CK1

RAPID weight gain

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In the last 2 weeks I've gained serious weight. No change to anything, but now nothing fits, can't even get my t shirts over my belly, the difference is unbelievable. So much so that when i walked into my doctors 2 weeks apart he was shocked and got me straight on the scale, telling me that i was a completely different shape than i was just two weeks ago. Still brings us no closer to figuring this out, t's shocking. 2.5 years ago I was 12 stone something, now 19.5.. way way way over weight and i can't seem to do anything about it. Nor could have done it when I felt well if I tried! 

Is this even possible for Dysautonomia? got two months to wait to see a specialist and a tilt coming up this week. I just don't see many people from my searches with any more than a stone over months, not weeks. 

Gets me back thinking about Cushings, but i've been promised i don't have it, i've done so many bloods, MRI and CT's and seen two Endo's, who said the symptoms are similar but no signs of it at all.

Being this ill sucks..

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I had rapid weight gain when I came off of a birth control pill.  Some medications can cause this.  I think POTS can contribute due to water/sodium imbalance.  It helped me to cut back on carbs, as carbs seemed to make me really hold onto the weight (maybe due to water retention).  This could be a number of things, I hope you are able to get some help 

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Have they checked your thyroid? Ferritin? Prolactin? (My Dad had prolactinoma) If those are off, both cause weight gain because they mess with your metabolism. 

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Yeah my thyroid has been checked many times, Prolactin also. Ferritin I'd say because I have 4 pages of size 10 font of bloods, both my GP and Endo thought I had Cushing's for a while but we did a few tests, urine, blood, mri's and ct's and as well as it fits, I guess it's just it. 

Sodium imbalance, it's funny that you mention that Bluebonnet08, the last week i've been feeling dehydrated, it's why i went into my doctor after seeing him 2 weeks prior. Feels like i'm holding so much water, is there any good way to get rid of it? The thing that's the strangest, apart from now nothing fitting in two weeks, is my face doesn't even look the same, it's more round, i have no idea how i could put this type of weight on so quickly, nor did my GP. 

I have a calorie counter, 1300 calories is my limit...dysautonomia matches so well but rapid weight gain I don't really see mentioned...

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What did they do to check your adrenals? Have you been on prednisone or any corticosteroid? Are you on fludrocortisone?

They gave me Cushing's inadvertently. I also took a drug, Lyrica, that made me gain weight that quickly.

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Yeah, my adrenals have been checked many times, TSH, T4, T3 etc, I rang my Endo today actually, to check if he wanted to see me again, he has written a report saying he is very happy with all tests and that i've been tested for everything suspected so I am discharged. For Cushing's I did 4 24 Urine Tests, MRI and CT, so just got to say close, but no cigar. 

On none of those things. Beta Blockers right now is literally it. 

Over the last few weeks even my face is bigger. 

Hmmm, I hope this atomic specialist knows what's up as this thing has a lot to answer for. Today has been full of hot flashes, shakes etc. My nervous system seems like it's in a wreck. 

As much as don't advocate such extreme weight loss programs, i need to try something extreme. Bought 30 days worth of 2 smoothies a day for lunch and dinner, you are allowed 2 banana's and 2 coffees, oh and nuts in-between. Gonna do that religiously for 30 days and go into my GP's scales, if i have not at least stayed the same weight something is very wrong. 

I believe my metabolism is basically dormant, not sleeping for days and being too fatigued to exercise from exhaustion. When i do try it sends my adrenaline crazy, even a walk, 100 yards later and i'm overheating. Heck I can be normal temperature now in the shower, come out and within minutes be in a full sweat as if my temperature gauge internally is broken. 

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Same thing happenes to me. They ran ACTH blood test, did cortisol stimulation test and an 8 am cortisol? All normal? I wish someone would check my cortisol at midnight. I'm up until 3 - 5 am every night. I can't sleep earlier no matter what. I gained 70 lbs, can't lose anything no matter what I do. Can't do much exercise. I'm at a full sweat if I do anything but sit with my feet up.

I don't have answers. I eat frozen entrees, pre-made and calorie conscious, but nothing matters. The doctor thinks my metabolism is so messed up it doesn't do anything but store for 'later'. Very frustrating. I used to be thin. 😣

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Hi @KiminOrlando this may be an odd comment but - how are old are you? I started gaining weight ( always was underweight until POTS started ) when I was in my 40's ( considered a normal body-change ) and now I am constantly gaining weight although I eat very little compared to what the caloric intake should be for my BMI.  Yes- I am exercise-intolerant but I do move around to the best of my abilities every day and I do cores and weights as much as I can. The other day I had a flare and needed to go to hospital for fluids: 116 lbs. 3 days later: 119 lbs. No big feasts or major eating changes. Except the 4 L of fluid I got in the hospital ( but believe me: I peed them out! ). So - I personally believe that weightgain is what happens to us when we get older. If not - PLEASE someone proof me wrong??? 

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Mine started when I was 32 and my POTS got so bad I was struggling to get to work. I gained weight so fast, I washed clothes and tried to wear them the next week but they wouldn't fit, not just a little tight. It was like they weren't even mine. I saw my reflection in the mirror and didn't even recognize myself. That is such an odd feeling. My doctor told me something had to be going on because it was impossible to gain as much weight as I had even if I ate a whole pizza and washed it down with a 2 liter and a gallon of ice cream at every meal. It comes in spurts. 

Now, I'm older and I have accepted that I'm not going to be able to lose it. 

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I hear you KiminOrlando.. 

If i had KFC buckets for the last two weeks I couldn't have put this weight on. Again like you my clothes don't even seem like they were mine. Before I got sick I was a medium T shirt, now can't fit into an XXL it's absolutely shocking. A few hours later, I am still having hot flashes and huge eyes (i mean massive). I hope we can stabilise this, feel so ill.. 

 

Ps i don't think I have POTS, more Dysautonomia with adrenergic storm's or something 

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@CK1 I have dysautonomia with adrenergic storms, they diagnosed me with hyperadrenergic POTS. Have they checked your norepinephrine and dopamine levels? And … oh, do I hate those storms! Shaking, clammy skin, heart beating out of the chest, cold feet and hands, roaring in the ears … terrible! I rarely have them now since I am disabled and on tons of meds. When I do get them it is because I stood just a second too long, so I rest a lot between chores.  

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I did a catecholamine test, was very disappointed in the results but then again i'm not specialist, just thought Adrenaline would be off the scale:
Adrenaline 102 (<147) Noradrenalin 240 (<573) Dopamine 1590 (<3270) 

 

Tilt test with a cardiologist Friday but I don't think that's going to help as I don't think I've POTS because I am having more an issue with feeling constantly 'wired/stimulated', don't relate to the standing / sitting part. 

I live in overdrive and only high amounts of Benzo's so far out of 25 medications can stop it, even bring it down the next day 'off' the medication until the adrenaline shots up my veins or something stimulates me and it triggers. The best for a year they had was bipolar 'diagnoses' but after 25 medications including Quietapine 800mg, Olanzapine and Lithium having no effect, and my physiatrist refusing to adrenaline shooting down my veins, dilated eyes or shaking which he could visibly see, I just said enough and my GP agreed. Was like talking to the wall for a year.  

Think I'm looking at a ANS disorder. I have a atomic specialist in a few months,  I pray this is a diagnoses once and for all. It's been 3 years of feeling very ill with no one having any ideas until recently, when a Scandinavian doctor said he had seen Adrenergic storms it fitted it with the shakes, sweating, eyes, feeling stimulated but not elevated mood, no need for sleep etc. (had spent thousands and been to 70+ appointments with specialists, Endo, physiatrist who was awful, MRIs, CTs, you know the lot!)

I hear you on those symptoms, although; cold feet and hands, roaring in the ears would be two I don't have. 

 

AS: "Their judgment is impaired, their senses and pain threshold are heightened, and the level of the adrenalin in their bloodstream is more than most people ever experience.” This is so me, just dunno why that test didn't come in huge adrenaline levels.

Dysautonmia seems to explain why my pupils are huge and temperature is all over the place. 

"The most common scenario is the sympathetic nervous system remains dominant and the parasympathetic rarely turns on, when this occurs the body remains in fight or flight. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control."

Sorry I know you know all this, i'm just trying to get my own head around it and talk with people who actually know stuff on the subject, my GP is great but had never heard of POTS nor Dysautomomia! 

Sorry to hear that,  was the disability related to POTS? (sorry to bring it up, my Mum has MS, so i really do sympathise)  

How long have you been on medications? and diagnosed

have they made a difference? I need to get back to somewhat normality at some stage...

My new physiatrist agreed it's atomic symptoms but has written a recommendation for Guanfancine as she thinks it will bring down the stimulation, which makes sense as it's written in a study I read on Dysautonomia but... my GP surgery say they are going to have a meeting,  that means, i'll need that privately. 

 

Sorry this is long ://

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@CK1 - yes, I am disabled due to POTS. I have been symptomatic for 8 years and disabled for 4. And - I take guanfacine!! It really helped me - but it is only one med I take for POTS. In my case I have the most disabling symptoms due to vasoconstriction but also GI, brainfog, fatigue ( when I am not hyper ) and many more. 

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1 hour ago, yogini said:

Hi. This sounds unusual and I would ask the dr

I did, he had no answer, he and everyone to date has no answers for me about anything. But the weight thing is odd.  

49 minutes ago, Pistol said:

@CK1 - yes, I am disabled due to POTS. I have been symptomatic for 8 years and disabled for 4. And - I take guanfacine!! It really helped me - but it is only one med I take for POTS. In my case I have the most disabling symptoms due to vasoconstriction but also GI, brainfog, fatigue ( when I am not hyper ) and many more. 

Called my GP, finally got the answer, it's a no, they stated it's a stimulant, my private psychiatrist says it's not, so until i get a letter to someone higher, it's going to have to be a private script. Unbelievable. 

A lot of the POTS stuff I don't relate to, we will find out today though for my Tilt Test. Sounds like you've been through a lot. I have fatigue and brain fog, know them all too well. I just don't get how mine can appear to have came on so fast. You also scare me that you say 'when i am not hyper'...

Whatever is going on with me and the HYPER/adrenergic symptoms although constant, when i crash the cycle hard with Xanax for a few days, i get this hour of normal, it's so rare it's weird as I can't always make it happen and only get 30 Xanax every 2/3 months.  I kinda had this vision of somehow stopping the run away train with heavy medication for a period and it would stop or at least take something sedating enough to not dive in and out...I guess we will play it by ear

 

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Your doctor should at least run some tests or something instead of saying I don't know.

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He did urine that day, really had no answer. Then again he can't explain the fevers, shakes, huge eyes and no need for sleep neither. Everyone I've met so far is very confused, but as said think if i can make it till i see this autonomic specialist I might finally see someone who gets it. Seen a general Neuro once before and he listened and was very lost, said if it was gonna kill me i'd be dead two years ago, as if that was some type of answer..

I seem to live in a constant Adrenergic storm with Dysautonomia symptoms. Do you know if it's possible to have both these and not have Hyperadrenergic Pots? (or any type of POTS) 

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Have they checked for hypothalamic dysfunction? I’m not totally sure if the tests they ran would detect that. 

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 If you aren't sleeping and feel like you are on overdrive your metabolism should be speeding up, not slowing down.  Fevers are not a typical symptom of dysautonomia. Neither is rapid weight gain.  I would not focus on dieting because if you are gaining weight with 1300 calories there is a medical reason for it.  It would be more important to find that reason.  If your current primary doctor is at a loss maybe switching doctors would help.

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