As of January / February, 2019 , Dr. Costantini had a stroke related to a scheduled surgery and is currently recuperating and is unavailable for email consults until further notice from his HDT team. Until he returns, we are counting on the experience of the HU Forum members who have or are currently testing HDT to answer any questions not already answered by this page or the HDT FAQ page. For the most recent updates on Dr. Costantini's recovery, Dr. Marco Colangeli has a post going that he has offered to update as information about Dr. Costantini comes available. Here is a link to that post and if you select to "Follow Post" , you will be notified by HU whenever that post is added to.
Since Dr. Costantini can not currently give dosing suggestions, I have started a page where I have asked members who are currently testing or using HDT to post about their dosing experience and here is a link to that page:
Although we already have a thiamine FAQs page, there are more questions that are somewhat related to the use of thiamine that are not answered by that reference page so I will attempt to answer some of the common questions here.
1. Who is Dr. Costantini?
A. He is a neurologist in Viterbo, Italy with his own practice and 3,500 + patients that he is treating with thiamine as an adjunctive treatment to their standard PD meds. He has been treating his patients with thiamine for over 5 years now during which time no apparent disease progression has been observed while symptom improvement has been significant for most patients. As far as thiamine, he has been working with it since 2010/2011. Dr. Costantini has over 15 studies related to thiamine on PubMed. He has tried contacting the MJF Foundation in order to see if he could get them to do or fund further research into thiamine to help determine exactly how it works, but they did not respond. In order to get thiamine to a point where it can be considered a mainstream option in PD is one of his main goals.
Based on reports from forum members who have gone to his office, he is nothing short of dedicated to his patients and this thiamine protocol! Based on his willingness to treat PWPs via email for free, he is clearly showing how dedicated he is to his patients and this protocol! From the time I first contacted him about three years ago after reading several of his studies on PubMed, he has been nothing but helpful in offering to treat my friends with PD via email. I think we are lucky to have found him and I feel that he represents the very best of what any of us could ever hope to find in a doctor! He works with at least two other doctors in his practice that I know of, Dr. Trevi and Dr. Colangeli, and like him, they seem very dedicated to the patients and the cause of spreading the word about thiamine.
2. What does the thiamine protocol consist of?
A. In Italy, Dr. Costantini mainly uses high dose (100 mg) intramuscular injections twice a week, but he has a few patients who are not comfortable with the twice weekly injections and for them he uses high oral dosing (1~6 grams) in pill form. Here in the states you can use the IM injections which require a prescription or you can use tablets or capsules which are available over the counter. You can also use pure thiamine powder, but this needs to be added to something sweet to make it palatable as the powder is bitter. Sports drinks, smoothies and yogurt are some common mixers. Do not mix with citrus juices, pineapple juice or take oral dosing with these juices. The upside is that the powder has none of the fillers found in the tablets or capsules. The capsules are easier to swallow than the tablets and this may be very important for some PWPs with swallowing issues, but both come in 500 mgs. Generally, the oral dosing must be done two times everyday. Once before breakfast and once before lunch. Generally evening dosing may cause poor sleep issues while the breakfast and lunch dosing has shown the potential for improved sleep! Thiamine is compatible with most PD meds, but letting Dr. Costantini know what you are taking before you start thiamine is advisable so he can make sure there are no conflicts. You will still need to continue your regular meds as thiamine is not a cure for PD, it helps alleviate many motor and non motor symptoms and so far seems to halt or considerably slow disease progression while having a very good safety profile.
Here is a link to an article discussing the Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects and was provided by forum member GioCas :
Pharmacokinetics of high-dose oral thiamine hydrochloride in healthy subjects:
3. How long does it take to fine tune the thiamine dose for optimum benefit?
A. Results on this aspect of thiamine therapy vary considerably from patient to patient with 6 months being about the longest and from the start, being the shortest. Usually Dr. Costantini will look at what the patient is currently taking, their height and weight as well as their symptom severity and length of time with the disease in determining a starting dose and see how you do over the first three weeks to three months. If symptoms show improvement in the first week or two but then a worsening of symptoms in the 2 to 4 week range, this indicates that the dose may now be too high at which point the doctor may adjust the dose or suspend thiamine use for several days to a week and then restart at a lower dose. One thing that is becoming more apparent with time is that the PWPs who have stayed in close contact with Dr. Costantini during this initial period of trying to determine the optimum dose seem to do better and get quicker results than those who try and go it on their own with no guidance from Dr. Costantini! Please keep this in mind as it is a very, very important point!
4. Are there known side effects with thiamine?
A. On this forum there have been some side effects reported such as a rash in three people, one of whom was too severe to continue taking B-1, very increased blood pressure in one person who was able to adjust the dose downward and continue HDT, dry mouth in one person, diarrhea in one person on oral dosing, but intramuscular injections do not seem to cause this issue, gastrointestinal discomfort in one person, two people who thought they might have muscle tension, back pain or leg stiffness, but Dr. Costantini said he has only seen these last three effects if the dose is slightly too high for the patient and Dr. Costantini reports one patient who threw up when she took her IM injection. If anyone has had a problem with thiamine, please post it so we can keep this side effect list updated!
Here is a link to a page which Dr. Costantini has written that specifically discusses overdose of HDT in PWPs :
5. What benefit does the thiamine protocol offer to PWPs?
A. Thiamine seems to offer a very broad range of symptom improvements once you have found the optimal dose, but finding that optimal dose may take time as outlined above. For more information on this aspect, I will include a link to a post that is about what the forum members have found in terms of benefits from taking thiamine to give a better idea of reasonable expectations.
6a. How do I contact Dr. Costantini in Italy?
A. You can email him direct at : firstname.lastname@example.org
Dr. Costantini speaks Italian and it will be most expeditious for you to use this translator (recommended by forum member Xenos and many thanks to Xenos!),
as it seems to be slightly more accurate than Google Translate. It is also advisable to include the English version of what you type in case the translator is not accurate enough as Dr. Costantini has two other doctors at his office, Dr Trevi and Dr. Colangeli, who are fluent in English and will be able to translate any errors that he can not understand. By using the translator above though, it will for the most part, allow Dr. Costantini to understand your email without having to pull his associates from what they are doing and will help to expedite the process. I will include a link below to a post that gives more detail about what information you will need to send to the doctor via email.
6b. How do I use the translator?
A. When you open the Deep L link, type your message in the box on the left. Above the box on the right is the following symbol : " V "
Left click on that symbol and select Italian from the drop down menu. Now whatever you type in the box on the left will show up in the box on the right in Italian. When you have completed typing your message, move your cursor over to the box on the right and highlight the print in this box by moving your cursor to an area in the printed area that is blank and then right click your mouse. A drop down menu will appear and choose "Select all" by left clicking your mouse. This will highlight all of the print in this box on the right. Now right click your mouse again while the cursor is still in the right box and select "Copy" from the drop down menu with a left mouse click. This captures the Italian translation.
Now in another window that has the email you are sending to Dr. Costantini, drop the captured message into the email by starting the email message as you normally would by placing your cursor at the beginning of the email and left clicking it. You will see the typing cursor appear and start blinking. With your mouse cursor near the blinking cursor, right click your mouse and select, "Paste" from the drop down menu. This drops the Italian translation into your email. Sign your name as you normally do.
Now go back and copy the information that you typed in the left box and copy it as you did the right box. You have now captured the English version. Go back to your email and "drop" this English version into the email area below where you typed your name at the end of the Italian translation. Send your email.
If this is too hard to follow, just type a normal message in English and send it to Dr. Costantini and he will have to translate it himself. The purpose of you doing the translation is just to save him time.
7. If I have a problem or question while taking thiamine, what do I do?
A. In such a case, Dr. Costantini advises that you contact him via email and he will answer as soon as possible. Please keep in mind that he is a busy doctor with his regular office patients and he meets with other neurologists in Italy to advise them about thiamine in PD as well as the remote patients that he has from around the world, so he will not always be able to get back to you right away, but he does his best to get back to you. If you ever have a problem where he does not answer your inquiry, send your email again as he has said that all questions regarding thiamine are important and he will try and answer all. He has said that no question is too small to ask him regarding his thiamine protocol.
8. What does the doctor charge for these email consults?
A. Although he charges his regular office patients for their visits, members on this forum who have gone to see him at his office in Italy have said that he is more than competitive, price wise for their office visits. To date he has not charged any forum members for these remote email consults ! He is very dedicated to seeing that word of his thiamine protocol is shared as much as possible! According to several forum members who have gone to his office, he is very thorough and very enthusiastic with them about his protocol as well as very caring. At each visit he does an UPDRS test, a push test with video, a walking test with video, a talking test with video and possibly a writing test with video. These videos are kept on file to be used for comparison at each visit as a fairly accurate means of documenting improvements over time as it is actually fairly easy for some people to not realize how much they have improved over time. I didn't understand this phenomenon, but the videos make it clear that it is easy to forget how bad you were and based on his experience with previous patients, he now requires it because many of his patients who improved, thought they hadn't until he showed them the videos of how they used to be! I personally have seen this effect firsthand so I fully understand the value of the videos in keeping it real.
While Dr. Costantini does not charge for his email consults, he has said he would appreciate it if once you have realized the benefit of thiamine in your particular case that you let your doctor / neurologist / movement disorder specialist know that the thiamine protocol is working for you in order to help spread the word about thiamine and Dr. Costantini's efforts.
9. How long will I have to take thiamine?
I think it is easiest to just look at thiamine as one of your regular meds that you will be taking for the rest of your life because that is what you will be doing. Once you have established your correct dose and are able to perform a good push test and are otherwise stable, it will be possible to take vacations from B-1 for limited periods of time.
10. Are there many people on this forum who are taking thiamine?
As of today (08/11/2018), there are over 50 people on this forum who are currently using or testing thiamine and there are some who have only passingly mentioned that they are taking it, but have not yet posted their results or at least given some type of update, so I do not include them in that count.
It would be greatly appreciated and useful for future users if you start using Dr. Costantini's Thiamine Protocol if you will add your results, either good or bad, to the "Who Is Taking Thiamine" page linked to below.
11. Will Dr. Costantini sell me what I need to do his protocol?
A. No, Dr. Costantini does not sell the thiamine, but it can be purchased at many places on line at reasonable cost as outlined below.
12. While on the B-1 protocol will the disease continue to progress even though my symptoms are well controlled?
A. Dr. Costantini has been treating patients with thiamine for just over 5 1/2 years and in that time his thiamine patients have not shown disease progression regardless of their condition when they started on thiamine! He has patients who have suspended thiamine treatment after 5 years of use and the symptoms gradually return over a period of months, but never to a point that is worse than where they started and as soon as they resume their effective dose, the symptoms go away again! As of now, he only has one patient who has a 5 year old DatScan and a recent DatScan and this patient shows no progression on the second DatScan. As time goes by, he will accrue more patients with long term Datscans, but as of now just the one patient.
If you do contact Dr. Costantini, please let him know you are from the Health Unlocked forum to help him keep track of our members!
Here are some links that will answer many other questions that you may have regarding Dr. Costantini's Thiamine Protocol. This first link is to a page of frequently asked questions (FAQs). This page will answer almost all questions you may have about the use of thiamine / vitamin B-1 and it is important that you read it all for two reasons. One, by reading these questions and answers, it will eliminate you having to ask the same questions over and over again which will allow him more time to answer case specific questions in a more timely manner. Two, it will give you more knowledge about reasonable expectations of this protocol and will help to eliminate frustrations during the initial testing period when you and the doctor are trying to determine your most effective dose. This can be a very trying period as you see your symptoms going up and down from day to day and for some, the frustration can be overwhelming, so this FAQ page is a must read as proper preparation before contacting Dr. Costantini.
The following link takes you to an easy to fill out form to be used for your initial contact with Dr. Costantini and will insure that you give him enough information so that he can reply with an adequate response and in a timely manner :
The following link takes you to a page of forum members who are discussing their results with the B-1 protocol in both intramuscular injection and oral dosing :
The following link takes you to an almost complete listing of 80 symptom relief and benefits that forum members have actually gotten from using the B-1 protocol :
This link takes you to Dr. Costantini's website:
The following link takes you to a youtube video that discusses HDT with Dr. Colangeli speaking in english about Dr. Costantini's HDT protocol and a little history on their work as well as other diseases that they have used HDT for :
The following link takes you to Dr. Costanini's YouTube channel where he has many videos showing patients and their reponse to the HDT/ B-1 protocol:
The following link will take you to a website where you can load your self videos that you want to send to Dr. Costantini so he can review how you are doing before and after HDT :
If you would like to donate to the Go Fund Me page for the advancement of high dose thiamine and research this link will take you to that page :
This next link gives a bit more information about Dr. Costantini :
This next link is about potential synergy between Levodopa /Sinemet / Rytary and Thiamine:
Here are a few links for where to get oral thiamine and what it costs. The product that is used is thiamine hydrochloride. Some manufacturers describe it as Thiamine HCI or Thiamine HCL, but they are the same thing and you will be looking for the 500 mg size :
This next link is for 500 mg capsules that are considered easier to swallow than the tablets in the link above:
This next link is to a 500 mg Thiamine HCI 120 capsule bottle designed and sold by forum member Erniediaz, on Ebay that uses vegetarian capsules which will be useful for any vegetarians or vegans who do not want to use the gelatin capsules. The other advantage to this particular product is that there are no fillers which could be an important consideration considering that if you are using HDT, you will be using it for life along with whatever else comes in the capsule with it! Also Dr. Costantini suggests using a "filler free" capsule if you are going to try and find out if the fillers are what is causing a rash from HDT use. So this would be a potential option for that purpose.
Here is another link for 500 mg capsules that is more expensive than Vitacost, but may be useful when Vitacost is out of stock :
Another link to a more expensive supplier that may also be useful as a backup supplier:
One more option for 500 mg Thiamine HCL capsules :
If you are in Canada, this supplier has 500 mg tablets. Thank you to member hercules957 for this supplier:
The following link / email is to an Italian pharmacy that will compound thiamine hcl capsules with no fillers / excipients and will ship worldwide :
This link is to a supplier of 100 mg thiamine capsules which may be needed to fine tune your dose in some cases:
These next three links are for bulk thiamine powder:
This link is the cheapest supplier I have found for bulk powder thiamine :
If you're down under:
If you're on the other side of the pond:
(To be added and if you have this information, please post it so I can add it to the original post!) )