I would appreciate comments from anybody with knowledge about adult onset (or adult diagnosed) CF. I'm a 37 year old male. For a full year now I've had several symptoms that have yet to have a specific diagnosis. A year ago I went to a doctor with both abdominal pain and chest discomfort/pain. It was the first time I had been to him and was confronted with one of those forms to list all diseases/symptoms that one suffers from. On that form I included many things which were either intermittent or ongoing problems such as sinusitis, fatigue, sleep problems and digestive dysfunction. I guess I appear too healthy because he was very dismissive and said he couldn't think of a single thing that might lead to such a wide variety of symptoms and then subjected me to a psychological questionnaire. After this wonderful encounter I ignored the symptoms for about 6 months before the feelings of chest pain got worse. Using a new doctor I've now had chest X-Ray, Chest CT with some sort of injection, TB test, heart stress test and asthma evaluation. All of these were negative or normal. Every time I have a day where the pain is most noticeable I tend to do a bit of poking around the internet to see if I can find some leads. This time I ran across references to adult onset CF. So here's the question. With the below listed symptoms/history is it possible that I could have a variant of CF that's gone undiagnosed to age 37? and if so is there a doctor in S. Cal that might have experience with adult onset CF, such that they wouldn't simply write hypochondriac in my chart?1 year history of intermittent chest discomfort/pain. Slight pain usually occurs with laughing, yawning, coughing or deep breaths. Sometimes I tend to cough but rarely is anything coughed up. In general breathing seems a bit more difficult than in the past.I have fairly bad sinusitis with congestion and post nasal drip. Pulmonologist that ruled out asthma seems to think chest pain is secondary symptom of sinus problems. I went to an allergist years ago that said the only thing I'm allergic to is dust mites. My sinusitis problems seem to occur even when in environments presumably relatively free of dust mites.I have had surgery for nasal polyps 6-8 years ago. I understand polyps are potentially correlated with CF.I had a gallstone at age 25. This is very rare in skinny, young men which is why it went misdiagnosed for a full year. I now understand that this is also correlated with CF.I have had intermittent digestive problems for a number of years. Also, for a long time I have noticed that stools often are covered with thick mucus.I have had lower abdominal pain that is hard to pinpoint and doesn't seem to feel like intestinal pain/cramping.I've had several urinary tract infections (rare in guys my age) and was told I had a slightly enlarged prostate by urologist.I have Hashimoto's syndrome thyroid disease. I take synthroid and my levels are normal.Despite having drug controlled normal thyroid levels, I have now started to feel fatigued on a regular basis.Sometimes I seem to be heat sensitive, feeling hotter and sweating more than would seem appropriate for ambient temperature.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
CF diagnosis at age 37?
- Thread starter pjduncan
- Start date
AbsintheSorrow
New member
Well they pretty much knew I had CF at 2 days old, and was officially diagnosed at 6 months (they couldn't do sweat testing in under 6 month olds back in 1984). But let's see. I've heard before about people getting diagnosed in their 20s and 30s. It's much rare-r, and almost certainly means you have a much less severe case (which is always good!), but it happens. Nasal polyps can be unrelated to CFers, but often CFers do get them. I had them removed when I was 5 years old. Post nasal drip is also a common thing. I have that a lot. Chest pain that goes along with laughing and deep breathing also sounds familiar. Being hotter than the temperature would normally suggest is also common. I usually tire out much faster than other people in heat because it beats on me harder. I live in Connecticut, so don't know of a ny doctors in Cali, but what you really need in order to find out, is get a sweat test AND genetic blood testing done. Since you're so mild, it seems, the sweat test may be borderline, and blah blah. It happens a lot that people get false negatives, and then go without proper treatment for years and years. One thing that needs to be stressed for your testing, is that it needs to be done at a CYSTIC FIBROSIS CENTER. Any other doctors or technicians never know enough about it, and you'd be likely to get a false negative. You must must MUST get this testing done at a CF Center, that's very important. So keep us posted on what happens. I will hope that you come out negative, but only if it's a true negative. Either way, if you get a positive.... You're 37 and seem to be doing fine, omitting some minor discomfort, so either way, you're probably looking real good. Probably looking at a mostly regular life, so don't sweat it too hard. <img src="i/expressions/rose.gif" border="0">
AbsintheSorrow
New member
One other thing I'd ask..... do you have any children? Or have you tried with no luck? Because CF men often are sterile. So if you've tried and failed, that might also be a little clue. But let us know what happens.
Thanks for the comments.No I haven't tried to have kids.From what little I've found on the net about the possibility of adult onset CF it seems that the sweat test can often show borderline or negative and that the gene variants with mild adult onset are sometimes not the ones that show up in tests. That's why I'm thinking it would be all too easy for a doctor to just dismiss this unless it's someone that has actually seen (or at least read the research on) late life CF diagnosis.I know I'm likely barking up a dead end tree... to mix metaphores... but I know there is something wrong.Thanks for the reply. Best wishes in your dealings with CF. I'll have to admit, if nothing else a positive outcome of this is that I am much more educated about CF than before. It's hard for me to imagine having grown up with all the associated problems.
I remember hearing about cases where people have had a relatively normal childhood but began to developed symptoms of CF in their 30's. I learned about this in my genetics class. When I heard this I've oftened wondered if that maybe I was in that category having what seems to be a lot of similar symptoms. I'm a 35 yr old male, I don't smoke or have asthma but I'm constanly having to clear my throat. I usually can't carry on a decent conversation because the mucous seems to "stick" to my vocal chords and I can't talk too long without constantly having to clearing my throat. When its really bad I feel a wheezy congestion in my upper chest. I had this for several years now but it's really more of a nuisance than a major health concern. A doctor told me it was just post nasal drip going back into my throat, but that didn't sound right.Then I thought about some of the other symptoms, I've been extremely underweight my whole life, and had a long history of stomach/digestive/malabsorption problems. Since I couldn't digest heavy, creamy or fatty foods I was a scrawnly little kid growing up and I was years behind physically all my classmates. Even in my late 20's I lookes like a skinny teenager, once someone suggested to me that I was anorexic. I know vitamin malabsorption is a sign of CF, as well as delayed growth. Vitamin K deficencies seems to be common with CF. I've had oral surgery a couple of times and I had an awfull time trying to stop the bleeding after surgery, before I learned vitamin K is essential for blood clotting. I've had many signs of other general vitamin deficencies, particularly B vitamins, I get "Geographic tongue" from time to time and I get a little "hypoglycemic" if I eat too much sugary foods those are both related to B vitamins but I'm not sure if that's a problem common to CF. Sometimes I get this tight "twiching" sensation, not sure what that's all about, but I usually get that if I eat too much starchy foods like potatoes. That might be related to a magnesium deficiency??. I try to read as much as I can to stay on top of my health but I never knew why I was so prone to so many nutritional deficiencies and fatigue in the first place. When I started taking a lot of vitamin supplements, I noticed a big improvement just in my general well being. Then I started taking digestive enzymes with the vitamin and mineral supplements and I continued to improve, I even started to put on some weight. I still get a little discouraged sometimes but I try to be optimistic and I learn as much as I can, when I'm not too tired. For me one of the most important things is to avoid stress and anxiety, since I've done that my stomach cramps and malabsorption has been much less frequent, but I still have that cough problem. I not sure if I should get tested for CF, I have noticed that my sweat seems a little "salient" but I thought that was normal.
I have a daughter w/CFwho is 20 yrs. old. She has been going to Children's Hospital in LA since she was diagnosed at 8 months. We are starting to find out about the adult CF Center at USC Medical Center. That's probably the best place to start since you are in Southern California. If you are further south than Los Angeles, contact Children's Hospital of Orange Co. and find out where their adult center is located. Good Luck...
AbsintheSorrow
New member
You're right though, with such a mild case, your sweat tests are very liable to come out negative. Try for a genetic blood test, that may be more helpful.
I would stress what Emily has stressed here also. Be sure to have your testing done at a CF Center. If you have it done anywhere esle where they don't know how to read the tests, you get inaccurate answers or a misread diagnosis.I see EMily here more often than at home lately...are you feeling any better since on the Cipro or are we moving on to IV therapy?
AbsintheSorrow
New member
Don't know yet the Cipro has only been for 2 or 3 days. So far no change.
I was 30 when I was finally diagnost. They said I had allergies since I was 17. and I would grow out of my symptoms. I had to demand being sent to a pulmonologist. It seemed I was going to the dr approx every 6 weeks. I only had relief of symptoms after antibiotic treatments. As soon as I sat in the chair and told him my chest symptoms and nasal symptoms, he new right away. I was tested the next week 3x and each test was positive (sweat chloride test) and I too was told as I went to each appt. for my test "you are too old to have cf", as if to say it was a waste of time. Then after each test they would look at me as if I had 2 heads. Because it was positive. After I was told , I was givin literature and told I would have a breathing test each year but other than that I had no support. Noone to call. Noone to say "that's from your cf." Untill I heard of cf centers and asked for almost a year to go to one. I have an HMO. So please demand your dr to listen or send you to a speicalist. Also go to a cf center if you do have it they are wonderful. I live in Mi. and go to a cf center in Ann Arbor. Eva
PJ, I was tested at John Hoplkins Hospital in Baltimore Maryland in 1983 at the age of 36. I was positive for CF along with two of my sisters who were 4 and 8 years older than I was. Three other sisters tested negative. Prior to this diagnosis I was always treated for upper respitorary infections and pneumonia. I frequently spit up blood when I participated in sports. I have always been a cougher that produced sputum. When my family doctor found out about the diagnosis he didn't believe it was accurate. Until I started going to CF Centers (NIH in Bethesda Maryland and John Hopkins in Baltimore Maryland) I was never treated properly. I'm now 57 years old and am doing quite well. I have more hospitalizations now but the IV antibiotics I receive are the best available. I take enzymes to reduce stomach problems and bowl problems. They are wonderful and help reduce stomach pain. Asthma is another factor I have to deal with, however I take 5 different medicines for this and I use a nebulizer. I also have a compressor and vest that simulates chest physical therapy. I get frequent sinus infections and suffer from sleep apenea. So what I'm trying to tell you is that all my life I have had problems with my lungs. Because of my age CF was never considered. It was my sister Margaret who contacted John Hopkins because she heard of a program looking for people with the kind of symptons we had. If you really think that you have CF please contact a CF Care Center and have the salt test administered. I was told that the test is 100% accurate.
Hi there,
I know no one wants to hear bad news but i would rather know than keep guessing if its this thing or that thing. I was diagnosed at 7 months of age. I am now close to 30. Get a sweat test or a genetic blood test so you can have peace of mind. Best of luck and keep us informed. <img src="i/expressions/face-icon-small-smile.gif" border="0">
I know no one wants to hear bad news but i would rather know than keep guessing if its this thing or that thing. I was diagnosed at 7 months of age. I am now close to 30. Get a sweat test or a genetic blood test so you can have peace of mind. Best of luck and keep us informed. <img src="i/expressions/face-icon-small-smile.gif" border="0">
hi pjduncan i was diagnosed at 3 weeks old it started with me refusing my feed and i just slept all the time the nurse said to my mum give her warm water i still did not except this they said it was a bowel blockage and they had got rid of it and was alwwed home . when my mum got me home i was being sick constantly so my mum and dad rushed me to hospital . they did all sorts of tests to find out what was wrong and then they did a sweat test and found out i had cystic fibrosis just one simple test i am now 20 and i must say some of your syptoms sound similar to cf so i think you should do your self a favour and get a sweat test to find out once and for all if you have it the doctors should take you more seriously to best wishes from jo<img src="i/expressions/rose.gif" border="0">