automatically applied to Parkinson patients. If such extreme B6 values are measured more often and about the possible influence on the medication and disease process.

Thank you very much in advance for your response. Sorry for my broken English…. If it's easier you can also write me in D, F or NL.

I am enormously grateful that we can learn from each other in this way and cope better with our PD. Take care

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Esperanto
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32 Replies
MBAnderson profile image
MBAnderson

Welcome. Many are on this site because of frustration with doctors. You seem well on your way of being your own advocate -- which is essential.

Esperanto profile image
Esperanto in reply toMBAnderson

Such a welcome feels very warm. It becomes clear that you are not alone and that is new to me. It gives me strength to find a way to deal with this. Thank you MBAnderson and others for your response and understanding.

park_bear profile image
park_bear

I posted some important information about B6 and carbidopa/levodopa here:

healthunlocked.com/cure-par...

and about B6 toxicity here:

healthunlocked.com/cure-par...

Nothing wrong with your English – no apology necessary!

I would not expect MDs to take the lead in testing vitamin levels. Some even wrongly recommend avoiding B6 for people with Parkinson's.

Esperanto profile image
Esperanto in reply topark_bear

Merci, for this additional information. It provides more insight into the matter that will hopefully allow the treatment plan to be adjusted in the right way.

Michel0220 profile image
Michel0220

Thank you for making such an important point Esperanto. I have had 3 neurologists and none has ever thought of suggesting a blood test (like you, I have done those independently). There would be great benefits for the patients if they could take a more holistic approach rather than sticking to just the prescription pad.

JeanieBeanie profile image
JeanieBeanie in reply toMichel0220

Where did you get your blood test in UK Michael?

Michel0220 profile image
Michel0220 in reply toJeanieBeanie

Hi JB

I used mophlebotomy.co.uk/

The exact nature of the tests was determined by my nutritionist but I would not necessarily recommend her.

Just be aware that those tests can be quite expensive. I probably paid between £350 and £500 for the full suite but someone on this forum told me that he had recently paid £800 ...

JeanieBeanie profile image
JeanieBeanie in reply toMichel0220

OMG!

rescuema profile image
rescuema in reply toMichel0220

In the US, it's a lot cheaper when using online lab order using Quest, and does not require Dr's order. Typical insurance won't cover these tests regardless.

For example,

ultalabtests.com/test/compa...

$74 for b6, b9, b12 tests. This test often can be bought for additional 20% discount.

I highly recommend the B vitamins test as well as homocysteine, and all PWP should test regularly.

Life Extension also runs lab sales (Lapcorp) during Spring each year.

lifeextension.com/lab-testi...

lifeextension.com/lab-testi...

HekateMoon profile image
HekateMoon in reply torescuema

wonder if we can use them from Europe..

rescuema profile image
rescuema in reply toHekateMoon

Pretty sure not...

park_bear profile image
park_bear in reply torescuema

Medicare did cover my routine bloodwork. It was ordered by my M.D. I do not know if that makes a difference.

rescuema profile image
rescuema in reply topark_bear

That's great to hear that Medicare covers it for you. I have BCBS and they don't, but it probably would depend on how a specialist is willing to write up for a "routine" blood work for disease monitoring vs a patient request. It's probably best to check with the insurance first especially since I hardly ever hear B6 test being ordered by MDs routinely.

bookish profile image
bookish in reply toMichel0220

I don't have PD but other neuro issues - my NHS neuro did test my B6, but it took two attempts, as the lab refused to do it first time. He was worried that my supplementing was causing neuropathy, but in actual fact it is lowish - still in range, but bottom quartile, so I have increased it.

park_bear profile image
park_bear in reply tobookish

Neuropathy can be caused by the cheap inactive form of B6. The P5P form of B6 is non-toxic even at high levels. See: healthunlocked.com/cure-par...

bookish profile image
bookish in reply topark_bear

Thanks, yes I've only ever taken P5P - neuro still wanted to test, as he didn't understand the difference. But I'm only 7% of range so that has been ruled out as a cause (and symptoms long precede P5P). We have a complicated family B12/folate history. (I thought I'd read something recently about insufficient cellular B12 making it possible to have neuropathy even from P5P (which resolves with sufficient B12), but can't find it. I certainly have heard of people taking B complexes with P5P who have tested high for B6 and had reduced neuropathy after stopping the complex, but of course it could have been due to something else in the complex.) Cheers

park_bear profile image
park_bear in reply tobookish

B12 deficiency can cause all manner of neurological symptoms. Regarding folate, high plasma levels are not a good idea - see my writing here: Folate Supplementation Carcinogenic tinyurl.com/ycdrz5lj

bookish profile image
bookish in reply topark_bear

Thanks, yes I've read your piece before with interest. I don't take a lot of folate, and my level isn't high (it was higher when I was just using a small amount of folic in a multi) but adding methyl(tetrahydro)folate to my B12 made rather a considerable difference (positive) to my symptoms, so I know I needed some. Cyanocobalamin helped, methylcobalamin helped more and methylfolate better again. I think that is why neuro has referred me as this ties with my genetic SNPs, as well as me being the 5th of 6 known generations of B12D or PA. Best wishes

park_bear profile image
park_bear in reply tobookish

>" I've only ever taken P5P - neuro still wanted to test, as he didn't understand the difference."

I suspect this is typical.

Kia17 profile image
Kia17 in reply toMichel0220

Hi Michel, May I ask if you had any changes to your vitamin supplements intake after you received (because of) the blood test results? Thank you.

Michel0220 profile image
Michel0220 in reply toKia17

Hi Kia

Just a few tweaks but nothing major. The supplements that matter most were either prescribed just after my diagnosis (e.g. mucuna, omega 3, curcuma, Q10, magnesium, D3, butyric acid, etc) or chosen by me (e.g. B1, L-carnitin, lions mane, Reishi, NAC, etc).

The blood tests were rather there to confirm that all is fine (PD aside 😄).

Kia17 profile image
Kia17 in reply toMichel0220

Thank you Michel.😊

Deforel_Ch profile image
Deforel_Ch

For B12 if you take antacid or if your stomach acidity is naturally low take this vitamin in the methylated form (methylcobalamin).

JCRO profile image
JCRO

I posted this a while back. Talks about the Schiff Base effect. There's a lot to read:

journeywithparkinsons.com/2...

HekateMoon profile image
HekateMoon in reply toJCRO

Great blog! Thank you

LeharLover62 profile image
LeharLover62

So sorry you went through this! Hubby’s had 5 different neurologists throughout the course and the latest MDS is the first to do a full B vitamin panel. (Thankfully) hopefully this becomes more standard.

HekateMoon profile image
HekateMoon

Welcome to the site.

In Ireland, where i live the protocols for testing, and indeed for neuro visits, are so low i had to figure it all out. Thank goodness this site exist. I trust drs very little at this stage. Keep walking! I do and it helps a lot. Your english is superb. Its also my third language...many of us here from different nationalities. We understand each other if the hearts are open. Stay well and stay in touch. Regards. Chelo

lamboman profile image
lamboman

What would be the perfect blood test for PD besides testing for B6, B9 and B12? Also any gut microbiome testing?

I agree and find it unbelievable that neurologists don't run any blood tests.

Esperanto profile image
Esperanto in reply tolamboman

Good item lamboman! Pretty urgent for me right now. Tomorrow I will see my neurologist (maybe the last time? 😉) and will confront him with my extremely low b6 level. In addition, I only have the values of the also low b9 and b12 available, besides results of the "standard" measurements (here only a very low Creatine level and 10 kg weight-/muscle mass loss in 6 months). What other tests are absolutely necessary to get a complete picture of the imbalance due to PD and medication? Would like some ammunition to do my advocate role properly…

CaseyInsights profile image
CaseyInsights in reply toEsperanto

Here are some useful test you can run to get a overview of your basic health, along with B6, B9 & B12 mention up thread.

Kidney Function

*Renal Profile

Liver Function

*Liver Profile

Methylation

*Homocysteine

Bone Density & Impaired Immunity

*Vitamin D

Iron

*Serum Iron/Ferritin/ TIBC

Sugar Levels

*Fasting Glucose

*Fasting Insulin

*Hba1c

Thyroid Health

*Thyroid TSH T3 T4 RT3

*Thyroid Peroxidase Antibodies

Inflamation

*ESR - (Erythrocytes Sedimentation Rate)

*hs-CRP

Did foregoing test on spouse, with Parkinson’s. Expect your neurologist to say most are a waste of time.

But go ahead anyway!

Esperanto profile image
Esperanto in reply toCaseyInsights

Merci! Very helpful. Indeed, I don't expect my neurologist to suggest this 🙂 However I do expect a more proactive attitude to avoid being behind the (measurable) facts. We will see…

LindaP50 profile image
LindaP50

My hubby is on his 4th neurologist. First one we didn't like at all. The other 2 went into a different field! 4th one is a motor disorder specialist but you could have fooled us.

None of them are even remotely concerned about the vitamins, supplements, herbs one takes.

We learned of hubby's low Vitamin B from the Lyme doctor who did extensive blood work. His body did not absorb Vitamin B's and has since taken a supplement based on the recommendation of the Lyme doctor. Unfortunately, since he was predisposed to PD, his Lyme morphed into PD. Same thing is happening to a neighbor of ours. Told him about the B vitamins and HB1 protocol. He is only 62. My hubby is now 83 1/2.

Stay on this sight and get a wealth of valid information. Continue to be your own advocate. It's a MUST.

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