Urgent -- I Need Your Help

[jenvan]

As if the latent TB weren't enough . . . . .

Prior to Ashley getting married, she started developing nausea and vomiting - quite severe. We all knew (or thought) that it was due to the BCP's they were trying . . . (No, she's not pregnant -- should have prefaced that!)

However -- the doctor's office called her today and said that she was ineligible to take the INH due to her labwork. They said that the doctor wants to talk with her about it, and that she (the doctor) will call later today. They did not specify WHAT it was, but alluded to her liver panel . . . . . My daughter doesn't drink -- and the only thing that I DO know that she has had wrong was an abscess of her gallbladder because of a botched Belly Ring that she (we) had done on her 16th birthday. Her liver function panels have been normal since then, though . . . .

I am scared and frustrated. I am going to ask my daughter if she will sign for the physician to speak with me directly -- that way I can get some better information and ask a few additional questions. I am not saying that my daughter isn't capable or intelligent, it is just that she is only 20, and I don't know that she knows to ask the questions that need to be asked. Any suggestions?????????????

Lynne-

Wow, I missed all this over the weekend! Wow wow... Will be lifting up Ash tonight. And now this other mysterious news? Prayers of sanity and courage and trust for you right now. Call if you need to...

[tiredofdoctors]

Ashley called -- said that she had signed for me to be able to access records. The nurse couldn't find it, but gave me some "non-information"!! She said that, if a patient has "elevated liver enzymes" that they couldn't go on the INH . . . I said, "hers are elevated????" She meekly said, "slightly . . . that's all I can say." She told me that the chart was marked that Ashley needed to COME IN to see the doctor, NOT talk to her on the telephone . . . So I called Ash, told her that she needed to call to make an appointment.

In the meantime, my mother & dad (think "sung" HAVE COME TO SAVE THE DAAAAAYYYYYY!!!!!!!) have offered to pay for her to see her pulmonologist here (she has the medical plan only at U of K). She and Mark are on their way in as we speak . . . I'm kind of hacked off at one of the girls at the UK med center . . . Ashley called to get her records, said she was going to the pulmonologist. The girl said, "You're going to a pulmonologist just because you tested positive for TB?????" I'm thinking, "Well, considering that just a year and 1/2 ago he was debating on whether he was going to put her on a ventilator because of her asthma, I don't think it's such a BAD idea." I'm still debating on whether I'm going to call and complain. Ashley said, "Mom. She's a bitter receptionist who makes five dollars and fifty cents an hour. What do you expect? Medical knowledge?" Good point.

Given that Ashley has had the same medical difficulties growing up that I had, I am going to suggest to her that she ask the doctor at U of K to run the entire Celiac panel. If I talk to her in a manner that is not "everyone has Celiac", but that she may have the gene for it, she may "hear" it . . . it's a stretch, that's all I'm saying!! My SISTER is the one that's probably going to blow it for me, I think. She's the big skeptic in the family. I think she still believes that I have "conversion disorder"!!!!!!!

Ashley's values were as follows: ASP(T?) Normal 18 - 43 Value: 73

ALP Normal 11 - 35 Value: 76

She doesn't take tylenol, is NOT a drinker (she and her husband are tee-totalers -- they didn't even have a champagne toast at their wedding -- sparkling cider), the only thing that I can POSSIBLY attribute it to is the long-term vomiting she had when they were trying the different BCP's.

So, now, I'm even more scared and even more nervous. This parenthood thing. I'm telling ya' -- there are probably 500 books published about the first year of your child's life. NO ONE has published a book about when they're grown and you're worried sick about them . . . . . . . sheesh.

[AndreaB]

Ashley's values were as follows: ASP(T?) Normal 18 - 43 Value: 73

ALP Normal 11 - 35 Value: 76

So, now, I'm even more scared and even more nervous. This parenthood thing. I'm telling ya' -- there are probably 500 books published about the first year of your child's life. NO ONE has published a book about when they're grown and you're worried sick about them . . . . . . . sheesh.

Lynne,

That would be AST and ALT. I don't know what mine were so I can't help there. If they follow what they did with me, they will do another blood draw to check for hepatitis. If that's ruled out then she REALLY, REALLY needs to be tested for celiac. As I pointed out above, I was told that I had fatty liver. Maybe, maybe not. I did test positive through enterolab though so I'm thinking it was celiac.

Mine are still young so I haven't been there. I do have older stepsons though (15-24yrs).

[Jestgar]

Hi Lynne,

I'm just guessing at this, but I think they are super careful about who they give INH to because it is so hard on the liver. There are other drug regimens that are not hepatotoxic. If Ashley and her doctors decide that she really wants to be treated and they don't want to wait for her liver function tests to come down, there are other options.

Try not to be scared, instead be glad that they are being so cautious.

J

Open Original Shared Link

[tiredofdoctors]

Thanks, Jestgar. It is pretty scary. I am glad that the doctors are being cautious . .. the last thing she needs to develop is liver failure. I feel sure that they are going to do a hepatitis panel on her when she gets back to U of K. That is where her health insurance is covered. I AM glad that she is going to see her pulmonologist, however. With all the lung difficulties she has had -- she gets pneumonia at the drop of a hat -- I would like him to know everything that is going on.

I saw her tonight -- she is RAIL thin . . . I am absolutely astonished that she is so tiny. She struggled with bulimia 7 years ago, and was fully recovered within a year. I've asked both her and her husband if she is doing that again -- she insists that she is not. Her husband talked about the amount of food that she eats -- and it is normal. I asked her about being tested for Celiac . . . . she said that she could NEVER be tested for that -- she loves spaghetti too much!!! Of course, she was joking, and I feel pretty secure that she's going to have that done when she gets back to U of K.

Will know tomorrow after her visit to the pulmonologist . . . . in the meantime, thank you all again . . .

xoxoxoxox

Lynne

[burdee]

Lynne:

I'm sorry I joined this thread so late ... but I tested positive for TB on every TB test I took until I just stopped taking those. During my 20s one doc wanted to give me meds to kill off the TB bacteria, but I declined because I react badly to drugs (I'm the 1% who gets all the bad side effects). However I never developed an active case of TB, my lungs were healthy despite smoking for 10 years, and I never showed developed any symptoms. I know I was exposed to TB by my aunt who spent time in a 'TB sanitarium' back before they developed the TB treatment drugs. Also my maternal grandmother died of TB when my mom and aunt were very young. So my mom could have passed the TB virus onto me. Whatever happened, the 'spectre' of developing TB made me quit smoking after 10 years and try to eat a healthy diet despite ongoing indigestion and undiagnosed/misdiagnosed celiac symptoms. I may STILL test positive for TB, but I'm healthier at age 59 than I've been in years after learning that I have celiac and abstaining from 5 foods to which I have allergies/intolerances.

BURDEE

[tiredofdoctors]

Now we're doing the "will she / won't she" dance with regard to taking the meds. The pulmonologist says the liver enzymes have to be three times normal limit . . . . allergist says 2 times normal limit before declining to administer INH. One more liver function panel . . . . then we'll see. She's about as tired of this as it gets . . . . . I think she just wants there to be a decision made -- one way or the other -- and be done with it.

We'll see tomorrow . . . . . . .

[ravenwoodglass]

Now we're doing the "will she / won't she" dance with regard to taking the meds. The pulmonologist says the liver enzymes have to be three times normal limit . . . . allergist says 2 times normal limit before declining to administer INH. One more liver function panel . . . . then we'll see. She's about as tired of this as it gets . . . . . I think she just wants there to be a decision made -- one way or the other -- and be done with it.

We'll see tomorrow . . . . . . .

Lynne, Just wanted you to know that you both are still in my thoughts and prayers. The liver enzyme issue has me concerned and I hope they figure everything out. I do hope she is going to consider the possibility of her having a gluten issue and addresses it. Undiagnosed celiac can do some awful things to our organs long before the typical GI issues appear. Although it could also be totally unrelated to anything involving celiac but my families history has me perhaps a bit overconcerned. I am thinking of you and hope things turn out well today.

[tiredofdoctors]

I haven't talked with her today . . . I REALLY hope that she will consider having the bloodwork done for Celiac. With me having the antigliadin issues, particularly -- I didn't know that I had the trouble until I was bumping into walls and falling all the time. She has always had a "finicky" stomach. I feel relatively secure that my mom is Celiac . . . has 99.9% of the signs/symptoms, but after having some really bad experiences with MD's, won't go to any other specialists. Of course, I have to soft-pedal it . . . otherwise I'll be accused of being like someone who has just quit smoking, and tells everyone that they have to quit as well. (That's my family's favorite analogy for someone who tries to convince people that they need to do something!) So, I'm trying to "eek" it into my daughter's head that perhaps the nausea, vomiting, and diarrhea is Celiac, particularly given MY ancestry and her fathers . . . . VERY European.

We should find out lab values tomorrow . . . or actually TODAY, given the time! Hopefully we'll have some more answers. I would like to go to Lexington to go to a doctor's appointment with her . . . I'd like to discuss with the MD, PA, whatever . . . . the possibility of Celiac. She said that her thyroid levels were "fine" .... she has been hypothyroid as a younger child, and the pediatrician didn't tell us. Her levels may be "fine", but I want to know if she has ANTIBODIES . . . .

Starting a totally new venture, it appears . . . not only dealing now with the TB issue, but also with potential underlying issues -- and possibly facing a LOT of resistance. Wish me luck!!!!

xoxoxox

Lynne

[ravenwoodglass]

I haven't talked with her today . . . I REALLY hope that she will consider having the bloodwork done for Celiac. With me having the antigliadin issues, particularly -- I didn't know that I had the trouble until I was bumping into walls and falling all the time. She has always had a "finicky" stomach. I feel relatively secure that my mom is Celiac . . . has 99.9% of the signs/symptoms, but after having some really bad experiences with MD's, won't go to any other specialists. Of course, I have to soft-pedal it . . . otherwise I'll be accused of being like someone who has just quit smoking, and tells everyone that they have to quit as well. (That's my family's favorite analogy for someone who tries to convince people that they need to do something!) So, I'm trying to "eek" it into my daughter's head that perhaps the nausea, vomiting, and diarrhea is Celiac, particularly given MY ancestry and her fathers . . . . VERY European.

We should find out lab values tomorrow . . . or actually TODAY, given the time! Hopefully we'll have some more answers. I would like to go to Lexington to go to a doctor's appointment with her . . . I'd like to discuss with the MD, PA, whatever . . . . the possibility of Celiac. She said that her thyroid levels were "fine" .... she has been hypothyroid as a younger child, and the pediatrician didn't tell us. Her levels may be "fine", but I want to know if she has ANTIBODIES . . . .

Starting a totally new venture, it appears . . . not only dealing now with the TB issue, but also with potential underlying issues -- and possibly facing a LOT of resistance. Wish me luck!!!!

xoxoxox

Lynne

Lynne, I understand your need to 'soft-pedal' the celiac thing, but if they counter with the smoking analogy you should counter with "but smoking isn't genetic!!!!!" IMHO the celiac genes are passed on much, much more frequently than Doctors commonly think. I insisted on both of my children being tested right away, got pooh-poohed by both the doctors and the children especially since one of them has a natural father who was pure Castillian Spanish and the others' natural Dad was Scot and Norwegian. Well they got tired of my nagging and decided to humor me and guess what, both showed up in blood work, I don't. It took 3 more years of gentle nagging for my DH to get tested, the GI figured he better humor me again. He also came back positive and has seen relief from things he never knew were even remotely celiac related. You need to keep pushing, hard as it may be.

Many of us have had liver enzyme problems before diagnosis and the effects of celiac related liver problems can be very serious. I am not of course saying she for sure and for certain has liver problems that are definately linked to the celiac but it would be prudent of her doctors to at least make sure to the best of their ability. Please don't let up on the issue of testing for the rest of the family becasue they might consider you to be a nag or overreacting, celiac disease is genetic, it is not like smoking or alcoholism and there is no comparing the nagging that an ex-smoker or drinker might do. I'm not going to go into the way that celiac related liver problems devestated my family, I don't want to worry you unnneccessarily if that is not the problem but I can not stress enough the strong need to address this with her.

I realize this post is far off the original TB issue, but perhaps the latent TB was a good thing if it caused the doctors to check those liver functions. I am still thinking of you and hoping that everything works out OK. If your not a cyber hugger please forgive but (((((((hugs))))))) and prayers are coming your way.