Very underweight- could POTS cause this?

[lavenderpotsie]

Hello everyone. I was diagnosed with POTS around 16 yrs old. I have been underweight my whole life. I have not gained any weight since being diagnosed with POTS- I am now 20. I do sometimes suffer from a lack of appetite, but there have been other times where my appetite has been good or even elevated. I have never been above 90 pounds and I am 5 ft 2. Currently I am 85 pounds. My lowest weight was 81. I honestly want to cry, and I am so scared. My POTS has gotten so much worse since I've been at this weight. If I calculate my BMI, that puts me at 15.5! Does anyone else suffer from a very low body weight? I was thinking that since my heart is always going fast and my body is generally working harder than others, it would burn more calories. I am fed up and would appreciate any advice I can get.

[Lainy]

I completely understand how scary this is. I've been struggling with POTS symptoms since I was 16 and recently diagnosed(now 28) And just like you, have always been very underweight. My lowest BMI was 14.4 just earlier this year and unless it's something you've gone through yourself, I think it's hard for others to understand just how frightening it is to feel like your body is melting away before your eyes. 

My cardiologist advised me to try and put on 15-20lbs and load up on the high-calorie junk food. (advice he said he would never give any of his other patients) He thinks putting on weight would help 'slow down' my body and its metabolism. Easier said than done though. But I'm slowly making progress- if I can gain and maintain weight then it's not impossible = P

My appetite comes and goes and I try to take advantage of it when it's high. Something that's really helped me is actually avoiding large meals, and having 6 smaller meals plus snacks through the day. It's easier on my body and I can get more calories in my day that way.  You can also do something like Carnation breakfast shakes or Pediasure in between or on low appetite days.  And my personal favorite is anything potato - you can really load on the salt which is another bonus for POTSies. 

I know it's frustrating and scary and hard not to give up when you step on that scale and see another 10lbs disappear but it's worth it to fight for it. I've gained 15lbs and I'm definitely seeing improvement in my symptoms and feeling stronger. 

[MomtoGiuliana]

I empathize bc I was also quite thin as a teen and young adult and wanted to gain weight but it was difficult.  I am 5'10" and I weighed around 120 until my mid 20s when I finally put slightly more weight on.  I did not develop significant POTS symptoms until pregnancy myself.  However I have read that POTS patients tend to be thin (although not always the case) and that being thin can make the symptoms worse bc of lower blood volume in a thin person.  Whenever I have a relapse of POTS I lose weight.  I think part of it is less appetite or GI involvement, however that is an interesting question as to whether having POTS affects metabolism.

Hope you can put a little more weight on and start to feel better.  What does your doctor say?

[jklass44]

I have also read somewhere that POTS patients tend to be on the thinner side, although not always true. 

As a teen I would always bounce between slightly under weight to an ideal weight. Throughout my 20s and now in my later 20s I've lost a lot more and am considered underweight. My appetite definitely increases during my period, which I try to take advantage of and eat as much as I can at that time. Otherwise my stomach just doesn't seem to be able to hold a lot of food! I get nauseous and extremely bloated if I try and eat a "normal" meal. I agree with the above comment stating that GI involvement plays a role in this. 

Good luck. I hope you feel better soon!

[Pistol]

I have always been very underweight - and when I started with clinical POTS symptoms ( that means actually noticeable and provable symptoms ) I was at my lowest. At that time I was very much stressed and active, unable to "stand still". Since then I am better - diagnosed, medicated, living within my limitations, following a diet ( low acid, high protein, GI friendly ) and I am now a healthy BMI. I believe that the high adrenaline levels ( I have hyperadrenergic POTS ) always kept my metabolism revving and I could not gain weight. Now I am limited in my activities ( exercise daily but controlled ). In my own personal case POTS contributed to not being able to gain weight and I also have many nutritional deficiencies ( B12, iron, VitD ) that are caused by inability to absorb nutrients through my GI tract. Replenishng those nutrients by prescription strength supplements has greatly improved my weight as well as my energy and overall health.  

[p8d]

Oh sweetie.  I am 5’3” and shortly after being diagnosed at 52 I ended up at 84#.  I had no appetite and pain whenever I ate.  I saw a gastroenterologist who was familiar with dysautonomia and after dropping 20# in two weeks I was hospitalized for 5 days and had a number of tests and TPN (nutrition and fats) for 6 weeks.  I ate several small meals and snacks a day, drank protein shakes (Garden of Life) and was told to eat junk food in addition to a balanced diet, anything to get calories.  I ate a lot of sausage and potatoes.  The gastroenterologist put me on gabapentin for the pain and now 4 years later with beta and alpha blockers and exercise with a PT I am at 125# and having to buy new, bigger clothes.  I will say that I didn’t realize that I was experiencing stomach pain.  I know this sounds weird but my muddled mind, when asked if I had pain always said no but then after I would eat I felt like I had eaten glass.  It took a cousin who was babysitting me to say that is pain.  Are you seeing a specialist?  Are you hyperadregenic? As others have said, if I can survive and now weigh so much so can you.  My neurologist told me yesterday for the first time that she was really worried about me during that time.  The hardest work I have ever done was get on the stationary bike for 3 minutes a day when I got home from the hospital.  The gastroenterologist saved my life, please be sure to see your Dr for help.  Having gone through that I vowed that I would never go back there and that’s what motivates me to do my aerobic and strength training exercises everyday.  

[bombsh3ll]

I've always been slim but abruptly lost 6kg in the 3-4 weeks after my POTS onset. This did stabilize, and I regained it over the following few months with mirtazapine and also having much lower calorie expenditure due to my new chairbound life whereas I had previously been very active.

I think my initial weight loss had to be fluid loss, coming off that quickly. I do still find it a chore to eat (before POTS I loved my food) due to diversion of much needed blood from my brain and presyncope related nausea. At first when reading all about dysautonomia, I had convinced myself I had gastroparesis, but fortunately this doesn't seem to be the case, it is more that being lightheaded all the time doesn't make for a good appetite. I often have smoothies and supplement shakes. 

B xxx

[StayAtHomeMom]

I was always skinny (100 lbs at 5'4") until I had kids and over the last 10 years I have put on 80 lbs. I think it just depends on the person. I would make sure you get a complete thyroid check up though. Just to make sure there isn't an underlying thyroid condition causing you POTS. If that is clear I wouldn't worry about it too much unless the doctors are worried. Some people are just built like that. I am sorry your POTS is giving you such a hard time right now. I hope you feel better soon. 

[yogini]

When your heart is beating fast your body is burning calories. It's like you are in exercise mode all the time.  When I was very sick I also lost a lot of weight around that time.  It is like a chicken and egg situation - if you are sick you lose weight and the smaller you are the worse your symptoms can be.  This i sin part because when you lose weight, you may lose blood volume.  For me it was most important to have a lot of fluids and salt at that time.  I think you could also work with a nutritionist or look online to figure out your daily calorie intake and find ways to increase calories.  

At other times in my POTS I also gained too much weight because of the POTS.

I hope you feel better soon.

[Guest KiminOrlando]

1 hour ago, yogini said:

When your heart is beating fast your body is burning calories. It's like you are in exercise mode all the time.

I wish that was the case for me. I would be thinner, but instead, I am fat. 😩 If I could share the wealth, I would. I know both situations are troubling. You are right though. My heart is doing a cardio workout at least half the time. I feel like I am in a perpetual Zumba class, but my body looks like I am a marathon eater. Neither is true. I truly believe there is something with the metabolic system that is either triggered or not triggered by dysautonomia. I wish someone would figure that out. In the meantime, I hope they can find a solution for you to help you. Did they rule out gastroparesis? It kills appetite and causes nausea.