I saw this great tweet by Dr. Aaron Boster the other day and I couldn’t stop laughing.
Yes, this is what high-dose biotin can do. What’s even better is what it can do for MS, at least for mine.
My annual physical was coming up.
I had one instruction: Go off my high-dose biotin for a few days before blood work was done. Last year my thyroid test showed a false result.
Research has shown that high-dose biotin may provide a false positive result for the thyroid and it is suggested to go off the supplement for a few days to a week prior to the test.
Many of you know that Myetin, a high-dose biotin with NAD+, has been part of my regime for about a year and a half now. After taking it, I found that my energy increased and my pain and spasticity reduced. It also seems to help keep my cog-fog at bay. These are three things necessary for me to function at my best.
 |
| Not as much hair as Dr. Boster, but it’s getting there! |
But the fact was, I was scared to go off of my Myetin. Everything has been working really well these last couple of years with regards to managing my MS symptoms. I did not want to change a thing!
What if I relapse?
I was freaking out. And I was traveling across country for a bunch of MS advocacy work. I could not afford a relapse. I couldn’t even afford to not be on my best game possible. Due to some weird regulation I am not allowed to talk to my doctor outside of appointments and relaying messages via a nurse did not instill confidence in me.
So, stubbornly, I did not wash out the drug before my blood work.
Interestingly the results showed normal thyroid activity this time.
 |
| Enjoying life when I can. |
My interest was piqued.
I spoke with the folks at Avior Nutritionals (maker of Myetin) and was informed that taking the supplement does not guarantee a false thyroid test but it can happen.
Unfortunately my lack of conversations with my neurologist did not lead to confidence on my end. So, I went to a leading expert on MS, the much-loved Aaron Boster, MD from Ohio.
Dr. Boster is not familiar with Myetin, but as a practicing MS specialist is quite aware of the potential benefits of high-dose biotin.
Boster, who has worked with thousands of MS patients in Ohio, has over 16,000 subscribers to his YouTube channel, and is quite active on social media. His regular videos on MS are insightful and smart creating a great resource for those newly diagnosed and those living with MS for years.
High-dose biotin is showing promise
“The preliminary research is so compelling that I will routinely recommend high-dose biotin,” Dr. Boster said.
Benefits are showing potential in slowing disability in those with progressive MS, as well as slowing brain volume loss. It may also have “re-myelinating potential. “These are very important things to do,” said Boster. He further explained that high-dose biotin is a very safe compound to take and has not shown any risks to date.
“There have been some large, properly designed clinical trials designed to answer the questions of the benefit and risks. But the jury is still out,” explains Boster, “the research needs to be replicated.”
Clinical trial results pending
A multi-campus clinical trial involving 642 people with MS is looking at the efficacy of MD1003, a form of high-dose biotin, in disability of those with progressive MS, especially gait issues. This double-blind study includes 92 facilities and recently wrapped up data-collection. Results will take time to process but I’ll share them when available.
When I told Dr. Boster about my failure to comply, he expressed his concern. (Which is just what I needed!) He explained that thyroid tests use biotin in their assays, and by not washing out my system, I may not get honest results.
We talked about the emotions of changing routines, fear of relapses and then focused on ways to gain confidence. The partnership between patients and doctor is vital in this confidence. I am grateful to Dr. Boster to be able to have this conversation.
“I don't recommend high-dose biotin for everyone,” said Boster, “but if a patient is interested in preserving the brain reserve, managing brain-volume and slowing progression then it’s a conversation to be had.”
 |
| Not always easy, but I keep at it. |
Doctor Patient Partnership
This experience reminds me of the importance of a good working relationship between doctor and patient, a true partnership. I obviously did not have one and have since found a new doctor. I have not seen him yet but the MRI is scheduled and so is the neurology appointment. I’m psyched.
Thank you, Dr. Aaron Boster, for helping me better understand the potential for high-dose biotin. And the importance of having confidence in managing my MS with my neurologist.
