I have been relatively healthy my entire life until my senior year in college when, after months eating poorly, exercising intensely, and partying, as college students do, I developed extreme acne. In my attempt to resolve the acne, I began using a topical ointment called Tretinoin, prescribed by my dermatologist, and then Accutane, when the Tretinoin didn’t work. From that point forward, my health spiraled. I developed severe and painful blood pooling in my arms and legs to the point that they would turn purple. I developed tachycardia upon standing, which would eventually be diagnosed as POTS, and I have heart palpitations. I am always fatigued and always dizzy. I have dry eyes, am constipated and bloated, and have this weird pressure in my head. It’s not a headache but a weird throbbing/tingling sensation.
After dozens of doctors, multiple diagnoses and medications, my health has continued to decline. I tried a low vitamin A diet based upon the theory that the Accutane caused vitamin A toxicity, but that made matters worse. I tried thiamine, but went too high too fast, and my symptoms worsened. I am at a loss as to what to do now. Below is my story. Please help.
History
I grew up very healthy and never had any health problems. I really only ever struggled with anxiety as a child and developed some intermittent depression at different periods in my life. During college, I was mostly healthy and made an effort to eat well and exercise regularly. Like most college students, I drank alcohol with my friends. I noticed that even when we drank the same amount, I suffered from horrible hangovers, while they were mostly fine.
My senior year of college was the beginning of my demise. I began making poor food decisions the summer before. I was substituting whole foods for protein shakes (I always drank the Orgain brand) and simply not eating enough calories. I maintained this throughout my senior year. I continued to push myself to work out and to party with my friends. I believe that the poor eating decisions, the excessive exercise and drinking triggered my health problems.
Acne and Accutane
I began to get a lot of acne, which persisted throughout my senior year. I became very depressed, as I never had dealt with acne before. It felt like I was going through a second puberty, that my body was changing and there was nothing I could do about it. My periods were also irregular, sometimes every other month, and sometimes I didn’t menstruate at all.
I saw a dermatologist for the acne and he prescribed a topical ointment called Tretinoin, which blew up my face even more. He also pushed birth control. I had tried a Nexplanon implant previously, but I only lasted 5 months before I got it removed. It worsened my anxiety significantly and made me gain a lot of weight. So, I did not take the birth control he recommended.
He suggested Accutane as well, but as I scrolled through social media platforms, despite the positive reviews, there were many people who had horrible reactions and warned me against it. I decided not to take it, at least initially, but my acne kept getting worse.
I tried taking vitamins and minerals but nothing was helping quickly or meaningfully like I wanted it to. I graduated with my acne at its worst and I broke down on my graduation day, as my life was taking a monumental turn. Nothing was happening according to my plan. My job had also fallen through and this was devastating. The job market for my field of work took an awful turn. This was my breaking point. I decided to take Accutane after graduating. Looking back, the acne was incredibly insignificant compared to the devastating medical conditions I was about to experience as a result of this drug.
After I graduated, I still had a terrible feeling about taking Accutane, as I also had some IBS problems (acid reflux, mood issues, stomach discomfort and pain) though not bad. I went on my course starting June 2023 and aimed to be done by December 2023. I went through those first months feeling okay. Then, I bumped up my dose to 40mg and my body began to change. The course of my life was seemingly altered forever.
The Accutane Spiral
I noticed in my Pilates class one day that upon doing a plank exercise that my arms hurt. I remember looking down and seeing veins sticking out of my forearms. The pain was unbearable. It was like someone stuck an iron rod in my arm. The intensity of this phenomenon would waver, and at times my arms and feet would just get very red, like from a sauna or working out, but as the weeks passed it became very severe with the veins protruding and filling up with blood until it seemed like they were about to burst. I could not walk or let my arms hang at my sides without my arms filling up with blood. It was like gravity was pulling my body downward and my body could not resist it.
Around this time the constipation, fatigue, and throat gripping anxiety also started. I was actually somehow more focused on constipation, and because I’m an idiot, I tried all sorts of herbal therapies. Nothing worked except magnesium for sleep and the anxiety at times.
After coming back from a family vacation to Hawaii of late September 2023, where I did not take Accutane and the blood pooling went away completely, I began taking Accutane again at the higher dose. Everything, the constipation, blood pooling, and insane anxiety came back and stayed. I ignored all the signs from my body to stop, partially because my dermatologist told me that the blood pooling was unrelated. I finished my course at the end of December 2023 just before the New Year. At the time, it was cold where I lived and my symptoms were not merely as bad as they are now. Thus, the urgency to see doctors for this condition was reduced. In total, my Accutane course was June 2023 – December 2023.
In March 2024, I had septoplasty surgery under general anesthesia. Another stressor that my body did not need.
A New Job, an Inhospitable Climate, and Exploding Veins
In May 2024, I finally got a job and moved to Texas in May 2024. I was so happy to finally have a job out of college. I had worked very hard to get the job in a very difficult market. When I arrived, I tried to ignore my awful blood pooling, to make friends, and start my life. The heat and humidity, however, made everything worse. If I went outside, for anything, my arms would very noticeably fill up with blood and the veins would protrude so badly they looked as if they were about to burst.
At a loss for what to do, I began searching for answers online. I found a condition called POTS (postural orthostatic tachycardia syndrome) and many of the symptoms fit, even though my heart rate did not increase upon standing… yet. That would soon change.
Maybe POTS?
About three weeks after moving to Texas, I began the long road of multiple doctor’s appointments to figure this out. The first doctor that I saw was a vascular surgeon. He examined me and suggested maybe Thoracic Outlet syndrome, but told me mostly likely this was something else without any other suggestions. My primary care doctor did not know what to do and kindly put in any referrals that I requested. My next appointment was with a cardiologist. He knew what it was. He looked at me with much pity as he suggested that I had POTS, and that there was no cure. The tilt table test confirmed it. My heart rate at rest went as low as 45bpm and as high as 100 bpm. Even with the diagnosis, the cardiologist suggested I keep looking for a root cause because the results were abnormal. My blood pressure fluctuated and dropped to 70/50 when I stood up and went back up to the 100/60 range. He said that my body was trying to compensate for the fall in blood pressure and this was not technically POTS. This made me feel hopeful, but what I did not know yet is that this meant nothing, and POTS is just a broad category for a bunch of symptoms.
Maybe MCAS?
I next pursued a diagnosis of MCAS, which is the most common underlying cause of POTS. I had urine/blood work done that showed high Leutrotriene E4, an indicator of MCAS. My allergist then referred me to another immunologist, as she did not feel comfortable diagnosis MCAS. There was an almost 4 month wait for this appointment.
I pursued several other doctors like endocrinologist, a rheumatologist, basic neurologist, vascular medicine doctor, gynecologist, and some others that I am probably forgetting. No one had an answer, but did extensive testing that showed how “healthy” I was.
Later that year in November, I was asked to be in a research study by UTSW Neurology. I thought my life was about to change, because the doctor that led this study was also the lead researcher and author of many leading studies on POTS. I stayed at the hospital for an entire day as they did the many rounds of testing and many more on November 5th, 2024. They took skin biopsies, had me breath through all sorts of tubes and took 50+ vials of blood. The results are below:
- Skin biopsies for SFN – normal
- Catecholamine testing sitting and standing found slightly high norepinephrine
- Autoimmune markers showed abnormal ANA with a low titer. This has been normal several times before so possibly a fluke.
- Electrolytes were all normal
- Vitamin D – 70, which is normal
- Tilt table and autonomic testing like QSart and HRV – slightly positive for POTS. Heart rate goes from 50 bpm to 90/100 bpm.
- MCAS panel again was normal except high Leukotriene E4 at 200.
- The comprehensive medical panel (CMP) came back with slightly high ALT at 40.
- CBC came back with anemia. Since my CBC was normal 5 days prior to this test, a hematologist told me that this was a mistake otherwise I would have had trauma or blood loss to cause it (not a coincidence I’m sure). During the study, my RBC was at 3.8, HCT at 32.4, HgB at 10.8. Iron has been low before but was normal at the time of the study. I just got my iron panel recently and it was very normal again. It is unpredictable.
- Low T3 and low glucose. At the time of the study, T3 was 72 and Glucose was 61. However, also at the time of the study, I was not dealing with much fatigue so I don’t think this was causing my core issues. Recently, I had blood work done and both were normal again.
- Slightly high aldosterone 22.
- Platelets were on the lower end at 16, but normal.
All of These Tests and No Answers
Devastatingly, nothing came back that explains my symptoms, at least according to my neurologist and all my other doctors. The research/autonomic neurologist who authored this study told me to start taking LDN as he believes there is an immune component. I also saw an immunologist at the hospital that same day and she diagnosed me with MCAS and put me on Ketotifen. I remember asking her if she thought that MCAS could cause my blood pooling and I vividly remember her saying “oh I don’t know about that”. This made me realize that I should not trust these doctors, but I took the meds as I had no other options at the time.
I made it to December 2024 on both Ketotifen and LDN when my HR started to increase at rest to around 80 bpm and I started to feel very breathless and fatigued. I tried LDN off and on for another few months starting at the lowest possible dose, but every time I tried increasing, I was met with palpitations and worsened blood pooling. I still don’t know how LDN causes this, but it really bothers me that I don’t know.
I took a break from the LDN at the beginning of 2025. I tried ONLY taking Ketotifen without LDN and the palpitations went away, so I knew it was the LDN causing the palpitations. However, Ketotifen did not help either, and made me so dizzy that I could barely drive. It felt like my head was in a fish bowl. I tried adding in the LDN again at only .5 mg, and made it to barely 2 weeks again before my heart was racing so much that I could no longer stand to make breakfast in the morning. I called it quits completely on LDN and Ketotifen as of January 2025. They clearly were not working, and my doctors had admitted they did not know if the meds would help. It scared me to keep taking these meds if my doctors had so much uncertainty they would help.
Back to the Drawing Board. Enter the Lyme Brigade.
I spoke with a functional med doctor who told me that I may have Lyme disease and put me on antibiotics – Cephalexin, Nystatin, Doxycycline, Cefdinir and Hydroxychloroquine in February 2025. I had the same palpitations and felt like I could not breathe again. I would try working out and would be gasping for air. I made it maybe 2-3 weeks on this before I stopped (thank god).
And Then Methylene Blue
A Long Covid clinic at UTSW tried prescribing me Methylene Blue 25mg, twice daily, which I took for 3 weeks. It reduced my heart rate but was messing with my mood. I ended up stopping this, not because I couldn’t deal with the side effects, but I found something else that I truly believed was my root cause.
Was High Vitamin A the Problem?
I stumbled upon Grant Generex and Garrett Smith who have a naturopathic program adverting a low vitamin A diet to those damaged by the drug Accutane. The concept is that vitamin A and its derivatives cause high vitamin A concentrations and that then causes a liver condition called cholestasis. They argue that the damage caused by Accutane can be healed by going on a low vitamin A diet; like removing the thing that caused the problem.
Reading Grant’s story, he had kidney disease and was projected to have only 5 more years left to live. He went on this diet and fully reversed his fatal kidney disease and all other health problems.
I committed to the diet in April 2025 until recently, and except the a few weeks, where I had cheated a bit, I maintained the diet. Below is a list of foods I consumed for the last several months:
- Great Northern beans
- Ground turkey, chicken breast or ground beef all lean
- Some kind of whole grain: brown rice, wheat berries, buckwheat, whole wheat sourdough (it may have not been whole wheat)
- Coconut water for potassium
- Coffee only occasionally with some almond milk
- The diet was dairy free, and contained little to no calcium or vitamin D. I have since learned that as a result, I am now low in both of these nutrients.
One part of the diet is thiamine. It is highly recommended to take this in any dose, in combination with niacin (not niacinamide), selenium, and molybdenum and zinc picolinate.
Maybe Thiamine Is the Answer
Before adding in thiamine, I had become progressively fatigued from my new diet, and attributed it to the elimination of coffee. When I learned more about thiamine, its role in health and the symptoms related to low thiamine, I suspected the long list of weird health issues were all related to low thiamine. The issues with alcohol and extreme hangovers, may have been the first clues to a potential genetic predisposition to thiamine problems, and everything else, along with all of the medications, made matters worse.
On July 6, 2025, I began taking high doses of thiamine and other nutrients. In retrospect, I went too high too quickly and suffered from significant paradoxical reactions. It is possible that the high doses, without the full complement of other vitamins and minerals unleashed other deficiencies. Below is what I took.
- Methyl B12 2000 mcg
- Methyl folate 1000 mcg
- Thiamine HCL starting at 100 mg, increasing to 2000 mg, then adding in TTFD (Overton’s brand)
- Magnesium glycinate always 500 mg at night and some with thiamine hcl
- Potassium chloride throughout the day and sometimes coconut water
- Potassium bicarbonate 400 mg to handle any acidosis
- Selenium, molybdenum and zinc picolinate in supplement that has smallish doses together
- Niacin b3 from 100 mg -> 1000 mg (on my diet protocol in higher doses NOT niacinamide)
- B6 at times
Since starting the high dose thiamine and other vitamins/minerals listed above, I have had awful heart palpitations and fatigue. It has taken every last bit of my energy to try and live my life. I read about the paradox reactions, so I persevered. I also tried taking a break from the supplements for 3 weeks, but the palpitations did not go away. The heart palpitations are a 30bpm increase at rest and much more when I breathe in. My heart is pounding. My cardiologist did diagnose me with arrhythmia last year when I had my first tilt table test done for POTS, but I never felt it until starting thiamine. I never should have increased the dose, but thought maybe this would help. I also was afraid of stopping and losing any progress. They kept getting worse, the only thing that would help occasionally is coffee to slow down my HR.
A few weeks ago, I cut out thiamine completely alongside all B vitamins. I was at 1 – 2 grams per day of thiamine. This somehow made my palpitations even worse. I got some blood work done as well and it showed the following:
- Calcium borderline low at 8.7 (it was 9.3 last year before this diet)
- Vitamin D deficient at 29.4 (it was 70 last year before this diet)
- B12 was high at 3000 (this has happened before)
- B6 was slightly high
- Folate, MMA, and RBC folate all normal
Note – I don’t think I waited long enough until B vitamins were out of my system before this test
While searching HM for information, I found this article on Thiamine and Calcium Management and thought this had to be the missing piece. My body feels like it is telling me that it needs something. At first I thought it needs the ATP that thiamine helps to generate, but I had this in place. The heart palpitations have been consistent from when I started July 6th until today. Now I’m thinking that Vitamin D and calcium are the answer, since I have not been in the sun at all this summer or most of this year due to my blood pooling, and no calcium due to my diet.
Where I Am Now
So that brings my story to the present. I’ve lost most of my life to this. I’ve accepted that this is my life now and I’m trying to find a path forward. I try to be grateful for the fact my symptoms are much better in cooler climates and I have supportive friends and family. If anyone reading this has similar symptoms or has also had a similar reaction to a medication or Accutane please reach out in the comments. Finally, if anyone reading this is about to take Accutane, please don’t!
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