Chronic Fatigue syndrome & Type 1 diabetes.

Hi, Hope someone can help. Had type 1 diabetes 25 yrs from aged 13, Chronic fatigue last 15 years. Last few years food probs, intolerances and unstable blood sugars. Unstable sugars big prob at moment - told `leaky gut` side affect but dont know how to treat. Always try to be positive especially with new baby girl arrived but this is really getting me down. Any advice? specialists? really appreciated. Thanks, Chris

[JDRF-VOL-SG]

I am a type 1 diabetic, diagnosed at about the same age as you. I happen to have an identical twin who also was discovered to have this health problem after it was diagnosed in me. For YEARS, she complained of fatigue and she also had stomach problems. Her doctors tested her for chronic fatigue syndrome and for celiac disease and all the tests (other tests were run, also) came back negative. Finally, she asked her doctor to test her adrenal gland function. Her cortisol numbers seemed to be normal most of the time, but her doctor tested her in much the same way as a glucose tolerance test: an initial blood draw is done to determine the resting adrenal function, and then the person is injected with something that is supposed to stimulate them to produce adrenalin. In her case, her levels actually dropped instead of rising. Her adrenal glands have been damaged by her immune system just as the pancreas has. She was put on prednisone for a year and when it appeared that her adrenal glands are now beginning to work on their own some, she is slowly weaning off of the prednisone now. Addison's Disease was the first diagnosis, but now it seems that her situation is more of an adrenal fatigue situation rather than complete failure of the adrenals.

So to make a long story more to the point, you may want to ask your doctor to check adrenal function by doing this kind of test. My sister had to suffer for 20 years before this test was finally run, and her quality of life was terrible. Unstable sugars, leaky gut, and fatigue are all symptoms of low cortisol levels.

The other things that I would suggest you have checked if they have not already been checked are thyroid function (although your symptoms are not classic thyroid symptoms, I don't think) and maybe you should be checked for Celiac Disease. All of these problems seem to be related to autoimmune system problems and are more common among type 1 diabetics than among the average population.

And one last thought... my sister seems to react with all of the symptoms you mention when allergens are present. I had never heard of these symptoms as being symptoms of allergies, but maybe this is partly because her adrenals aren't really doing a good job. If you have allergies or if you notice more of a problem when pollen levels are high, this might be something else to look into. She can notice a rapid rise in glucose levels when she goes out to ride her horses, but when she comes back in and showers and stays indoors, rapid drops happen.

I do wish you the best in finding a root cause for this fatigue.

[ukchris111]

Thank you so much for time taken and insight into my current chronic fatigue/diabetes battle. Your explanation and experience of your twin sisters similar problem helped me feel in part that there is some rational explanation into whats going on. I will look into all issues you mention. Over the years i have been used to feeling not that great but lately everything has been getting really tough with little or no medical support or understanding into why. My diabetes specialist sees me once a year and looks at my b/glucose results assumes careless control. You begin to question your own sanity at times but fortunately i have good people around me who believe in me.I was relieved to be honest after reading your reply as far was aware i was only sufferer (or so it felt) of type 1 diabetes and cfs. The two conditions dont go well together and affects so many areas.
I would be interested in talking further with yourself or your sister if you/her felt able? Unsure where you are based?

Thanks again

Chris

[JDRF-VOL-SG]

We are not allowed to post personal e-mail addresses here, but I would be happy to correspond with you if you go through the Juvenile Diabetes Research Foundation's Online Diabetes Support Team (ODST). Your symptoms DO sound an awful lot like what my sister dealt with. It took 20 years of her complaining of awful fatigue and being tested for everything BUT what was really wrong with her to get a diagnosis. No, it is NOT the norm for type 1 diabetic folks to be tired all the time if glucose levels are under control. And my sis says that hers were really unstable when her adrenal glands weren't working, no matter what she did.

So please go to the Juvenile Diabetes Research Foundation (JDRF) website at www.jrdf.org -- then click on the link on the left side of the page for the Online Diabetes Support Team (ODST). This will take you to a window where you can ask to be put in touch with me... Tell them that you found me on the MedHelp Forum. I will contact them and ask them to send your request to me. Then we can discuss this with more details than we can in a generic forum, and if my sister OK's it (I suspect she will), I can put you directly in touch with her. But DO get those tests run. Not just a generic cortisol level, but have them do a cortisol stress test as I described. In her case, her cortisol levels seemed to be OK when tested with usual blood tests, and it was only when they tried the stress test that they discovered that her adrenal glands weren't able to produce cortisol when she was stressed. I will tell the JDRF folks that if a Chris contacts them with a request about chronic fatigue, to send it to me.

[adamb170]

I have had type 1 diabetes for 10 years for at least 3 years have been suffering cfs type symptems,swollen glands, headache,burning eyes sensation and generally feeling awful from head to toe.I was also found to have low cortisol but when i had the synachtathan?(i know its spelt wrong)test my stress response was normal.Also i had low testosterone which has now been rectified,non of this has helped.I have been off work for 8 months trying to get a proper diagnoses and have now had every test imaginable.I have been deemed able to work and am entitled to no benifits at all but i cant work either,can any body help.

[JCP22]

I know this is a few years later. I've been dealing with this all for the past 13 years and it's frustrating. CFS is a syndrome and in order to heal, you must attack all of your symptoms at the same time as well as avoid all foods you might be allergic to. I've overdone it myself and the more food issues you have, the more you will get. My doc has me on ketotyfin which is an antihistamine typically for asthma but prescribed to reduce inflammation in my intestines in order to give my intestines a chance to calm down and get rid of some of the reactive foods. Read "From Fatigue to Fantastic," "The Core Balance Diet," and "Edgework: Exploring The Psychology of Disease." You must work on healing on all levels. Best of luck. Also, keep your stress down as much as possible (easier said than done). Also, most doctors treat you like a hypochondriac but your illness is real-they just have no clue how to solve it. Naturopaths have more answers in this territory.

[Gina1974isMySister]

I have had Type 1 for the past 33 years. I am 35 now and I have to tell you that I have suffered from "chronic fatigue". I just never knew there could be an answer. I have felt fatigued for years and I couldn't figure out why. My blood sugars run poorly no matter how hard I try to keep them under control and I often get frustrated when my Doctor feels I'm not trying to take care of my self. Thank you so much for that information! Tomorrow morning I will be making a Doctors appointment and bringing this to her attention. Thank you so much!!!

[UKBrian]

Chris,

I am also Type-1 diabetic, also suffer from CFS/ME and am also UK based.  I am also having problems, quite severe ones, with blood sugar control despite meticulous management.

Prednisone does work on the adrenal glands, but It affects another hormone called Cortisol not adrenaline.  

Since you are UK based you will need to be aware that the standard of testing done into adrenal function in the UK is very poor (it is in most places).  The standard tests that will be done as part of your 'full blood count' will only report as low, or high if they are life threatening.

CFS can mess up Cortisol is several ways:  raise it all the time, lower it all the time, make it inconsistent.

The inconsistency is the one can causes the chaos.  Cortisol is produced in varying amounts through depending upon time of day, and demands on your body.  Two things can happen when a peak amount of Cortisol is required.  Either the body can be unable to produce that peak, or it can produce the peak but exhaust the adrenal glands in the process causing a deficit thereafter.  This unstable response to demand can have serious ramifications for blood sugar control.

I would very much like to know whether you have been successful getting help and it would be a relief to be able to 'compare notes' with somebody.

Brian