High dose Thiamine worsen symptoms.

[Soren]

As some of you who follow my posts might know my mother has Parkinsons disease and the only treatment that has been successful in improving her symptoms has been cyproheptadine.

Recently she decided to start taking high doses of thiamine as there has been some good evidence that it had benefits for PD patients. However there have been a few times now where her symptoms have been made significantly worse. Great increase in anxiety and shaking.

I think this is because the thiamine is essentially reving up her metabolism too fast and body cannot deal with it. Her liver, glycogen and energy metabolism simply cannot cope with the thiamine. So when she takes the high dose thiamine, the body in an attempt to get enough glucose to use the thiamine raises stress hormones even higher (cortisol, serotonin, adrenaline) which makes everything even worse.

I've always told her to take things slow and make sure she has eaten enough before taking the supplements (although I think she is ignoring me/forgets).

Anyone have any thoughts besides my own hypothesis as to what could be causing the worsening of symptoms?

I want to get her some labs using @haidut service but I'm not sure what to get.

 

[LadyRae]

@Soren
Hello and good morning! I have also been using medium and high dose B1 to see how it goes for energy purposes. I find a huge difference in the types of B1- I've tried thiamine HCL, bentothiamine, Idealabs' Energin, and also Thiamax allithiamine.

So far my favorite by far is the Energin, applied under the tongue. I never take the full dosage at once! The most I can personally take at one time is 15 drops after a meal otherwise I am too energetic and have the symptoms similar to what your mother has been experiencing, anxiety and sweating....

You didn't mention in your post what type of B1 your mother is getting or the dosage and frequency, but especially when dealing with a suppressed metabolism and illness, this matters a lot. I totally agree with your supposition that she is not tolerating the B1 well because of her suppressed state....I would recommend the Energin for her because she could adjust the dosage according to her meal frequency and tolerance.

 

[joaquin]

As some of you who follow my posts might know my mother has Parkinsons disease and the only treatment that has been successful in improving her symptoms has been cyproheptadine.

Recently she decided to start taking high doses of thiamine as there has been some good evidence that it had benefits for PD patients. However there have been a few times now where her symptoms have been made significantly worse. Great increase in anxiety and shaking.

I think this is because the thiamine is essentially reving up her metabolism too fast and body cannot deal with it. Her liver, glycogen and energy metabolism simply cannot cope with the thiamine. So when she takes the high dose thiamine, the body in an attempt to get enough glucose to use the thiamine raises stress hormones even higher (cortisol, serotonin, adrenaline) which makes everything even worse.

I've always told her to take things slow and make sure she has eaten enough before taking the supplements (although I think she is ignoring me/forgets).

Anyone have any thoughts besides my own hypothesis as to what could be causing the worsening of symptoms?

I want to get her some labs using @haidut service but I'm not sure what to get.

I'm still trying to work out a good way for me to take thiamine. I see recommendations on here but just don't want to shell out more money to play a trial and error game as I've spent a fortune over my lifetime. I know that sulbutiamine does not work for me. I also now know that benfotiamine gives me insomnia.

If I had parkinson's, I would look into ketone esters. It is an expensive product but I've seen online those with PD respond immediately. Also, maybe THC products, for short term use.

 

[TheSir]

This is the famous paradoxical reaction, also known as the refeeding reaction. It's seen as evidence for the underlying deficiency. It's temporary but might require additional mg, potassium and b complex supplementation. Lonsdale has written a lot about this on his site hormonesmatter.cpm

 

[xeliex]

As some of you who follow my posts might know my mother has Parkinsons disease and the only treatment that has been successful in improving her symptoms has been cyproheptadine.

Recently she decided to start taking high doses of thiamine as there has been some good evidence that it had benefits for PD patients. However there have been a few times now where her symptoms have been made significantly worse. Great increase in anxiety and shaking.

I think this is because the thiamine is essentially reving up her metabolism too fast and body cannot deal with it. Her liver, glycogen and energy metabolism simply cannot cope with the thiamine. So when she takes the high dose thiamine, the body in an attempt to get enough glucose to use the thiamine raises stress hormones even higher (cortisol, serotonin, adrenaline) which makes everything even worse.

I've always told her to take things slow and make sure she has eaten enough before taking the supplements (although I think she is ignoring me/forgets).

Anyone have any thoughts besides my own hypothesis as to what could be causing the worsening of symptoms?

I want to get her some labs using @haidut service but I'm not sure what to get.

With thiamine, I feel the need to eat a lot more. Make sure she is getting enough carbohydrates as well as other B-vitamins. I think of thiamine as the fire-starter. It starts the fire, but we need to support it.

 

[Ben.]

Manganese, Magnesium, Potassium and B2 and/or other b-vitamins may be necessary to make high dose thiamin work.

 

[Momma]

Anyone have any thoughts besides my own hypothesis as to what could be causing the worsening of symptoms?

Is she taking it orally? In a pill or capsule form?

If so, I would stop.

The cypro is decreasing her serotonin; and the oral thiamine is increasing it.

Disregard this comment if it’s not oral.

This is my gross assessment only. I wish both you and your momma great health.

 

[Peatress]

Thiamine must be taken with magnesium otherwise it will increase serotonin and that makes inflammation worse. @mostlylurking wrote a post on this here

 

[mostlylurking]

As some of you who follow my posts might know my mother has Parkinsons disease and the only treatment that has been successful in improving her symptoms has been cyproheptadine.

Recently she decided to start taking high doses of thiamine as there has been some good evidence that it had benefits for PD patients. However there have been a few times now where her symptoms have been made significantly worse. Great increase in anxiety and shaking.

I think this is because the thiamine is essentially reving up her metabolism too fast and body cannot deal with it. Her liver, glycogen and energy metabolism simply cannot cope with the thiamine. So when she takes the high dose thiamine, the body in an attempt to get enough glucose to use the thiamine raises stress hormones even higher (cortisol, serotonin, adrenaline) which makes everything even worse.

I've always told her to take things slow and make sure she has eaten enough before taking the supplements (although I think she is ignoring me/forgets).

Anyone have any thoughts besides my own hypothesis as to what could be causing the worsening of symptoms?

I want to get her some labs using @haidut service but I'm not sure what to get.

It's important to learn as much as you can about the options for taking thiamine for Parkinson's Disease. Dr. Costantini always used thiamine hcl for his Parkinson's Disease patients. The dosage amount was based on the patient's weight. There is information about it here along with what he would do if there was a negative reaction. He did NOT recommend to just plow through the negative reaction as Dr. Lonsdale did. Dr. Costantini used thiamine hcl; Dr. Lonsdale used TTFD.

from Dr. Costantini's site (translated from the original Italian):

Finding the Correct Dose​

The correct dose varies on the basis of:

• Duration of the disease (the longer is the duration of the disease, the higher will be in general the doses;
• Severity of the symptoms and rate of progression of the disease;
• Weight and physical characteristics of the patient;
• Sensitivity/responsiveness to the treatment.

In order to determine the right dose, we usually stick to the following protocol.


In case of recent onset of the disease in patients whose weight is between 50 to 65 kg (110 – 145 lbs), we begin the therapy with two grams of thiamine per day, before and after lunch.


In case the patient weighs more, the dose can be three grams per day, always divided into two administrations.


Oral thiamine should not be taken with juices or any sour beverage, water only.


The equivalent Intramuscular administration of thiamine would be:

• For 2 grams/day orally = 1 x 100mg injectable solution per week;
• For 3 grams/day orally = 2 x 75mg injectable solution per week;
• For 4 grams/day orally = 2 x 100 mg injectable solution per week.

NOTE: When it is administrated through intramuscular injections treatment could lead to allergic reactions (we observed 4 cases in 2,500+ patients). Mainly there are dermatological rushes and allergic phenomena.


NOTE: It is not suggested to use IM high dose thiamine for patients under treatment with anticoagulants (e.g. Coumadin, Sintrom) since the injection may cause a hematoma in the location of the shot.


In order to obtain the same effects of the intramuscular dose, the oral dosage should be around 140 times higher. For instance, 100 mg injected once a week have the same therapeutic effect that 2 grams per day x 7 days (total 14,000 mg, thus 140 times 100 mg) have if administrated orally.


The correct dose of high-dose thiamine therapy reduces greatly the symptoms. What remains (particularly tremor is especially tough and resists most therapies) responds readily to the use of l-dopa.

If the Dose Exceeds Patient Need​

First of all we learned that if the initial dose of thiamine is too high for the patient, they will experience a worsening of the symptoms after a few days characterized by an initial improvement.


In this case we invite the patient to halt the treatment with high dose thiamine for a week or so, and when the worsening regresses we restart the therapy with lower doses, often half the original dose.


In our experience the correct dose should not lead to collateral/unwanted effects, only to benefits for the patient.


This includes an improvement of UPDRS symptoms by at least 50%, and normalize the pull test.
-end-

I found this book to be very good: Thiamine and Parkinson's Disease — Out-Thinking Parkinson's
Although the author followed Dr. Costantini's information and advise, she uses sublingual thiamine mononitrate. It is available here. Please note that the price for the sublingual thiamine is about $7.00 for 100 tabs or $.07 per tab; this equals to $2.10 cost per month if taken one per day. Some people find that they do better on less than one per day. Instructions for how to take it successfully are here, written by the author of the book suggested above.

 

[Peatress]

Thank you @mostlylurking

 

[mostlylurking]

Thank you @mostlylurking

Happy to try to help.

 

[Don]

Thiamine must be taken with magnesium otherwise it will increase serotonin and that makes inflammation worse. @mostlylurking wrote a post on this hereunts

Did you find a dosage of magnesium to B1 ratio or amounts ? Thanks

 

[Giraffe]

Anyone have any thoughts besides my own hypothesis as to what could be causing the worsening of symptoms?

Years ago I experimented with a high dose of thiamine (300 mg in one sitting) and had a negative reaction: upset gut followed by kidney pains. If your mom's gut is as sensitive to a high dose of thiamine as mine I think this would explain the anxiety.

I am linking below my post from back then. (see the linked post and the next one)

Thiamine Reduces Both Lactate And Ammonia

Nukraft

raypeatforum.com

 

[purple pill]

Maybe thiamine just isnt the limiting energy factor in this case? Hasnt haidut touched on parkinsons quite a few times as being a kindoff insulin resitance of the brain and using stuff like b2, b5, chromium, high dose biotin(aswell as b1 obvs) and aspirin to restore insulin sensivity to get energy to the brain where most needed? Wonder if lithium would be helpful aswell, lowering ammonia in the brain and relieving anxiety along the way also been reading alot about the high silicon content in beer (alcohol free) lately and its abilty to remove aluminium from the brain, not sure if aluminium has been implicated in parkinsons but sure it wouldnt help. But yeah sorry just throwing some stuff out there in the hopes it may be of some use

 

[mostlylurking]

Did you find a dosage of magnesium to B1 ratio or amounts ? Thanks

Dr. Costantini discussed it somewhere on his site but not sure where, possible in the FAQs.

From memory, Dr. Costantini favored a small amount of magnesium, something like 75mgs/week. He discouraged taking a single supplement that contained both thiamine hcl and magnesium. He did not want his elderly patients to experience any digestive upsets.

I personally take a lot more magnesium than 75mg/week because I had some pretty severe symptoms of muscles spasming and locking up, usually at night when trying to sleep. The magnesium resolved my problem; it was clear to me that I needed the magnesium. I never experienced any digestive upset with magnesium while taking thiamine hcl; the thiamine seemed to improve my tolerance for magnesium.

 

[mostlylurking]

Did you find a dosage of magnesium to B1 ratio or amounts ? Thanks

from Dr. Costantini's FAQs:

7. What other vitamins or supplements should I take to optimize the benefit from thiamine such as magnesium, other B vitamins or vitamin D?


In our experience, we do not add multivitamin compounds to the treatment with high dose thiamine. Thiamine HCL usually is effective against the symptoms of PD (as well as the other diseases we have studied) alone.


In the case in which the response of some patients requires a further enhancement of the therapy, we may add low doses of other group-B vitamins and magnesium.


It should be noted that vitamin B6 facilitates the action of peripheral dopamine-decarboxylase. Since Madopar and Sinemet contain strong inhibitors of the peripheral decarboxylase, it is rare that vitamin B6 produces negative effects. However, even if rarely, it may happen that high doses of vitamin B6 may reduce the quantity of l-dopa which enters the brain and create a worsening of the symptoms within a few days.

33. If I need to stop taking other supplements to start thiamine therapy, when can I start to add them back?

Q: It seems that your preference is for most people to stop use of all supplements in order to start thiamine therapy and I assume this is so that you can have the clearest picture of exactly how these patients are responding to the thiamine therapy itself and in turn this helps you to determine if dose adjustments are needed? You are also trying to make sure that the other supplements are not clouding the effect of thiamine therapy?

If this is correct, at what point can a patient start to add back supplements they were already taking as part of their daily regimen?

A: That is correct. We usually prefer to have a glimpse of how the high dose thiamine performs alone before evaluating the need for further supplements to aid its absorption (e.g., magnesium, etc.).

Usually, after 3 months from the beginning of the therapy, we reach the point where the thiamine protocol has been correctly tailored to the needs of the patients and in case the regression of the symptoms still leaves room for improvement, we add other supplements and observe possible changes for further 3 months.

Often times the action of thiamine alone is satisfactory for the patients and rarely we need to add other supplements, which are in any case in small doses.

 

[Don]

from Dr. Costantini's FAQs:

7. What other vitamins or supplements should I take to optimize the benefit from thiamine such as magnesium, other B vitamins or vitamin D?


In our experience, we do not add multivitamin compounds to the treatment with high dose thiamine. Thiamine HCL usually is effective against the symptoms of PD (as well as the other diseases we have studied) alone.


In the case in which the response of some patients requires a further enhancement of the therapy, we may add low doses of other group-B vitamins and magnesium.


It should be noted that vitamin B6 facilitates the action of peripheral dopamine-decarboxylase. Since Madopar and Sinemet contain strong inhibitors of the peripheral decarboxylase, it is rare that vitamin B6 produces negative effects. However, even if rarely, it may happen that high doses of vitamin B6 may reduce the quantity of l-dopa which enters the brain and create a worsening of the symptoms within a few days.

33. If I need to stop taking other supplements to start thiamine therapy, when can I start to add them back?

Q: It seems that your preference is for most people to stop use of all supplements in order to start thiamine therapy and I assume this is so that you can have the clearest picture of exactly how these patients are responding to the thiamine therapy itself and in turn this helps you to determine if dose adjustments are needed? You are also trying to make sure that the other supplements are not clouding the effect of thiamine therapy?

If this is correct, at what point can a patient start to add back supplements they were already taking as part of their daily regimen?

A: That is correct. We usually prefer to have a glimpse of how the high dose thiamine performs alone before evaluating the need for further supplements to aid its absorption (e.g., magnesium, etc.).

Usually, after 3 months from the beginning of the therapy, we reach the point where the thiamine protocol has been correctly tailored to the needs of the patients and in case the regression of the symptoms still leaves room for improvement, we add other supplements and observe possible changes for further 3 months.

Often times the action of thiamine alone is satisfactory for the patients and rarely we need to add other supplements, which are in any case in small doses.

Thank you for all this

 

[Jonk]

I'm currently experimenting with high doses b1. Eating plenty of food, starches, salt and fruit juice helps preventing hypoglycemic feelings - cold hands and feet, adrenaline etc

 

[Don]

I'm currently experimenting with high doses b1. Eating plenty of food, starches, salt and fruit juice helps preventing hypoglycemic feelings - cold hands and feet, adrenaline etc

Please keep us posted.

 

[Peater]

I'm currently experimenting with high doses b1. Eating plenty of food, starches, salt and fruit juice helps preventing hypoglycemic feelings - cold hands and feet, adrenaline etc

This is the one thing that contradicts Dr Lonsdale's work - he says to supplement B1 AND eat low carb. If B1 is "used up" by carbs, I can't see the harm in eating carbs if you are eating sufficient B1. As you say, without carbs it could just cause a stress response.