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What causes weight loss and appetite loss when suffering from Ehlers–Danlos syndrome?

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Practicing since : 2009
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THIS WILL BE EHLERS-DANLOS HYPERMOBILITY TYPE (NOSEOLOGY PREV NAME III) I AM WONDERING ABOUT 2 THINGS 1 MINOR 2ND MORE MAJOR.. i read a disturbing ltr from a specialist endoc...who claimed that most EDS III patients have large spectrum of cerebral disorders (never before i had heard or read such a thing any knowledge of same claimed in was anywhere on Google not for me!) 2nd part question are major organs??? or ANY reason not only inability to gain weight but seems a steady decline and I had read in researching that malabsorption and of absorption difficulties....what can be done to help me i have lost 33 lbs i'm not sure of yrs BUT from 129 healthy @ 5'6" to 96 now and it is horrid now getting very scary ,,,IS IT TRUE I WILL HAVE TO BE TUBE FED THRU STOMACH *not nasal due to also have Srogrens Disease and Hasimoto'sThyroid auto immune both btw i did NOT pick this category: User Selected Category : Environmental and Occupational Hazards.. Obviously this a (minorly psych.) & majorly gastroenterology question and have had the gastric emptying study all was ok i do have NOTHING but hard dark stool tho considered to be constipated i do not feel any pain but then I HAVE NEXT TO NO APPETITE either ...I'd wager 'some' of this due to great loss (all molars last 2 this past summer but they DID enable soft meat chewing of teeth to the Srogrens now protein powders the health weight gain drinks ensure , resource 2.o all have preservatives and WAY MANY vitamins etc and they make the srogrenS mouth dry situation completely UNBEARABLE; eggs, pastaa with crumbled meats beef chicken etc, hig cals like perogies or poutine FAIRLY LIMITED & have been on sensitivity to them for many years ,,,ALSO GALL BLADDER OUT IN 30-40'S not overweight ever lifetime ofcourse and i've read many srogie o r hashies many of just do! MAJOR DOSES GIVEN OF ACCUTANE 3O YRS AGO THEN 2 COURSES ONE WONDERS ABOUT LIVER 'HITS' s these were vanguard yrs new drug! much wrong and then? and only 3 yrs marriage 2nd husband who i cannot beleive WOULD HAVE EVER DONE threatens to divorce now as to being so ill now and using up his work pension? So anxiety and depression have now set in to a once very happy upbeat and make fun of all these befoer but not now when you yourself and are shocked there is no muscle or butt there is nothing but horridly wrinkled skin and you begin to be very afraid.....should i be having to have tube feeding what good will this do i dont absorb nutrients how can i absorb them in any way?
Posted Sun, 9 Mar 2014 in Medicines and Side Effects
Answered by Dr. Rakesh Madhyastha 21 hours later
Brief Answer: Need evaluation for loss of weight Detailed Answer: Hello Thanks for the query In order to answer your question I need the following information from you 1. What is your current height and weight? 2. How is your appetite? Are you able to eat 3 times a day? 3. What are the medications you are currently on? 4. When was the last time you got thyroid function test done? 5. How many times in a week do you pass stools? 6. Have you got any blood reports with you like complete blood count, blood sugar, etc? Please attach those reports Please get back to me, I am awaiting your reply Regards
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Follow-up: What causes weight loss and appetite loss when suffering from Ehlers–Danlos syndrome? 4 hours later
1. What is your current height and weight? 5'6" 2. How is your appetite? Are you able to eat 3 times a day? pretty much no appetite no once sometimes twice a day but am missing most chewing teeth makes it harder 3. What are the medications you are currently on? sorry forgot this one but the only ones new would hydromorph contin and gabapentin and them several yrs now plus cytomel (t3) 4. When was the last time you got thyroid function test dforgot this one IT IS NOR MEDS AND IS NOT THYROID OR SROGENS : PROF OF ENDOD U of A alberta HOSPTIAL SAYs 1.8 yrs ago as i had already been asking about weight loss...HE SAYS: EDS-3CAN BE ASSOCIATED WITH LOW WEIGHT & DIFFICULTY Absorption and that "SOME MALABSORPTION PARAMETERS SHOULD HAVE BEEN SCREENED FOR BUT DONT BELEIVE THEY EVER WERE (SAME DOC??? WHO THINKS ALL EDS 3 ARE MENTAL CASES! omigod THE insanity of their misinformation is staggerijng canada very behind on all EDS issues...ty let me know aSAP took me quite ahwile to type and proof this. vitamin B12 ( but he has to give by NEEDLE shots HE says my ileum does not absorb it) 727pmol/L (normal says lab) electrolytes in mmol/L sodium 137 potassium 4.4 chloride 104 total c02 20 v...below normal of (23-31) my gp says due to hyperventilation Anion Gap 13 Albumin 40 g/L (range 35-50) alkaliine Phosphatase 76 U/L Creatinine 57 umol/L estimated GFR 96 (flag ref >59) mL/min/1.73m2 (but says CHRONIC KIDNEY DISEASE defined by gfr 3 mg/mmol for more than 3 months Ferritine 55 ug/L CBC and DIFFERENTIAL (all normal well withing ranges) hgb 144 g/L rbc 4.38 10**12/L hct 0.42 L/L mcv 96 fl mchc 341g/L rdw 13,9 % plt 224 10**9/L wbc 6.0 " " neut 3.7 " " lymh1 .9 " " MONO 0.3 10**9/L EOS 0.2 " "" PERCENTAGES OF THE FOLLOWING:' NEUT 62 LYNPH 31 MONO 4 EOS 3 BASO 0 thats quite a few tests hope it helps - are you thinking onset diabetes as i was certainly NEVER EVER overweight BUT DID READ SOMEWHERE that eds can cause it to onset YES/NO?? AND THANK YOU I AWAIT XXXXXXX
Follow-up: What causes weight loss and appetite loss when suffering from Ehlers–Danlos syndrome? 2 minutes later
AND SORRY LAST TSH WAS MONTH AGO (I HAVE ONCE A MONTH NOW STANDING ORDER) .... tsh 1.09 and free t3 /4 were all normal range
Answered by Dr. Rakesh Madhyastha 11 hours later
Brief Answer: Hello Detailed Answer: Thanks for the response in detail, I really appreciate it. I am sorry for the short delay in my reply, I was on call at my hospital 1. EDS is not associated with malabsorption issues, since most of the parameters like iron, vit b12 and albumin is within normal limits it is unlikely that you are having malabsorption 2. I advice you to get an endoscopy done as a further work up of loss of appetite. You should approach a gastroenterologist for the same 3. You could also take Pantoprazole 40 mg once a day before food, sometimes loss of appetite could be due to acid peptic disease 4. Your TSH is also under control, continue taking your medications I hope I was of help, if you have any further queries please get back to me I wish you good health
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