marge I have some ?'s for you.

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Regular Member

Date Joined Jun 2009
Total Posts : 36
   Posted 6/20/2009 8:34 AM (GMT -6)   
I have been surfing all forums for aweek trying to figure out what is wrong with me & I ran across one of your replies that has really matched me. I do have cutaneous lupus & have not been on plaqunil because my doc talked me out of using a rheumy because he could handle this.( which i now know is a joke!) And he also wanted me to take a break from the med. about a month ago I started walking around dizzy all the time, which i just contributed to the lupus, because when I first had my original flare I was. They also removed my gallbladder because I was nautious, could not eat,ibs & now that I look at old doc records I was hypoglycemic but they never bothered to tell me. about a week ago I started having hypog spells , I now have to eat every 2 hrs or I start to bottom again. My stomach is so miserable. sometimes I hurt on both sides of my ribcage. I can feel it working. 2yrs ago he sent me in for the sugar drink & told me i was prediabetic. They had to stop the test on me because when I drank the stuff I became very sick & then I bottomed out. But now he cannot find the test in my files so he is telling me I'm not prediabetic. I did just go do fasting blood & insullin number test & nurse said it was low but he said it was normal. I have been on hypo diet for week & half but I only weight 111 I cannot afford this. I have begged him to send me to endocrinologist but he refused to untill he ran ct. I had it done yesterday, when it was done the girl took it to the guy to read & said if he seen anything they would be calling. That if i did'nt hear anything that no news yesterday was good news. 2 yrs ago I could eat 1 piece of candy & skyrocket to 169, but it wouldcome down. Is this considered prediabetes or what? PLEASE any input will help! I don't know what to do. I know this is strange but my feet are sweating all the time, my hair is falling out & I feel like I'm dying!

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 6/20/2009 9:15 AM (GMT -6)   
I am sorry to hear this. I don't know anything about Prediabetic. Will it be possible if you can change your PCP or get a second opinion? It may be beneficial. I am surprised that your doc dare to talk you out of seeing a rheumy while you have lupus.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; pregablin 75 mg

Regular Member

Date Joined Jun 2009
Total Posts : 36
   Posted 6/20/2009 9:36 AM (GMT -6)   
I'm sure I will be talking to him monday if he has no answers for me I'm DONE with him.

Veteran Member

Date Joined Jun 2008
Total Posts : 675
   Posted 6/20/2009 1:02 PM (GMT -6)   

It really does sound like you need a new doc for sure,  and a referral to a rheumatologist.  Perhaps you could insist on a referral from your current doc before moving on, since it takes awhile to get into one.  I can only tell you, after recently seeing my rheumy, that she said it was not uncommon for diabetes to develop "later on" with Lupus and other AI disorders (we were talking about how much I craved sugar and was putting on weight) and that I needed to be proactive about really watching it now. 

What really stands out in your post is that you are feeling miserable, with a dx of Lupus, and  your doctor is not listening or responding appropriately.   You need to see a rheumatologist, who may well refer you to an endocrinologist also.  And, in my opinion, you should be called with the test results either way.  "No news is good news" is much too lax a system, and if I were you, I would insist on being called.  You are also fully within your rights to request of copy of all labwork.  I like my doctors and I still do this.  And if a doctor balked at the request I would be no longer be his/her patient.

I really hope you can get some answers - I stayed with a doctor much like yours sounds for FAR too long, and I know it's hard to know where to go from there - especially if you've been with him for awhile, but it's so important to follow what your body/mind are telling you and actively seek the care and answers you need. 

Good luck - and please let us know how things go.



diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 6/22/2009 9:02 PM (GMT -6)   
I also have hyperinsulinemia aka "prediabetes" aka "metabolic syndrome x" and I know what you are going through. My sugar goes low and high and it is awful. It is hard to maintain by diet alone.  Do you have copies of your blood work, especially your liver enzymes? Have they diagnosed you with "fatty liver" aka "Non-alcoholic fatty liver disease" or "diabetic liver"?  They can treat your prediabetes, if you find a doctor willing, but they need to check you out.  If your liver is affected (they can tell if you have fatty liver from a liver ultrasound, very non-invasive, just lke the pregnancy ultrasound only they look at your liver).  Anyway, if your liver is affected, you should have at least one appointment with a liver specialist, called a hepatologist, not just a general GI doc because the hepatologists are really really good at dealing with that kindof problem and have the latest information.  Glucophage has saved both me and my father's life.  For people with this liver involved type of diabetes, its the liver causing the problem by not metabolizing the sugars properly and not burning fat.  A fatty liver diet is different than the regular "heart smart" diabetes foundation recommended diet, which is being attacked vigorously by diabetics because in some cases it does more harm than good. If you do have liver problems, a hepatologist can recommend a proper diet for you specifically, Atkins and South Beach were recommended for me by mine with a moderate fat intake,not low fat.  I became ill on a low fat "heartsmart" diet. 
But the pills for diabetes were what really straightened out my blood sugar, I am an even 100 now, 120 if I eat bad stuff, and I am extremely sensitive to small swings in my blood sugar numbers either way. If I get under 80 or over 120, I feel it.  If you don't have a blood sugar test kit, I strongly urge you to get one. Personally, I think everyone should have one in their first aid kit, especially if you are overweight, on a special diet or are chronically ill.  They are cheap now, mine was 18 bucks and if you get a prescription for it, you shoudn't have to pay at all.
Only certain diabetic medications work for the type of liver involved diabetes that I have, metformin(glucophage) and another one I can't remember.  Anyway, I was decompensating from liver disease (dying) and getting all kinds of other problems until I started my pills. It literally saved my life and I had to see a fancy hepatologist at a famous gi center to get put on it. Since then,my liver enzymes are low normal, my liver disease progression has halted, the inflammation has stoppped, and my ability to tolerate meds is a little better. All this from metformin.  ALso, my high blood pressure went down due to the inflammation of the liver stopping.  Its important toknow if you have fatty liver (which has nothing to do with your weight or body fat I was105 when I first got it) because the wrong meds can make you worse.
Clinical trials for metformin for prediabetic fatty liver should be complete, docs have known about it for about twenty years because my dads been on it that long.
The onset of my "genetically inclined" fatty liver/prediabetes was due to autoimmune endocrine (thyroid and others) disease, so keeping this under control helps me alot. Its something that runs along with diabetes.  So you may want to get that stuff checked. I may have goten it anyway, but maybe later in life.
I hope this helps.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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