Sudden Rapid Weight Loss

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Hi everyone again! Since last October I seem to have started rapidly losing weight (with the exception of my stomach area which is continuing to gain weight for yet unexplained reasons). The rest of my body however is becoming worryingly skinny, to the point my ribs are sticking out my chest and my knees look massive compaired to the rest of my legs.

I recently had a doctor check my weight, which was around 8.5 stone, previously I was well over 10 stone before. I appear to have shrunk too, with my height being 5'7" as opposed to 5'11 previously.

I suspect this this weight loss is related to my illness, just like all my other symptoms I've been getting the past 3 years with this illness. This is really worrying for me as I eat plenty of healthy food and take a good amount of fats in my diet. And I also spend most of my time in my house now and hardly ever go outside nowadays.

Do any of you guys on here have any idea what could possibly bring on rapid weight loss like this? Thanks guys once again!
 

BeADocToGoTo1

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Hopefully your doctor is crossing off things like cancer and has given you a battery of blood tests and scans like CT or MRI (with MRCP) of the abdomen.

Everyone will try to help you through their prism of personal experience, so please view my comments as such. Just in case you have not looked into this avenue, it might be worth crossing off the list. In particular exocrine pancreatic insufficiency (EPI) is often completely overlooked and can cause rapid weight loss. You could look into asking your doctor for some pancreatic enzyme prescription (e.g. Creon) to help with digestion to see if if helps. Have you checked whether you are eating enough macros? From the sound of it you are losing muscle as well, so supplementing with some amino acids might be worth looking into.

Have you looked into any form of nutrient deficiencies due to malabsorption, such as small intestinal bacterial overgrowth (SIBO), Candida yeast overgrowth, IBS, Crohn's and the one particularly close to my experience, exocrine pancreatic insufficiency (EPI). If you have recently had a lot of antibiotics, your microbiome may be out of balance, which can also hinder absorption.

Has your doctor done a comprehensive stool test?

This is the thread with more info on malabsorption, microbiome dysbiosis, exocrine pancreatic insufficiency, but every symptom in my case was essentially due to nutrient deficiencies and the downstream effects of SIBO, Candida and EPI:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/
 
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wabi-sabi

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HOw frightening! I experienced something like this when I tried a keto diet (Wahl's protocol) in the middle of a crash. Thought it would help and it made things so much worse. So for me the solution was lots of rest (my parents came to take care of me until the crash was over) and eating loads of carbs until I caught up with my metabolism.
 
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@BeADocToGoTo1 I've had the usual battery of routine tests the NHS do done twice, which includes blood sugar, cortisol, thyroid, liver function and kidney function tests, all of which came back fine. Had my white blood cell count checked many times as well and this checked out well too. I did get an x-ray of my bowels done to look for bowel motility issues (which I've had since birth) but no CT or MRI was done as doctors just assumed that my distended abdomen was related to my bowel issues, despite me never having it before the illness.

I'm not even sure what the doctors have ruled out, they haven't explained much to me at all. The doctors I've been seeing seem to be ignoring my concerns, arn't listening to me and seem to think I have a different, more trivial illness that will somehow cure itself and be all gone the next time I see them. My symptoms continue to steadily worsen in a degenerative manner, yet the last time I seen my GP, I he acted completely surprised when I complained that my condition had worsened, despite this being the main reason I've been constantly bugging doctors the past 3 years. For all I know, I could have cancer. Whatever this is I have, it seems to be progressive and will only keep getting worse until I find some way to treat it.

I'll have a look more into exocrine pancreatic insufficiency and see if it could be causing this weight loss or at least cross it off my list if it isn't. I'm confused though to what could bring this on suddenly within a month though, along with an illness I've had for 3 years causing degenerative symptoms, most of which are brain related. I reckon I am losing muscle too as I'm getting increasingly weaker, finding it harder to lift heavy objects and getting breathless more easily as time goes on. I'm not sure yet if I have any deficiecies in any vitamins/minerals or macros and I definitelly need to get some of these tested, especially B12 as I don't eat meat. I'll consider trying amino acid suppliments too as it's still something I haven't tried yet and might well be lacking in some of these.

And nope, I haven't had a comprehensive stool test done, that could be worth looking into as well.

@wabi-sabi I tried a keto diet for a few months and it didn't have any effect at all on any of my symptoms. But I'm sorry to hear it affected you in this way and ended up with a crash like this. Our bodies are all different and going carb free isn't such a good idea for some of us I guess. But I'm glad to hear you managed to get over this crash by replenishing your carbs.
 

BeADocToGoTo1

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Losing weight quickly is always alarming, especially if there was no change in diet or medicine. I am surprised your doctors are not taking it more seriously. Perhaps look into a top notch gastroenterologist or a functional medicine specialist.

Nutrients


If you have not already, I would take a serious look at what your are eating and drinking. Calculate what your body needs for total daily calories. When you are healing, you will need more temporarily. For a while I used medical food like Metagenics GI Sustain. Are you able to stomach medical food or protein powders (make sure they are super clean, organic, no sugar or fillers)? Just to get a bit more calories and micro-nutrients in easy form.

An app like MyNetDiary may help get a handle on quantities you are currently consuming of the macros. You may not be getting enough calories, and on top of that, if there is any level of malabsorption those nutrients and calories will end up in the toilet.

Tests

There is a lab in the UK for Genova Diagnostics that do helpful nutrient testing. Sadly, often insurance does not cover it.

If you have not already, here are a few tests you could look into:

1. Genova Diagnostics - FMV - Gives a great overall picture of nutrient deficiencies, neurotransmitter metabolites, microbiome dysbiosis including SIBO and candida, pancreatic enzyme issues, and many more. Biochemistry and metabolomics in practice. This test should be standard for all primary care and family practice doctors as a regular preventative maintenance test, and for anything chronic or hard to diagnose. Great Plains Laboratories has similar tests.

2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.

3. Small intestinal bacterial overgrowth (SIBO) breath test, for example, Commonwealth Diagnostics International. But the first one will also provide you with SIBO indicators.

4. 24 hour fecal fat test (indicator of pancreatic enzymes and malabsorption)

5. MRI MRCP with contrast - Gives a great picture of pancreas and ducts, gallbladder and ducts, liver, stomach, intestines.

6. Stool test: fecal fat level and distribution (checks if you have issues with different types of fat intake and digestion). A 24 hour collection test is pretty standard.

7. Stool test pancreatic elastase

8. Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)

9. Stool test chymotrypsin (similar to, but not as accurate as elastase test)

10. Intestinal permeability. Intestinal permeability (a.k.a. leaky gut) is something that your Gastro can also test for. The one I did was: Cyrex Laboratories - Intestinal Antigenic Permeability Screen. It measures intestinal permeability to large molecules, which can cause autoimmune reactions, inflammation, food sensitivities, malabsorption, etc.

Another element to check is:

Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI? Have you tried the simple selftest

A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).

Gallbladder: Yet another element that is important in breaking down food and thus any gallbladder issues can cause malabsorption. Another thing that should be ruled out is any gallbladder issues and functioning.
 

Marylib

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@SeanQHX1 How's your appetite? Do you get hungry or are you forcing yourself to eat? I only ask because sometimes I lose my appetite completely and though I try to eat, I don't want to. Otherwise, I am afraid I am not much help, because it seems you are indeed investigating a new symptom (weight loss) and it is always important to bring up a new symptom. As far as the loss in height is concerned, I have no explanation other than what happens to some people as they age. I hope you the doctors take you seriously and do everything possible to explain the loss in weight and in your height measurement. I know how distressing this must be.
 

percyval577

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Maybe this can mean anything:
A deficiency in Cr may result in glucose intolerance, elevated circulating insulin, fasting hyperglycemia, and even impair growth [9].
page 2 from effects of chromium supplement on glycated hemoglobin ... diabetes mellitus. Yin and Phung 2015, a meta-analysis.

It seems that I have a need for chromium similar to a need of zinc, both may be manifesting in teeth and mouth cavity health, not too nice. Both times while improving I seem/ed to have an elevated need for zinc, resulting in gum and teeth issues (both times I was also more confused). Since a root treatment chromium seems to influence my bones. I think that the brain, more specifically the basal ganglion, is using the metals up, having a huge need.

Chromium can have side effects, albeit an essential micro-nutrition (follow link below for instance).

So, I have improved my treatment, and it´s pretty complex now (post for now).
 

uglevod

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during chronic endotoxemia the body primary burn fat for fuel - I have the same thing(rapid weight loss) if I overdo with anti bacteria treatment; white rice(with chicken) is one of the things which helps me to keep some weight
 
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@BeADocToGoTo1 Thanks so much for all this info, especially the recommended tests you've listed here.

As I live in the UK and don't get medical insurance (I'm with the NHS), I'll be paying about £200-£400 per test (£400 for the 2.0 stool test) which is a lot of money to part with, especially since my only income is disability benefits which my government are threatening to take away. But that said, I still have more money than time left on this planet to diagnose and treat this illness so I will definitely be getting a few of these done, I just have to choose wisely. The FMV looks like the best one to start with I'd say.

I've tried the self-test with baking soda you mentioned a few times and my stomach fairly gurgles away within the 5 minutes so I reckon my stomach acid PH is fine.

I'll also look into getting some medical food to make sure I'm not lacking in any nutrients. The GI Sustain definitely looks like a promising one for me to take as I see that it's completely clean with no junk ingredients.

@Marylib My appetite is fine the vast majority of the time, although there are occasions where I feel slightly nauseous and don't feel like eating all day which seem to happen randomly for unexplained reasons. In these cases though, I still eat regardless of my hunger levels.

Yep it is worrying when symptoms like this appear out of the blue. And doctors need to be taking them more seriously, especially if they keep getting worse. The longer you leave worsening symptoms untreated for, you run out of options and often in cases lead to permeant damage that's untreatable.
 

BeADocToGoTo1

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To save money, the #4-9 tests are very standard and may be covered by your NHS doctor. Those were even covered by my insurance, and you may have heard about the state of affairs on health insurance in the states. Since Metagenics is a US based company, there will likely be UK based versions that might be cheaper. Your gastro may have some ideas on good quality UK versions of medical food.

Regarding nausea, it is a symptom I had for many months before the diagnosis, and at some point had to take anti-nausea meds for a while to keep food down. Microbiome dysbiosis, EPI, food sensitivities can cause this, but of course there are many reasons, including from any supplements or medication you may be taking.
 

winterschlaf

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Hello @SeanQHX1

I don't know if my account will resonate with you but perhaps will be useful in ruling things out. I know how frightening rapid weight loss of unknown origin can be!

I experienced such a weight loss (4+ stone in 4months) this last year, in that pattern - going rapidly from limbs and shoulders, but staying around my middle, altering my usual shape.

From what I understand this can be the body's self protective response to rapid weight loss: attempting to protect the internal organs by retaining protective mass including water around the abdominal cavity.

The cause in my case turned out to be an inflamed gallbladder, gallstones, and hepatitis. Missed at a string of docs (GPs, A&E, urologist) at long last discovered in a hospital setting after an admission of several days.

In my case it came with bouts of increasingly severe diffuse pain in the torso and pelvis, which I initially took for "just" having developed fibromyalgia, and after about 9 months, many weeks of severe diarrhoea.

You don't mention experiencing any abdominal pain or tenderness, but I thought to mention it in case it's useful, because my bloodwork for inflammation of liver and biliary system persisted in being normal, right up until the day of emergency surgery, leaving my main symptoms of the dysfunction as rapid weight loss, digestive disfunction and diffuse pain. (I thought kidney stones at first, then inflammatory bowel disease as it progressed, and I know that was the way the GP was looking too.)

I suspect this type of negative bloodwork despite other symptoms is a function of an abnormal and hyperactive immune system - a rare nice (junior) doc at the hospital, aware of M.E., suggested the same to me as a private aside.

As for losing height, me too! Several cm, enough to change my BMI bracket markedly and several times at the docs over the last few years.

In my case this has come with an obvious change in whole body posture / head position and shape of neck; one of the things which has spurred me to investigate what's going on in my skull and spine, with upright MRIs (upcoming).

Wearing a neck brace for the first time this week, I feel as if I'm peering down at the world from atop a platform. I kept thinking, is this how tall I used to be?

W
 

Jyoti

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As for losing height, me too! Several cm, enough to change my BMI bracket markedly and several times at the docs over the last few years.
What is this about? Me too. I just found out I have lost 2.5 inches since this rotten illness hit. That DOES really change a BMI.

Glad you got the collar @winterschlaf . Does it help at all?

Thanks to all for sharing the many possible causes/areas to investigate in regard to sudden rapid weight loss.
 
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@BeADocToGoTo1 I'll mention these tests to my NHS doctor and see about getting a few of them done, especially as no stool test was ever done when I last saw a gastro. And I've ordered some UltraClear Sustain, which is basically the same Metagenics product made in the UK and sold cheaper. So hopefully this will help get some good extra nutrition into my body untill I get to the bottom of my weight loss.

Hi @winterschlaf

Yep, rapid weight loss like this is a very worrying symptom and I'd glad to hear you finally got to the bottom of yours. I know what it's like seeing doctor after doctor, test after test and getting nowhere further on so I imagine you must have been relieved when you found this out and finally started getting treatment for it. Also, I hope the neck brace is working out well for you so far.

It's interesting and a bit worrying to hear that you lost 4 stone in 4 months. In my case, it's been a month since this started and I appear to have lost 1 stone already.

In the case of my stomach and waist area getting bigger, I've had this problem for about 2 years, long before this weight loss. I've never had any pain here, although it does feel a little uncomfortable. It basically looks I have a beer belly now, before it was perfectly slim like the rest of my body. And I'm pretty sure that carbs or gluten arn't causing this.

I'm now wondering if any of my organs here could in fact be inflamed or compromised in some way, perhaps, I definitelly need to do further research in this area. My illness (which was diagnosed as CFS) began a day after I came back exhausted from a music festival. During my time at this festival I was drinking quite a lot of beer, not getting much sleep and walking for long distances carrying lots of heavy items. The following day I got back from the fesival, I woke up with a mild flu-like bug (very mild and nothing at all like Epstein-Barr or Herpes virus which often triggers CFS symptoms) and along with this, noticed a massive reduction in my cognitive abilities which made me fail a college course I was just days away from completing. It was basically like my brain had suddenly blown a fuse and packed in overnight. That's basically how all of this started for me. After this sudden flu/brain fog onset I took, I started developing more symptoms over the months and years, and since then they've only been getting steadily worse, with the weight loss being my most recent symptom to join the parade of worsening symptoms.

My GP at the time diagnosed me as having CFS based mostly on the assumption that my illness was post-viral. However I'd say there's a good chance that my body being so worn out from the festival, combined with the bug/virus I came down with could perhaps have depleted something in my body and led to some sort of injury somewhere, maybe due to inflammation or some autoimmune attack in one of my organs that's led to perminant damage that needs treatment. Hopefully some of these tests will shed some light on my symptoms.
 
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winterschlaf

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@BeADocToGoTo1

Hi @winterschlafIn the case of my stomach and waist area getting bigger, I've had this problem for about 2 years, long before this weight loss. I've never had any pain here, although it does feel a little uncomfortable. It basically looks I have a beer belly now, before it was perfectly slim like the rest of my body.
Hopefully some of these tests will shed some light on my symptoms.
I used to carry around a piece of paper from an NGO in the states designed to give to an anaesthesiologist if I ever needed emergency surgery, (ironically I'd stopped doing that by the time that situation actually arose!), which advised on anesthetising M.E. patients safely, and post surgical care.

I remember it had a section which said that M.E. patients very often had a kind of low grade hepatitis / inflammation of the liver. I've also read studies linking small liver size to M.E.

These are things which have come to mind as I've continued to really battle with hepatitis symptoms, post surgically, the liver being something of a "sorting office" for the body's waste products, of which there are undoubtedly more in a chronic inflammation / immune activation situation.

I don't mean to alarm you, pointing to major organs - perhaps my case is unusual. I definitely take it as part of the neuroimmune dysfunction which is central to this condition.

As I'm still struggling to manage my biliary troubles, 5 months post cholecystectomy (I'm seeing a medical herbalist as all pharmaceuticals seem to be putting me back in the hospital, which makes sense if my liver isn't functioning well. Having very slow, back-and-forth, but definite gains w that), there's little advice I can give you save the signs i missed in myself, before the weight loss began were:

. slightly discoloured eye whites - yellow/orangeish under the lower lid and in corners

. upper abdominal tenderness - mainly right quadrant but also centre and back under right shoulderblade, which could be mistaken for a muscle strain, more obvious when self-palpating the area and feeling not right / nauseous

. a year-long lead up of orange-ish, floating stool (sorry, folks) - indicating bile overproduction and non digestion of fats

. really gnarly acid reflux

As I say, docs missed it because it came in waves with gaps of weeks in-between at first, no blood or urine red flags, and an odd unwillingness on their part to do a proper manual abdominal exam, in the area of discomfort. (Given my time again I would insist).

I think there are a lot of digestive dysfunctions which come along with M.E. which are based more in the gut, and some very clued up people posting about how to explore and manage those on this forum, this thread included.

Seems you've had some good advice already and are pursuing it. Fingers crossed for you.

Things amiss in the gut seems more likely, but considering the whole skinny body, beer belly thing (me too and it's still there), it's could be worth considering casting a look over liver, kidneys, gallbladder, pancreas, imo.

Sending strength.
 
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winterschlaf

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What is this about? Me too. I just found out I have lost 2.5 inches since this rotten illness hit. That DOES really change a BMI.

Glad you got the collar @winterschlaf . Does it help at all?
In my case it's quite visually obvious that height loss is partly in my neck (I have a forward and "cocked" head position, giving me the aspect of a friendly dog), and the rest of my skeleton is twisted with height differences between each shoulder, knee and hip.

Do you notice anything similar, @Jyoti , @SeanQHX1 ? Or perhaps it's just me out here looking like a row of jangled coathangers...
Standing in front of a full length mirror at a distance unclothed / with form fitting clothes helps to see.

A saga-length update on the collar awaits you (and anybody else into long updates on neck trouble) here, @Jyoti c:

https://forums.phoenixrising.me/thr...ome-what-do-you-recommend.78380/#post-2246777
 
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BeADocToGoTo1

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...
. upper abdominal tenderness - mainly right quadrant but also centre and back under right shoulderblade, which could be mistaken for a muscle strain, more obvious when self-palpating the area and feeling not right / nauseous

. a year-long lead up of orange-ish, floating stool (sorry, folks) - indicating bile overproduction and non digestion of fats

. really gnarly acid reflux
....
All very familiar symptoms. The behind the shoulder blade pain you mention was a strange one and in my case due to my pancreas. No doctor ever put that together until after the fact. But, your body really sends you warning signals in unexpected places.

Are you taking something like oxbile supplements and pancreatic enzymes with food to help break down food better into usable nutrients?
 

winterschlaf

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All very familiar symptoms. The behind the shoulder blade pain you mention was a strange one and in my case due to my pancreas.

No doctor ever put that together until after the fact. But, your body really sends you warning signals in unexpected places.
It seems clear as day collating symptoms now, doesn't it? As in your case, for me was a mystery for the best part of a year.

I thought to mention to @SeanQHX1, hoping to shorten the agonies of the what the heck is going on?? phase

Not wanting to hijack this thread, hoping this info is useful in your (self-/) diagnostic process:

Once symptoms had become chronic, nine months from onset, GP just performed a lower abdominal exam, lab tested blood and stool for inflammatory bowel disease markers,

then when that came back clear, had no further suggestions despite what I now know to be classic symptoms of something amiss in the biliary system.

Eight months before that I had been prescribed heavy duty antibiotics for the same symptoms (fluoroquinolnes - perhaps you can picture what happened next. Spoiler: nothing good for my ligaments), which another two GPs & two A&E (ER if you're outside of the UK) urology docs thought could be an upper urinary tract infection or kidney stones, as I'd recently had a lower urinary tract infection.

When no good came of that, I *cough* self referred to a urology clinic (went and sat in the waiting room grimacing all morning and refused to budge!), they gave the kidney all clear and suggested "back pain".

Nonplussed, I decided my symptoms were having developed fibromyalgia / costocondritis -- due to family history --
and lay at home passing gallstones over xmas/ny 2018. Not recommended.

In June this year after five weeks of severe diarrhea and rapid weight loss, a locum GP I'd not met before /finally/ gave me a manual upper abdominal exam, and referred me directly to the upper abdo surgical intake ward.

It was a bit of a shock at that stage because, due to all the medical naysaying, from multiple quarters, I hadn't allowed myself to consider anything was seriously wrong, outside of The Usual (M.E., POTS etc) / working to accept the new muscleoskeletal pain business.

The point of my story is both to commiserate, to affirm that you are the best and only arbiter of your body's processes and whether they are running as they should,

and to advise gathering as much info as possible, logging even seemingly unrelated symptoms, and staying your course -- stamina allowing -- when suffering is dismissed.

I know that's no new strategy for an M.E. patient, and clearly you're already working on here, @SeanQHX1. You will find leads, and hopefully some relief won't be far behind.

@BeADocToGoTo1 , have you already shared your experiences with pancreas trouble this elsewhere on the forum, that you can link me to?

When I continued to have chronic upper abdo pain, post cholecystectomy, I also considered my pancreas. Spleen too.

Are you taking something like oxbile supplements and pancreatic enzymes with food to help break down food better into usable nutrients?
I'm under the care of a medical herbalist at the moment - some mast cell activation-like symptoms are making supplements as well as pharmaceuticals impossible,

but I'm slowly acclimatising to low doses of upper and lower digestive (liver/biliary, mouth, oesophagus, stomach and gut) and lymph-supporting herbs.

Very slow stabilisation and the beginning of gains only recently, with regards weight loss, liver colic and other biliary grumbles. Touch wood.

Very much hope things are moving in the right direction for you also.
 
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BeADocToGoTo1

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...
@BeADocToGoTo1 , have you already shared your experiences with pancreas trouble this elsewhere on the forum, that you can link me to?

When I continued to have chronic upper abdo pain, post cholecystectomy, I also considered my pancreas. Spleen too. I'm under the care of a medical herbalist at the moment - some mast cell activation-like symptoms are making supplements as well as pharmaceuticals impossible, but I'm slowly acclimatising to low doses of upper and lower digestive (liver/biliary, mouth, oesophagus, stomach and gut) and lymph-supporting herbs....
Hi @winterschlaf ,

There is a thread on pancreas, exocrine pancreatic insufficiency, microbiome dysbiosis and related damage that I had created here:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Since pancreatic enzymes and oxbile are animal products as opposed to hardcore pharmaceuticals you may be able to try them. or at least discuss them with your doctor and herbalist. Some doctors will prescribe pancrelipase like Creon (what I use) even as a way to determine if there is an issue by watching symptoms (e.g. stool quality, malabsorption, stomach issues) improve.
 

winterschlaf

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Hi @winterschlaf ,

There is a thread on pancreas, exocrine pancreatic insufficiency, microbiome dysbiosis and related damage that I had created here:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Since pancreatic enzymes and oxbile are animal products as opposed to hardcore pharmaceuticals you may be able to try them. or at least discuss them with your doctor and herbalist. Some doctors will prescribe pancrelipase like Creon (what I use) even as a way to determine if there is an issue by watching symptoms (e.g. stool quality, malabsorption, stomach issues) improve.
Thanks very much, @BeADocToGoTo1 , I'll check it out!