I first noticed symptoms of what I believe to be functional dysautonomia that affects my peripheral circulation in the winter when I was 12 years old. Though they have never completely derailed my life, like the symptoms of so many others, they are a constant presence. I am now 21 and the symptoms have more or less stayed the same since that winter.
These symptoms mainly impact the peripheral circulation on my hands, feet, and face. They are triggered, or worsen, when exposed to heat, cold, stress, or alcohol. Most of the time my hands and feet will have a slightly cyanotic tinge, are cold, and (feet especially) will sweat. When it is very cold they will turn to a bluish color. While standing still or when my hands are by my side they will get blood pooling in a bluish / purplish mottling color. In addition, my capillary refill time is very slow, especially on my feet, sometimes in excess of 12 seconds.
When it is warm my hands and feet will become red and hot, with blood pooling in them when placed below the heart, if I raise them they will return to a normal color. Also, when hot I will get prickly / itchy sensations on the back of my arms and on my back. My cheeks, in addition, are often quite red, even in a cool room, and get more so when I am hot or stressed. My brother also has these similar circulation issues.
Apart from these physical symptoms I noticed, I have dealt with fairly bad anxiety since I was young, especially around school and sports. It has gotten much better in the last year or so after I noticed it and worked through it. Through recognizing it, I realized how much of the time I was in a tense sympathetic state. Another random symptom I have had since I was young is eye floaters. I am not sure if the two are related. Other than those symptoms, I feel as though I am healthy. I am able to stay active and am studying in college.
It’s More Than Raynaud’s Syndrome
Every time I attempt to get these symptoms checked doctors say they can find nothing wrong with me and that it is either Raynaud’s or “just how it is”. Though, from my own research, it appears to me that is not the case. The only other examples of symptoms I can find like mine are pictures of POTS patients with dependent acrocyanosis / blood pooling in their arms and legs and a case study of Dr. Lonsdale’s of a girl with juvenile arthritis. I find my own symptoms confusing mainly due to the lack of other symptoms.
Perhaps Thiamine Will Help
After taking time reading through this site and looking through Dr. Lonsdale’s work, I started taking 50mg of Allithiamine and 125mg of magnesium daily, about a month ago. During this first week of taking it I noticed a twitching in my stomach, general stomach pain, and I would sneeze a ton. After a week, I bumped it up to 100mg of Allithiamine and 250mg of magnesium, during this period I noticed very intense dreaming, which was constant throughout the night, and an upset stomach. After a few days of this, I dropped magnesium down to 125mg and kept thiamine at 150mg. I am now at 200 mg of Allithiamine and 125mg of magnesium a day. It has been four weeks since starting Allithiamine and I have not experienced further strange symptoms, however, I have not noticed any of my main symptoms, the issues with peripheral circulation, reduce.
I am just curious if I am on the right path and if anyone would be willing to offer some guidance.
Thankful for This Community
I am so appreciative of this community. I cannot describe how grateful I am to have this paradigm for thinking about health at such an early age.
Thank you to everyone who took the time to read this, Dr. Lonsdale for all of his work, and Dr. Marrs for her work and encouraging me to post this.
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Hi, coming on here. You’re not alone. I’ve noticed when dehydrated the systems get much worse or being on my feet too much.
Hello!
I know this was post was made two years ago, but still wanted to comment incase you haven’t been able to find any answers or guidance.
There’s a couple of things I think it could possibly be, and these two things go hand in hand with one another, people who have one of these syndromes usually have the other and also a few more, however I can’t think of the ” few more”
So, upon the grace of God I recently had to have a CT scan done, and during that CT scan, they randomly found something called “Nutcracker Syndrome” its where where vein is compressing my left kidney.
Im curious to know if you ever get any flank pain, rib pain or left leg pain?
Anyways, due to its compression it creates bad circulation which then turns into the pics you have provided. Because it is a vein compressing disorder it goes in hand with something else, that I’m waiting to be tested for, as my legs slightly swell, turn red or purple and feel all weird sometimes hot, which is May Tburner Sydrome, it’s also a vein compressing disorder and it seems to affect my limbs more.
This stuff is pretty rare and that’s why by the grace of God whomever was looking at my CT scan, knew what Nutcracker Syndrome was. Because it’s so rare many doctors are clueless too it and how to treat it. And many will probably look at you crazy for suggesting them to see if you have it or not, or even if you told them you have it. If you think you have it, there are some FB support groups, that can guide you in the direction to doctors who have experience and knowledge in all of this.
Regardless
I.hope you find your answers.
Hi, I have nutcracker syndrome , May thuner and pelvic congestion. My hands and feet look like this often. Sometimes I will have a freezing cold foot and a burning hot foot at the same time. I’ve been stented for MTS but still have the same problems 🙁
Hello-
Please look into Cold Autoimmune hemolytic anemia. I believe this is what you might have. You need to See a physician for bloodwork and treatment. However, in the interim folic acid supplementation along with vitamin B 12, can help. All the best to you
I have the same circulatory issues and have always had them since I can recall (48 Yrs old now) certainly since late teens anyway. I also have always had irreugular bowel movements and sometimes POTS symptoms plus bad tinnitus for about 15+ years. I excercise regularly for the past 13 years (weights and walking) and have recently in the last year cut out sugar and lowered my carb intake completely cutting out all the refined carbs & beer, I drink strong coffee daily (two cups) and often a glass of red wine, my diet is full of quality meat and veggies. Yesterday I started taking 100mg TTFD, I have been taking a multivit daily for years and have also started taking around 400mg of Magnesium Bisglycinate daily and Molybdenum. Today I feel like crap (headache) low mood etc but I wouldn’t say that was unusual so not sure if connected. We shall see how it goes but I’m not optimistic tbh. One other thing of note is that since taking the TTFD I have had a sensory perception that is hard to describe but is perhaps similar to a metalic taste in my mouth or even a smell of garlic (I know TTFD was synthesised from garlic). Anyway it’s wearing off now 24 hours later but I am about to take my 2nd dose so let’s see if it returns.
I have the exact same problems that you described. My feet and lower legs are often cold and then they become warm and red suddenly. I also have those red areas on my feet. When I’m sitting at home or in class during winter, my hands and feet barely get warm. And then I get stressed (anxiety? IDK) suddenly and my hands and feet become very red, warm, and sweaty. And then there’s a rush of warmth throughout my body with itching and a weird feeling on my arms. It all started in September of 2015 circa (I was 16 years old then). I don’t know what to do anymore. I take a Vitamin B complex with thiamin etc, Vitamin D 2000IU daily but don’t notice a change. I don’t know what to do anymore.
The itching aspect sounds like you have polycythemia.
I have the exact same symptoms although it’s primarily just in my arms and hands and to a lesser extent, my legs and feet. I’m trying to find a way to reach out to the author directly. I have seen doctors as well and get the same lame excuses. I have been trying to find answers for this for at least 15 years and the most likely explanation I have come up with at this point is thoracic outlet syndrome exacerbated by years and years of competitive swimming.
I have heard that this condition could also be related to blue-light toxicity from using computer/phone/tablets/TV screens for too long without using blue-blocking glasses and not getting outside in the sun enough, and this can disrupt the myelination of the nerves of the autonomic nervous system.
There is no doubt that thiamine deficiency is the commonest cause of Functional Dysautonomia. The mechanism is in the brainstem and limbic system, a part of the brain that is particularly sensitive to TD. The changes in the peripheral circulation further suggest TD and the complaint of persistent anxiety indicates that the sympathetic arm of the autonomic nervous system is dominant. There may well be a genetic cause such as a lack of thiamine transporters, suggesting that a high dose of TTFD is required. Please look at other posts on this forum to avoid repetition.
Two major clues. Functional dysautonomia at the age of 12 and an affected brother strongly suggest a genetic/diet combination. I would suggest a supplement of thiamine AND B complex + a multivitamin
Thank you for your response. I am planning on adding a b-complex and multivitamin to the 200mg Allithiamine and 125mg magnesium I am taking. Though I am unsure how long I should stay at that dosage before increasing Allithiamin again.
Do you take other B vitamins? They are synergistic & all rely on each other in various ways, so it may be better to take a good complex like B-50. Taking one in isolation may potentially deplete others. Many people these days seem to have issues metabolising & utilising B vitamins. The fact that you were ok until you were around age 12 suggests something may have changed back then. A vaccine? An antibiotic? A drug? Who knows. But if B vitamin metabolism was deranged back then, it could explain these issues. And if you have issues with one then you likely have issues metabolising them all.
What is your diet? A diet high in refined carbohydrates, wheat, sugar & pasteurised (denatured) dairy gobbles up what little B vitamins are obtained from other sources before ever the body gets a look in, as B vitamins are needed for the body to process these nutrient-robbing pseudo-foods…..
I am not taking any other vitamins, though I am planning on adding a b-complex and multivitamin to the 200mg of Allithiamine and magnesium I am currently taking.
I’ve searched but can’t seem to find the dose ratio for TTFD/Magnesium.Does anyone know where that is and can post the link? I started out one week ago today w/TTFD at 100mg/day and today increased to 150.
1) Also, what are side effects of increasing too quickly? (None, I think per YouTube interview w/ Dr Marrs)
2) What type of magnesium is recommended?
3) Why do Dys symptoms get worse at night? (Dizzy, throat tight, R foot tingly, numb) Google doesn’t know.
4) Thanks in advance.
Have you tried other forms of thiamine and other absorption paths? Benfo, HCl, TPP, or mononitrate? Also, topical, sublingual, and suppository in addition to oral.
Are you taking any other Bs?
Fat solubles?
What’s your diet like?
How’s your thyroid?
How’s your digestion?
Any other supplements like dhea, pregnenolone, taurine, etc?
How are you waking pulse and temps (both under tongue and armpit)?
What form of Mg are you taking?
Your hand picture looks a lot like livedo reticularis too.
I am not currently taking any other B’s though I plan to start taking a B complex and multivitamin. I do not take any other supplements than the 200mg Allithiamine and magnesium right now. I would consider my diet to be very good now. I mainly eat meat, vegetable, and fruit and stay away from sugar and fast food. Yes, I think it is livedo reticularis, I will get it lightly on my arms when I am cold as well.
I have similar problems with peripheral circulation, and mine are exacerbated by heat and cold as well. My blood pools in my feet like yours, and you seem to show chilblains on two of your toes — I get chilblains, too. I also show other signs of dysautonomia (decades-long orthostatic hypotension) plus chronic fatigue, cardiac issues, and swollen ankles. I am new to thiamine and hope it will help both of us.
Check your B12 level, Raynaud phenomenon is linked to high homocysteine.
Ciao sei qui 🙂
Ho letto il tuo blog in italiano. Io sono Italia. Alla fine hai provato la terapia con la timina, io ci sto provando da poco più di un anno e le cose stanno andando bene anche se è un up and down continuo. Fammi sapere 🙂
Hello, may I ask if you have ever had your uric acid levels tested?
Hi, no I have not had my uric acid levels tested, I am unfamiliar with uric acid.