I would like to know from our members who are now on HDT if you consulted your neurologist before starting. I asked my neuro at my last visit in August about HDT and he was unaware of it. I'm wondering if I should now ask for his permission, just inform him or simply go ahead and tell him when I see him next August.
Starting High Dose Thiamine : I would like... - Cure Parkinson's
Starting High Dose Thiamine
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Joanne_Joyce
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I consulted (by) Doctor Costantini. He prescribed thiamine hcl
nellie58• in reply to
Same with my husband
AmyLindy• in reply to
Me too
Have your neuro read the entire findings of Dr. Costantini from Italy. If he balks, then you're best to find another neuro. HDT works, thanks to Dr. COSTANTINI.
Thank you for that encouragement,
Joanne_Joyce,
To be clear, just like any other drug or supplement, HDT/B-1 does not work for everyone, nor does it work the same for everyone, but it does work for the majority as witnessed on this forum and in Italy.
Based on reports by forum members, it seems that in general, neurologists are either not familiar with HDT or they are not interested in hearing about it, but more specifically, some members have reported that their neurologist were very open to the idea, considering the safety profile of HDT and were willing to monitor their use of B-1. All you can do is ask your neurologist or MDS and see what they say.
Good luck with your testing of HDT!
Art
When I try to speak about HDT to my neuro, she suddenly becomes deaf. A very common affliction among neuros.
I told my neurologist I was considering HDT. She gave me her blessing. I never asked. My movement disorders specialist discharged me because I had improved so much. He felt he couldn’t do better than the b1 Thiamine hcl.
So why haven’t you started yet? Put it off no longer. Do it for you.
What dosage worked for you?
I started at 1,000mg twice a day. That worked for awhile. I chose to increase after about a year. I was having balance issues. I now take 2,000mg every morning and 1,500mg every afternoon. I want to be clear that I have parkinsonism and not actual Parkinson’s Disease. The b1 stopped or reduced almost all my symptoms. The one I still have is fatigue. I also had total knee replacement surgery in October and one in January. I’m still in recovery mode from that. I started the b1 Thiamine hcl in November 2018. It’s been a blessing and given me hope.
I’m concerned that we might feel we have to seek 'permission'. We know more about HDT than most of our neurologists. It is our body... I did inform mine I was trying it! But then my husband always tells me I’m a difficult patient!
My husband has been on the B1 protocol for 2 years. We already started, but asked his neurologist for his opinion at a regular appointment, and while he had heard of it and was skeptical, he said for us to go ahead and try if we wanted. He seemed unfazed by the high amount. My husband is very fit, healthy and active otherwise, so there were no other health issues we were concerned about. We are convinced it has helped.
My family doctor, who is also a friend of mine when I introduced him to HDT, read it and said "if this protocol does half of what it says I was in your shoes with PD, I would prove it right away since it's pretty safe" , he prescribed me b1. After 5 years it's still going very well. My neurologist after was the great Dr. C and now he is Dr. Fancellu from San Martino Hospital in Genoa that I see one time at year,
I started b1 on my own then watched my neuro's eyes widen with surprise as I walked into my appointment without the two canes I used to need. I don't fall anymore and even taught the neuro a balance game that I play with my husband. She said "keep on doing what you're doing, you look fantastic"
I began with 500mg and increased by 500mg every 7 - 10 days until I landed at 3.5 grams daily ( split into two doses). I also take magnesium with each dose as that completely prevents the terrible leg cramps I used to suffer. After about a year I dialed back to 2 grams and seem to function well at that dosage.
How exactly this high dose helped you? What side effects? Sorry, I saw your explanation above.
What‘s your Magnesium dosage? Thanks.
I asked my neuro about HDT and she dismissed it. My regular doctor supported it. In the end I emailed Dr C and he advised me. I tell my neuro I am taking it but she is focused on meds. I don’t think you need permission but you would want to let your neuro know if you take it.
My movement order spec didn't know about it. I informed him and he suggested to take 1 pill (which happens to be 300mg) and see what happens. I do get a burning sensation for about an hour or so and then dissipates. It hasn't in anyway affected my tremor. Since I started several days ago so I'll wait and see.
b1 Thiamine hcl doesn’t always help tremors. It does for some PwP. Are you taking the Thiamine hcl? I’ve not heard of a brand that comes in a 300mg pill. If you aren’t taking the correct version it won’t help you. Please check your product label carefully. You don’t want the mononitrate Thiamine. It has to say Thiamine hcl or hci.
hcl and hci are the same thing. It depends on the manufacture as which they prefer to use. I started with 2 grams (2,000mg) daily. It is completely safe to use higher doses. If 300mg isn’t helping, it’s time to increase. It is taken twice a day at breakfast and again at lunch with or without food. If it’s bothering your stomach try the opposite of what you are doing now as far as food.
I don't think you need to ask permission to take a supplement, but then I take lots of supplements where I have found research that they help with Parkinson's. I started taking 1500mg/day and now take 2000. It really helps with my tremors. This is what I take and the best price I have found:
vitacost.com/vitacost-vitam...
This is a water soluble supplement, which is what you want as your body will wash out any excess. Don't get fat soluble B1, as it will build up in they body. When you go to the website they will offer you a 20% off coupon and sometimes they have buy one get one free sales.
I have 4 triggers that cause my tremors to get worse - being very cold, very stressed, physically exhausted and caffeine. I still get triggers in these situations, but otherwise my tremors are mostly gone.
I know others take B1 injections but I have not explored that because the pills work for me.
I hope this helps you. Good luck!
My dad started on a low dose of 1000mg because he is quite slim, and his movements have improved. I am a doctor but I did not check his neurologist..we also cut the afternoon Sinemet and he seems to be moving better. We are missing the Magnesium he used to take tho because some Magnesium is in the vit B1. I may re add it because he is a bit constipated at times..The afternoon Sinemet used to cause so much confusion..He can get in and out of bed now unaided after just a few days.
By all means, inform your neuro that you’re interested in the HDT therapy and politely ask their opinion. Consider what they say, with an open mind, then do as you think best. Physicians are consultants that work for us.
We did it on our own. Since George's symptoms are mild, I studied everyone's experiences on this site and the FB thiamine posts. We started out with with 2 grams. Very shortly, his tremor went away, but then, it got worse. We then redced the amount by half, every week. He now takes 2 mg in the morning, and 1 mg in the afternoon. I kept meticulous records of his symptoms. I'm not sure this is the right dose. We will continue to alter it as needed.
bepo,
You said you kept meticulous records, if so, you said his tremor went away which indicates he is a responder to HDT and that is great news. From the time the tremor went away to how soon his tremor worsened, what is that time span from your notes? If it worsened within a day after improving, the dose is significantly too high.
Once he stopped taking B-1, how long did it take for his tremor to improve from its worsened state back to his normal tremor?
Those two answers give a clue to how close he was to his correct dose. If his tremor started to improve within a day of stopping B-1, he was close to an optimal dose based on what Dr. Costantini told us. That would mean his dose was only slightly high. If it took about 3 days for the worsened tremor to improve, he was quite a bit too high on his dosing. If it took more than 3 days, he was way high on his dosing.
If he is getting any benefit from taking 3 mg/day total of thiamine he has set the record for lowest effective dose on this forum. The lowest effective dose reported on this forum so far was 25 mg / day total for normal oral dosing.
Art
Thanks, Art.
The day ater his tremor went away, completely, it came back much worse. I guess, when I look back at it, I didn't do such a good job with stopping the B1. We may have to start over. His tremor went away completely for a couple of hours when he was taking 350 mg and 400 mg, but then it returned. I think maybe we should start over. I was watching non motor symptoms and his lip tremor. I thought the hand tremor was the last symptom to resolve, so we were just waiting. Any suggestions would greatly be appreciated.
Your first sentence shows the dose was too high by a significant amount to go from no tremor to worsening in just a day. So 750 mg/day is too much. Dr. Costantini would have cut that dose in half, but had you wait at least 5 days before restarting at probably 400 mg/day. Once restarted and taking good notes, he would ask you to update him to let him know how it is going.
Art
Thanks, Art.
I thought because of his immediate reaction to the HDT, that he would be responsive to lowering the dose. In the later days, I did stop for several days before restarting at lower amounts. His tremor was worse when he was taking 400 mg a day. Do you have any suggestions about where we should re-start. I'm open to anything.
Was his tremor instantly worse upon starting at 400 mg or did it take time to worsen and if it did, how much time did it take to worsen?
When on 2/24/20 550, 250 am, 300 pm He was completely out of it.. Not making sense. He also had a lip tremor. Then we went to 400 total. 3/13/20 400 worse tremor from a 3-4. After 12 days, it got worse. He did a pill stop. for 2 days. His tremor was pretty bad. Then we went to 350 mg. Then the pandemic started and I no longer was taking notes..
How long was the B-1 break from stopping 750, to starting at 400/day?
2/14 700 tremor at 3 in am poor executive function. No tremor for about 20 min in morning. No constipation. Forgot dinner mucuna.
Saturday 2/15 700 tremor 2-3
sunday 2/16 650 heavy tremor 3 spilled coffee with tremor. Lip tremor, followed movie, not confused, tired.
Monday 2/17 650 lip tremor am, constant 2-3 tremor. forgot dinner mucuna
tuesday 2/18 650 tremor went away completely, and then was a 4 back to back several times. Seemed sharper
wednesday 2/19 600 tremor 1-2 early afternoon
thurs2/20 600 lip tremor
friday 2/21 600 forgot he didn't go to the butcher to get meat& was looking for the meat.. 2-3 forgot mucuna
satur 20/22 600 lip tremor 2-3
sunday 2/23 550 2-3
monday 2/24 550, 250 am, 300 pm completely out of it. Not making sense. Forgot mucuna, lip tremor.
Sat 2/29
stop
sun 3/1
stop
mon 3/2
stop
tues 3/3 400 symptoms did not get worse. Lip tremor
wed 400 1-2
tremro
thurs 3/5 400 lip tremor 2 sometimes 3\
friday 3/6 400
saturday 3/7 400
sunday 3/8 400
monday 3/9 400
tuesday 3/10 400
wednesday3/11 400
I guess my notes weren't so great 
. I don't know why I went down to 300 mg.
Your notes don't give much in the way of clues as to how he was doing on 400 mg/day after the break.
I know.
Maybe we start with a higher amount, like 600 and then see how it goes. Then stop for 5 days. He has been on 300 for a month, I want to say. I thought the tremor took the longest to resolve. So, when the lip tremor and some of the mental issues were better, I thought we were on the right track. I did not do such a good job in stopping for 5 days. I will have to do that. Thanks for all your help, Art.
Betsy
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