11 years post op- confusing symptoms, labs

Lap RNY 11 years ago.  Lost weight, at about 5 years gained back some weight, lost it last year through diet and exercise with the help of a nutritionist.  The lifestyle changes I have made include eating low sugar and on plan probably 80% of the time. (35 ish grams of sugar a day most days) For the past 6 months I have been a bit lax on my plan but I am maintaining well.  For the past year + I have had frequent UTI's and YI's.  This past week I was unable to walk my UTI was so bad.  The first 3 days I was actually telling friends I had a back injury but couldn't put my finger on how it occurred.  My PCP made me go in refusing to call in meds. My GYN had cut me off of antibiotics and diflucan long before.When tested my urine was extremely high in sugar and she suspected with all above symptoms and dry skin, fatigue and extreme sickness upon eating things like a cupcake or starbucks frap I had T2 diabetes.  I would compare the feelings I get after eating sugar to that of dumping immediately post op when eating milk products.  I haven't had those issues in 9+ years.  My A1c was 6.0 but my glucose at the same time as the urine which was full of sugar was only 78.  Now today I get a call from the office that my Hemoglobin is 9 and Hematocrit 30 and that I need to get on Iron.  I have never had a diabetes or a severe anemia diagnosis.  My doctor is apparently going to call me tomorrow it was just staff that gave me these abnormal results the past 2 days. (Frustrating!)  I was told by the office to get into an endocrinologist etc. 

My question....long story short.... I wonder what if anything all of this has to do with surgery.  Honestly, surgery feels like a lifetime ago and is not really a part of my day to day worries or life.  I couldn't even remember my log on for this site.  The symptoms and lab values now worry me as I am a crappy patient and have been blessed with good health post op.  I know metabolic issues can be a result of long term post op RNY...anyone experience anything similar?

Hi,

I'm six years post and am having issues myself and after seeing many specialists am thinking it is all related to my original RNY which is also what my Primary suspected when I first saw him about my issues.  I am scheduled to see two different gastroenterologists, one who did my colonoscopy and endoscopy finding lesions in my small intestines where the stomach connects and a new one for a second opinion and to discuss the relationship of the bypass with my symptoms which are daily headaches, fatigue, low grade fevers and now I'm having many joint issues and having what seem to be autoimmune type symptoms which the specialist did not think were in their field of study so I'm back to original surgery my RNY.

I was diagnosed with Type 2 diabetes when prior to my surgery and once had the surgery they took me off Metformin and said I no longer have diabetes.  I'm not sure how correct that is because lately this year the symptons I have are different.  I feel ill no matter what I eat it seems to start the "illness" whi*****ludes all the symptoms I listed before.  So no matter if it's high in sugar/carbs etc... or just protein I feel ill.  I asked my endocrinologist if I should check my blood sugar anymore, this was less than a year ago and he said why bother you know when you eat something high in sugar and not to do it.  So I think there maybe some misinformation about diabetes and RNY surgery and I'm no doctor just someone who lives in this body years after having RNY and for over a year has started to feel like crap and no one seems to have answers.

So basically good luck and find doctors who will listen to you and don't stop until you find someone who will treat you.  Now that we're post RNY patients we have different needs and it can be hard to find a doctor who can see the relationship between the surgery and your symptoms and health problems.  Take care, Nan.

Lisa, I am 13 yrs post op. I never experienced dumping syndrome. That was both and bad. Have done great as far as RNY goes. Had gallbladder out by 2nd year. By 8 yrs I has to have a pacemaker put kin due to bradycardia.  Ok so now that's working well. I have developed fibromyalgia and chronic fatigue syndrome. Also Hashimotos disease. I take thyroid replacement for that. So the las maybe year, I've been having problems with anything I eat. Even little bites, my stomach immediately swells. It makes me miserable. I feel like my stomach stays puffy all the tim, it walk 3 miles every morning.i try to stay active, I was put on Victoza to help regulate sugar. Have been taking for 3 yrs. I've had an abdominal CT with nothing showing up.

Hi Lisa!

I am an 8 year grad of Lap RNY and I almost dropped my protein shake reading your post.  What you are describing is classic hypothyroidism.  I couldn't understand the change in me either about 2-1/2 years ago.  I had pretty much resumed a fairly normal diet and maintained all my weight loss but then suddenly I gained 20 pounds (yikes). I also had no energy.  I was diabetic before surgery (five shots a day) but haven't taken any kind of diabetic medicine/shot in 7-1/2 years.  I always had annual checkups with my surgeon who told me my vitamin levels were outstanding.  But no energy, puffy face, cold intolerance, dry skin, sleep problems, thinning hair (again), etc.

About the same time, an endocrinologist I had been seeing told me a nodule I'd had on my thyroid for about 5 years appeared "harder" and he ordered an ultrasound.  It showed a very small nodule (less than 1 cm) but definitely of the had variety (read bad) and he ordered an ultrasound-guided fine needle biopsy (FNA).  The FNA was unable to get enough cells to make a firm determination so the endo said we would watch it annually. 

Fast forward to August, 2012 when an MRI of my head and neck (due to a lot of pain and stiffness) showed the nodule clearly.  My PCP wanted to refer me to a new Endo since she felt "watching it" was not a good idea.  So I went and a complete thyroid panel (which the other Endo had never run) showed my TSH (thyroid stimulating hormone) to be somewhat on the high side.  He prescribed synthetic thyroid in a very conservative dose of 50 mcg.  My energy improved a lot, the pounds, however, stayed.  Next March (2013) my husband and I retired to the South to escape the Midwest's cold winters.  In August, I was plagued by recurring UTI's (at least 1 a month), sinus infections, low energy (again), etc.  An ENT I was seeing ordered a head MRI and another FNA.  I did not have a PCP established in the area, yet so when the MRI showed the nodule had doubled in size from a year ago, I started searching the internet.

I happened on two excellent sites:  About.com's Mary Shomon and Stop the Thyroid Madness.  I promptly contacted one of their "top docs" in my new area even though it was  89 miles away.  I self referred myself and after another FNA and surgery this past February, 2014 to remove 1/2 my thyroid, the pathology report came back that I had thyroid cancer and extensive Hashimoto's Disease.  Make no mistake, Lisa, there are good Endos and there are bad Endos.  A bad Endo will run only a TSH test and if it falls within the reference range, you will be told "You're Fine"!  "Losing weight is harder as you get older, just eat less and exercise more." and yadda, yadda, yaddda.  A good Endo will run a complete thyroid panel whi*****ludes TSH, T3, T4, Reverse T3 and Thyroid antibodies.  A "good" Endo will also treat you according to your symptoms, not just the lab values.

My cancer is so far not an issue.  The surgeon is confident he got it all and my last ultrasound (last Firiday) showed everything looking great.  However, the Hashimoto's is another story.  My T4 was upped to 75 mcgs daily after surgery and I was recently prescribed a very small dose of T3.  The difference is remarkable!  I have a good deal more energy and I'm down 17 of those extra 20 lbs I've been carrying around since 2012.  The Hashimoto's is a bit harder to deal with since so many things make it worse (like soy, iodine, sometimes gluten).  I've only known about mine since the last week of February so I'm still on a journey to figure out what works and what doesn't.  With Hashimoto's, the recurrence of cancer is greater in females over 60 (I'm 62), so I have to be vigilant.  I need to find a "good" Endo here in the South since I just fired the one I had seen only twice (even with the Hashi's diagnosis, she refused to run appropriate thyroid tests..she actually asked if I had "just made all that stuff up").  So my journey begins.

Sorry for the rambling reply.  Your symptoms just seemed to mirror a bunch of mine.  If you do nothing else, read Mary Shoman and Stop the Thyroid Madness websites.  I wish I had sooner, maybe it wouldn't have been cancer (no one knows).