Time period from CFRD diagnosis to seeing Endo

[SaraNoH]

Hey all, the recent thread from RachElizza promps this one, as well as some personal stuff.

How long was it between when your bloodwork came back saying "CFRD" etc etc and you seeing an Endo for treatment? (p.s. I honestly didn't know that CF clinics [or at least mine] don't treat/"deal with" CFRD. Hey, that's just what they told me.)

My last CF clinic appointment was in early February. Bloodwork came back indicating early/pre/whatever CFRD, and I made an appointment with the Endo they suggested. My appointment with said Endo (a Dr. Stump, which I find to be very ironic) is in mid-July, the soonest they could see me. I was surprised because 1. my clinic is super paranoid about CFRD management/early detection etc and are in cahoots with this Dr, and 2. Though I'm NOT symptomatic at all, isn't this something that needs to be checked out, like pronto? Or not? I dunno! Even for normal folks...

So, 4 months waiting period? Is that normal, way drawn out, or acceptable? Just wondering what you've all seen/experienced.



And I will rant for 2.5 seconds.
When I was told my bloodwork came back wonky this was the conversation:
Dr: So you're sugars are indicating you're on the path to CFRD. You'll need to make an appointment with an Endocrinologist.
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Me: Ooooook then, do I need a referral, and can you write it or does a PCP need to do that? Who should I see, how soon do we need this to be taken care of, do you guys co-treat this in clinic as well.....?
Dr: Oh yeah, we can get you that info.

Thanks yeah, that'd be great. Next it'll be, "You're culturing some really nasty stuff. Have fun with it!"

 

[Gorf]

Mine came back when I went in for a hospital stay, being sick elevates the sugars anyhow(Did they tell you how high yours was). As I said in another post, they started me in insulin right away(sugar was over 500), got 4 shots the first day. The second day all I changed in my diet was the soda pop I drank a lot of, only had to have 1 morning shot the next day and when I left was put on a pill, no insulin shots where needed. 3 years later I am on insulin again, watching what I ate caused me to lose weight. With insulin I can be a pig and keep my weight up. I hope this answers any questions or at least some. My CF clinic has other doctors come in that treat us for our diabetes. 48 year old male with ddf508.

 

[keefer11]

I think it depends on how high your numbers were. Do you know what your HGBA1C or random glucose test was? My brother was early stages CFRD and just started cutting back on sugar and didn't have to see an Endocronologist for years as he was able to keep his glucose levels somewhat stable.

I was in middle school and peeing/drinking a lot and lost a ton of weight and was hospitalized because of my CFRD. My glucose was about 500 and I got treated immediately. So because I was hospitalized I saw an Endocrinologist immediately.

Are you having any major symptoms of Diabetes? Constantly thirsty, peeing a lot, weight loss? If so, I would get to see an endocronologist sooner!

 

[fcalbano]

you should be under the care of an endocrinologist before the onset of what you are calling cfrd. Really, cfrd is gross pancreatic insufficiency. I was seeing my endo for years prior to needing insulin due to pancreatitis. Only one center out of six had anyone who knew endo, and even then I saw an endo outside the system- and many years later still do.

 

[fcalbano]

you should be under the care of an endocrinologist before the onset of what you are calling cfrd. Really, cfrd is gross pancreatic insufficiency. I was seeing my endo for years prior to needing insulin due to pancreatitis. Only one center out of six had anyone who knew endo, and even then I saw an endo outside the system- and many years later still do. Also, the only accurate determinant of a high glucose is a "fasting glucose". This done in the office and is very simple...

 

[LittleLab4CF]

Cystic Fibrosis Related Diabetes (CFRD) was one of a hundred new terms and acronyms when I was diagnosed at 52. It seems some countries have usurped CFRD to be CF Related Disease? Be it for good or bad my accredited CF clinic was so focused on the pulmonary aspects of CF that my visits were often embarrassing since I was not having the extreme pulmonary problems they are so good at treating. When I was diagnosed with CF, I had four years in a row of multiple hospitalizations (3 - 4/yr.) for pneumonia, generally with meningitis so an air bag specialist was welcome at first. My CF as was my father's is mostly south of the diaphragm to begin with.

My diagnosis of CF was initiated by a pancreatic function (PF) test that pegged the meter for bad. Although a sweat test recommended by my new best friend, Dr. Steven Freedman, was performed, he concluded from the visit, exam and PF test that my pancreas was eating itself rather aggressively, the same process that makes us all CFRD. Pancreatic autodigestion was a term that was pretty descriptive in itself and my pain at that time often felt as if some larger parasites were in my gut, eating a worm's path through my insides. Before I knew the results of my sweat chloride test I had made appointments for National Jewish Health's adult CF clinic and found an endocrinologist through other connections.

It was a LONG time, nearly eight months before my first visit with an endocrinologist, however at the first visit they informed me that I was penciled in for monthly visits here on if needed. As it turned out I wasn't close to CFRD but since I had my valued spot in the queue, I had him do a twelve point checkup on my endocrine system. There is good reason to have an endocrinologist on your calendar whether you are CFRD or not, a CF patient’s endocrine system is being stressed.

Fibrosing or scarring in the liver, pancreas, reproductive organs, and pretty much every duct based organ or system in the body includes every endocrine function I can think of. Insulin and their islet cell factories are just one of host of CF's deadly endocrine targets. Being in condition to make a baby is enough reason to seek out an endocrinologist, even for an adolescent. Sex hormones are put to use by the body to stimulate recovery from illness. Not all CF doctors, including pediatricians, are looking for low hormone levels.

Something that worries me concerning CF is the lack of attention to the endocrine glands of children and adolescents and a possible connection to adult CF patients too plugged up to concieve. Show me a CF patient without a weight problem? Malabsorption isn't the whole of weight problems with CF. In my estimation CF causes the body to burn hot, whether the source is chronic wasting, pain, infection or something unknown, a racing metabolism has hormones behind it.

Endocrinologists are amongst the most schooled doctors alive. Their educations take so much of their lives that they should be entitled to a couple extra decades of health just to offset the enormous commitment to learning everything about everything endocrine and then learning in great depth, the effect the endocrine system has on other organs and systems in the body. Like a CFGI specialist, endocrinologists are rare birds. To seemingly add insult to injury, I have never met a GI specialist that included the endocrine functions of the pancreas and other endocrine functions within the GI specialty. My regular GI doctor and every other GI doctor I have had are strictly exocrine in specialty and treatment. Their concern over the pancreas stops at the opening into the duodenum where the digestive juices are supposedly dumped. Although my GI doctor understands a PF test and can even do them, at best his concern over the digestive juices being produced is confined to the contents of the digestive cocktail.

I get it! As much as I pontificate over my good fortune of seeking out an endocrinologist long before my pancreas was in any danger, my other CF related endocrine issues were handled and I have not kept up my annual appointments. Thanks, I think I’ll make an appointment and hopefully be seen this year.

LL

 

[SaraNoH]

Something that worries me concerning CF is the lack of attention to the endocrine glands of children and adolescents and a possible connection to adult CF patients too plugged up to concieve. Show me a CF patient without a weight problem? Malabsorption isn't the whole of weight problems with CF. In my estimation CF causes the body to burn hot, whether the source is chronic wasting, pain, infection or something unknown, a racing metabolism has hormones behind it.
LL

Lol, I definitely don't have a weight-gaining issue! And I know for a fact there's many users on here that could say the same.

Point aside, my last fasting glucose came back at I think 160 post 2 hrs, so not in the dangerous zone, but not within the norms. My A1C was checked a few years ago with the first CFRD scare and it was between 5-6, don't quite remember, but that was at least 2 years ago and of course they say it "isn't accurate" for CF people.

 

[running4life]

I don't have a weight issue either. I'm at a perfectly normal weight for my height. I have to watch what I eat or will gain like most people without CF.

I was 15 when I was diagnosed - lost tons of weight, fatigue, thirst, frequent urination, all the usual symptoms. Went in for a regular clinic appt and stayed 3 days in the hospital to get my sugar under control. Saw an endo immediately so I know my situation is a bit different.

 

[LittleLab4CF]

My apologies. I did consider a weight problem that could lean toward obesity as a problem but neglected to include it specifically. The root problem either way easily could be endocrine, and I should have been clear. A little weight one way or the other isn't usually serious but low body mass gets serious fast.

The past month topic posts have involved questions by young adult CFers concerning both extremes of body image. Anabolic steroids were discussed with some frightening enthusiasm and the flip side topic of obesity with CF and the added self loathing of having a disease that is hallmarked by thin to emaciated bodies. Although I was a typical transparent super skinny CF kid, graduating high school at 5'11" and 113lbs., in my mid thirties I sported a pot belly and weighed close to 180lbs. Both my height and weight have dropped as I get older and sicker. In all, I have been within the range of "average" all my life so this isn't all that big a deal for me personally. CFers tend to be a cross section of our population in most ways. There are CF saints and CF despicables, doctors, fashion designers, authors and food service workers, but we all have considerable exposure as patients. I am always impressed by the knowledgeable contributors in this forum, especially complex medical protocols and transplant medicine. Medicine hauls out their big guns in treating CF. Double lung transplants, islet cell transplants, G tubes and CFRD that started all this are depenent on cutting edge medicine. Weight management could be one of about twenty endocrine issues CFers could be dealing with in the dark. I hope I didn't offend anyone. It was not my intent.

LL