symptoms

Multivitamins & Biotin for Biotinidase Deficiency

Would a Multivitamin Give You Enough Biotin?

Biotinidase Deficiency is the cause of my profound vitamin B7 deficiency. I have been asked if taking a multivitamin would have kept the deficiency from happening and the answer is no. Most multivitamins do not even contain 100% of the daily recommended amount of biotin in it. The daily recommended amount to supplement with is 300 mcg and from what I have read patients with Biotinidase Deficiency are usually treated with 20 to 30 MG of biotin, some up to 100 MG1. That means I need a mega dose. From what I read the recommended daily amount is based on a healthy adult that can absorb vitamin B7 from nuts, eggs, produce and other foods they eat.  Biotinidase Deficiency patients do not absorb biotin from most foods so they need a larger dose. Patients must supplement with a free form biotin. Biotin has to be free from the protein that it is normally bound to in foods. New vitamins, like the “whole food” type may not have free form biotin and it is very important for patients with Biotinidase Deficiency to have the free form biotin since we do not have the “active” Biotinidase enzyme that breaks the biotin from the protein so it can be absorbed.

photo of a bottle of Biotin liquid capsules by Nature Made

Biotin liquid capsules by Nature Made

 

Biotin Supplements

I have found some issues with biotin supplements like above; it must be a free form for patients with Biotinidase Deficiency. I tried to start using a tablet form and found even when I was taking twice as much as the Nature Made liquid capsules it was not helping me at all. My body started to get stiff by the end of the day and after a few days the skin on my finger tips was getting really dry and cracked, so I switched back to the liquid capsules and I am doing well again. I have also tried to find a medical grade biotin but the pharmacists have just had a good chuckle, they do not see why anyone would need it. There are professional grades they would offer, but what does professional grade even mean? Currently I am sticking with Nature Made Biotin because I know it has been working for me. It is available sometimes on sale on Amazon or at Target. I have already had issues with Target being able to keep it in stock.

I have found FDA warnings to one lab2 in May 2013 for their biotin supplement only being 4-6% biotin and the rest of the product ingredients not being listed on the label. I have not found any list of the companies that lab sold the product to or what brand names it is currently being sold under. While searching about biotin I also found it being sold in bulk from China and they do sell feed grade biotin which is usually 4-5% biotin. Maybe that lab forgot to make sure they were getting medical grade biotin and not the feed grade3?

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Profound Adult Biotinidase Deficiency

Profound Biotinidase Deficiency

Biotin Disease Test

Blood test shows profound Vitamin B-7 Deficiency

I just found out I have a profound vitamin B-7 deficiency on Friday, July 19th which was Lloyd’s 60th birthday and it has been an AMAZING week filled with so many changes! Changes even include me jumping and dancing around the house, luckily the dogs do not seem to mind. Vitamin B-7 is also known as Vitamin H1, Coenzyme R or Biotin and the deficiency is a disease called Biotinidase Deficiency. This is crazy, I feel amazing and I am still in shock. Oh my god, this is crazy. I love my great nephew; he is the best great nephew EVER! Thank you God, thank you Shellie, thank you Tasha, THANK YOU Landon! This is a rare disease with only 1 in 120 people who have the mutant gene and 1 in 60,000 overall have the deficiency; 1 in 130,000 for profound deficiency and 1 in 110,00 for partial deficiency2. I have not found stats for adults, but adults3 are currently only being found when newborns are found to have the gene.

 

Great Nephew

This is my Great Nephew who was tested for the mutant gene that causes Biotinidase Deficiency

Symptoms Improve After Biotin

Changes in how I felt started the first day after taking Biotin; like not needing sunglasses while outside. I did not even realize I did not have them on and only discovered it while reviewing the photos Lloyd took during a KickStarter event for Dry River Brewing. I was even able to join in and follow along with discussions during the event. Each day I felt less stiffness in my joints and muscles, I never even knew how much stiffness was across my forehead and the back of my head. Three days after starting Biotin I found I can bend over and lay my fingers and part of my palm on the floor, I now have so much less muscle stiffness it feels really unbelievable. Four days after being on Biotin I noticed I had moisture in my mouth; I have been using mints for years. Each day I have noticed improvements like warmth in shoulders, hands and feet, no pins and needles, no numbness, no balance issues, no more running into things, no pain in my shoulders, back or spine.  Currently very little pain or stiffness in joints, neck and back, when I start to feel it I take a Biotin and it goes away.

 

Biotinidase, Rheumatoid Arthritis or Both?

That is the question, right now I am unsure. On Saturday July 20th, I stopped Mobic and Arava. Today I am due for my next shot of Cimzia and will be skipping that as well. I am even off allergy pills I was taking to reduce red itchy patches! Last month I had to do my shot late because of slight chest congestion and during that time my shoulders and spine increased in stiffness and pain. I mentioned it to my new Rheumatologist during my visit with him and he told me Cimzia would not help my spine but it was and so was Mobic. I have ran into medical publications mentioning T Cells4  and TNF-alpha 5 but I do not know what either mean other then I have seen them mentioned in medical documents related to Rheumatoid Arthritis as well. Continue reading

Thyroid Issues, Rheumatoid Arthritis & Symptoms

graphic for medical tests, bandage, shot, xrays, pills

Shots, pills, imaging tests, blood tests and more doctors.

Thyroid Issues

Today was my first appointment with the Endocrinologist (gland doctor). I talked to two doctors, one inspected my throat area and they looked at recent blood tests and previous ultrasound of my thyroid. They discussed the nodule as being vascular which has blood vessels in it and a biopsy could lead to bleeding. We discussed symptoms I have been having from feeling like my body is on fire to feeling extremely cold, weight loss at 10 lbs a week during “flares”. To trouble swallowing, choking when I drink or eat at times during flares. Trouble breathing  usually during the evening hours.

They decided to start by ordering better imaging and seeing what the thyroid is doing from what I understood. They also ordered more blood tests which I did before we left. As we were pulling out of the parking lot I received a call from their office. The imaging appointment had been setup, it is a two day test and I must not eat any seafood for 7 days prior to the test.

Day one I will go in at 9:30 a.m. and take a pill around 10 then wait 4 hours and go in for the images. Then I will head home for the night probably around 4 p.m.. The next morning I go in at 9:30 for images again. Sounds fun right? I do this in about a week, then go back for results around mid August.

Symptoms of Rheumatoid Arthritis and/or Other Diseases and/or Side Effect of Drugs?

It seems pretty common to see other RA patients that have a long list of diseases and medications listed in their forum signature. Sometimes the symtoms of the multiple diseases commingle, making it hard to know what is causing the issues. Sometimes while talking to other RA patients we discover we have some of the same symptoms that we have not discussed or mentioned to anyone. That happened to me this past week on Twitter while discussing in direct messages some symptoms with another patient who is currently having thyroid test done as well. The symptom we discussed was the feeling of our tongues stiffening at times. We did not go into more details but I will explain how it happens with me.

At times I have felt like my body was on fire and during those times I usually lose weight quickly. But also during those times sometimes I get so cold that my body will not stop shaking (hard shivering) and it just seems to get worse until it feels like the back of my tongue is stiffening up or getting hard. I have found if I get myself under blankets I slowly start warming up and the coldness stops. Both being overheated and severely cold are very scary. These symptoms are usually happening during a hard flare, for me the last time was during a hard shoulder flare in January when I had trouble with the weight of my head causing increase pain (see Bad Week, Hard Lessons). But the feeling of being extremely cold happens less for me than the feeling of my body being on fire.

Symptom List

So here I will try to list the symptoms I have or have had since December of 2003. How many of these symptoms have you had? Continue reading

Rheumatoid Arthritis Symptoms

What are the symptoms of Rheumatoid Arthritis?
There are many symptoms of Rheumatoid Arthritis (RA) including swollen joints, joint pain, fatigue and weight loss which are just a few. Many websites provide lists of RA symptoms, but what do these symptoms mean? Do you have them all? Do you just have a few symptoms? Do they happen all at the same time? Do some happen overtime? I want to come up with a complete list of symptoms of Rheumatoid Arthritis. If you are a patient that suffers from RA, what would you list as a symptom? Can we go into detail on each symptom? I think we can, but my first task is trying to list out the symptoms. I would love to do a post discussing each symptom and what they mean to a person living with Rheumatoid Arthritis.

The search for RA symptoms
I started by doing a search on Google for “Rheumatoid Arthritis Symptoms“. I want to find websites I trust, so I pick out a few that are medical centers or resources that I recognize like Mayo Clinic, WebMD, University of Maryland and the National Library of Medicine. Let’s see what they include as symptoms of Rheumatoid Arthritis.

Mayo Clinic

Mayo Clinic provides the following list of symptoms for RA:

Joint pain
Joint swelling
Joints that are tender to the touch
Red and puffy hands
Firm bumps of tissue under the skin on your arms (rheumatoid nodules)
Fatigue
Morning stiffness that may last for hours
Fever
Weight loss

The website does go on to describe other symptoms like difficulty sleeping and weakness. They also have more in-depth details on dry eyes, inflammation of the eye, Glaucoma, Cataracts, painful breathing (pleurisy), shortness of breath, lung nodules, and scarring of the lungs. Continue reading

Faces of Juicing Book

Biotinidase Deficiency Not RA

Diagnosed with Rheumatoid Arthritis in Dec 2003 because of joint pain and fatigue. Found out on July 19, 2013 that I really was profoundly low on Vitamin B7 because of a rare disease called Biotinidase Deficiency. When I found out I was very weak, hardly could get out of bed, could not turn my head without getting light headed, dragging my feet when I tried to walk, struggled to breath daily for years and was having many many other issues. From the first 24 hours of taking Biotin my symptoms started to disappear and my body started getting stronger again.

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