Thiamin HCI

[procaffeinator]

I don’t know if it’s because I’ve been under more stress than usual but I feel my Parkinson’s symptoms might be increasing. I want ask an opinion. I want to increase my one capsule of 500mg Thiamin in the AM to two in the AM? Or should I take one in the morning and e second at noon? Dr. Constantin is no longer available so I’m reaching out to get opinions. Thank you.

[Hidden]

Parkinson's disease relief:

Diagnosed

2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 5 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... ; …

Parkinson's Relief, Questions and Answers

Guide:

1. Read page, About, open links.,

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document, answer and submit.

4. read Announcements

5. Website: Dr Costantini's guidelines on Parkinson

stopparkinson.org/en/table-...

[procaffeinator]

Thank you Roy. I also take the Vitacost 500 mg once a day. What do you think if I try the increase of one more capsule in the afternoon?

[Hidden in reply to procaffeinator]

Add ? Yes.

Guide:

4. In Files, Dose Adjustment

5. In Files, (2) From and by Dr. Costantini

6. read Announcements

[procaffeinator]

I don’t understand everything you mentioned in your reply but I think you answered yes to my question of taking an additional capsule in the afternoon

[sunvox]

I have posted several times on the latest research with regards to oral dosing of Thiamine HCl. You can find a link to the relevant papers here: healthunlocked.com/parkinso...

but . .

to answer your question directly there will be no difference after one week if you take 2 pills in the AM or 1 in the AM and 1 in the PM. You will achieve the same steady state levels of free thiamine in your blood plasma. Personally I found taking thiamine in the afternoon changed my sleep pattern so I take 2 g (4 pills) all in the AM. I believe Roy recently went down from 2 g twice daily to 2 g in the AM also. I think most people on HU who are trying high dose oral thiamine are taking more than 1 g per day.

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Do you take any other supplements?

[procaffeinator]

Thank you. I used to take one 500 mg of Thiamin in the morning only. Yesterday I took 1 500 mg Thiamin along with my 25 mg Carbidopa in morning and at noon added the additional 500 mg Thiamin.

I take one 25 mg of Carbidopa when I wake up (usually 7AM), then another 5 hours later and the last Carbidopa at 5 PM.

I didn’t feel much of a difference with my sleep but after taking the additional Thiamin at 12, I felt a bit of a very slight head pressure almost like a headache but nothing major.

My real question is to know if adding the additional Thiamin capsule in the afternoon: Is it ok for my health and will it help me with my Parkinson to take the additional capsule? I remember Dr. Constantin stated the dosage would need to be re-evaluated to increase or lower if symptoms change.

And no I do not take any other medications. Thank you for your reply

[sunvox]

Thiamine therapy sometimes has an immediate impact, but if you ask me my educated guess would be that the people who reported an "immediate" benefit were having a strong placebo impact which is well documented in Parkinson's patients as being extremely prevalent.

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The science indicates that IF thiamine is going to help it will only SLOW progression, and that is something you will never be able to feel.

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Thiamine has been studied extensively in humans. You can take many grams per day for your lifetime with no fear of harm, but alternatively it MAY be slowing your disease so to me it's a simple answer of "yes" you should take thiamine daily. How much exactly is really a matter of your personal experience and belief. Maybe build up to 4 g daily over a 3 month period and then come back down to 0 and see if you notice a difference. When I went below 500 mg per day I noticed a HUGE difference in a negative way hence my return to a higher level.

[procaffeinator in reply to sunvox]

Thank you. I wish I could hug you. Your comment helped me a lot

[Despe in reply to sunvox]

Joe,

What do you think about IM injections?

[procaffeinator in reply to Despe]

I don’t know what IM injections are.

[Despe in reply to procaffeinator]

It's B1 HCL vitamin in a vial instead of the pill form.

[Juliegrace in reply to procaffeinator]

IM = intramuscular. It refers to the type of injection.

[sunvox in reply to Despe]

Hi D,

I have posted links to several papers related to the topic of IM Thiamine versus oral, and it is my conclusion that the evidence is very clear that oral thiamine is equal to IM after one week. I believe the reason Dr. C was using IM was based on old papers that were disproven by the more recent research. I can not be certain of that, but I am certain that after one week of taking oral thiamine a person's blood plasma levels of free thiamine can be equal to those achieved via IM thiamine. The question is simply how much equals how much? For that I do not have a clear answer, but I believe the experience of folks here seems to indicate it is somewhere around 2-4 g per day taken orally.

Cheers,

Joe

[procaffeinator in reply to sunvox]

Thank you Joe

[Despe in reply to sunvox]

Thank you, Joe. I feel you are the person to go to for answers to a lot of questions.

[ion_ion]

Make sure do not take too much as can suddenly can increase blood pressure.

To answer your question I would say take both pills in the morning.

[procaffeinator in reply to ion_ion]

I don’t know what that is 🤷🏻‍♀️

[procaffeinator in reply to ion_ion]

I took both Thiamin in the morning with my first Carbidopa and I felt it didn’t impact me at all. When I separated the two capsules throughout the day, I felt a slight pressure headache.

[chartist]

procaffeinator,

If you follow what Dr. Costrantini said about dosing, it is straight forward and simple. A dose of thiamine that is too low will do nothing in terms of symptom improvement while a dose of B-1 that is correct will result only in symptom improvement. Here is question and answer number 18 from the HDT / Thiamine / B-1 FAQ page directly from Dr. Costantini :

18. What are the symptoms if my thiamine dose is too high or too low?

A: If the dose is too high, rarely but sometimes it has happened, can determine the worsening of the symptoms of PD. Sometimes after an initial improvement, if the dose is too high, some symptoms that had disappeared may manifest again. The therapy with high dose thiamine has to lead only to positive effects, if any negative effect is observed by the patient this means that the dose is to be adjusted. A dose that is too low does not lead to any beneficial effect on the symptoms of PD.

Here is a link to the HDT FAQ page :

healthunlocked.com/parkinso...

You said you are taking 500 mg a day. At that dose, you say you think your symptoms may be worsening, but you are not sure if the worsening may be caused by stress. What you didn't say is whether you ever got any improvement in symptoms at your 500 mg dose per day or not. Did you see any improvement at 500 mg per day?

You also said that you added another 500 mg of B-1 per day. Have you noticed any symptom improvement at that dose or possibly a worsening of symptoms? Taking thorough notes during this testing period will be useful for you in the future as it is just too easy to forget little things without the notes.

Art

[procaffeinator in reply to chartist]

I did get improvements significantly, but noticed still there was some extremely minor single twitch of my right foot that existed before beginning Thiamin. After beginning the one dose of the capsule, the one twitch continued and I began noticing there was slight shaking on my right hand for example: when I’d text my left pinky and middle finger or right pinky right ring finger would tremble when I’d have my arm resting when texting. However, the shaking thats happened in my hands are very few times that I can count the times that it’s happened.

I’ve been on Carbidopa for 2 years and began the Thiamin in Feb 2019. I have been under extreme stress, about four deaths this summer and financial stress. I do feel that that has contributed to my symptoms of twitching and some shaking of my hands. I had a very difficult summer and the fall weather hasn’t been easy either. My 2 & 3 year olds that are under my care and watch all day stress me out tremendously. Is it just me or are all Parkinson’s patients more prone to being stressed out under “normal” stress situations? Is stress heightened for us?

After taking the second capsule, I did feel a huge difference. The twitching has stopped a lot more. Once the correct dosage is taken, does it take effect immediately for symptoms to go away?

[chartist in reply to procaffeinator]

procaffeinator,

Yes indeed, you are under a tremendous amount of stress and any PWP will tell you that stress does seem to have a negative impact on PD symptoms!

The fact that you noticed improvement when you added an additional 500 mg to your existing 500 mg dose tells you several important things. One, since you have been on 500 mg of B-1 since February 2019 with no improvement, that dose is too low based on what Dr. Costantini has said, a dose that is too low will show as no symptom improvement. Two,the additional 500 mg of B-1 indicates that 1,000 mg is closer to your ideal dose than 500 mg. In these situations, Dr. C has generally recommended staying at that dose for an extended period of time to see how you do at that dose. It is helpful to take notes for awhile after a dose adjustment because it is very easy to forget details as time goes by. Third, and to me very important is the fact that you noticed improvement once you brought your dose up to 1 gram total per day. This suggests that you are an HDT responder and as such, Dr. Costantini, based on his clinical experience, feels that this means you have very significantly slowed or halted disease progression! Previous UPDRS testing scores compared to a future UPDRS test can help to confirm that you are responding well.

Lastly, previous "push test" responses compared to future push test responses can help to confirm that you are responding positively to HDT therapy and can also help to zero in on when your B-1 dose is optimal or near optimal.

Art