Hi guys,

I'm over my raging fit and managed to get thru it without breaking a toe this time. Didn't go out and shoot any doctors either. I'm proud of myself. ;)

I thought I'd throw a new thread out and see if I get any bites. I'm not looking forward to going this one alone too but after a search of the boards, I got a feeling that's the way it's going to be. Anybody ever dealt with this before or have any idea what to expect? All the info I've been able to find seems to apply to those who had doctors who actually treated it fairly early and didn't let it ride for 15 years. You read about how this can happen and that can happen if it's not treated and the problem is this and that are now reality. I'm feeling really lost right now.

Helen

Thanks allie. I've been doing a lot of research on it. I've been doing internet medical research on thyroids for 15 years and can zero in on something in a heartbeat. Problem is all these research papers and such always lack one thing and that's the human element. The people who write these things have never been thru it.

This site is allowed: http://www.medscape.com/viewarticle/410658_3 So's this one: http://www.anaesthesiamcq.com/AcidBaseBook/ Pretty technical but really in depth discussions. My pcp feels that, based on the labs, I have what was formerly known as type 3. They did away with that designation and now consider type 3 a subtype of type 1 but actually a mixture of types 1 and 2.

You're a sweetie. I hope things are going a little better for you. I'm still interested in what you found. I have a tendency to try and read everything I can find.

Helen

I read bunches. I could run rings around almost any endo when it comes to the hypothalamic/pituitary/thyroid axis, the role the thyroid plays in metabolism, the various molecular changes that take place at the various levels of each tissue and organ, etc, etc, and I got one big advantage over them, I know how it feels. I kinda play your role on the thyroid board. I know the time and effort involved in reaching out and grabbing someone's hand. Thank you. I appreciate it from the bottom of my heart.

But, I also feel this overwhelming need to talk about it with someone else who knows and can understand. Took me two years following a trail to track down a real live person who's wife has a similar thyroid condition to mine. It's a very rare disorder. He's a compulsive researcher too. We talk on occassion and it helps.

So ifn's y'all don't mind, I'll talk, you listen and perhaps someone, somewhere will come along and I won't feel so alone. RTA not only can cause kidney disease, it can also be a complication of kidney disease. And, then again, it is a kidney disease. This seems like a logical place to start looking. It also looks like I'm going to be dealing with some kidney issues as a result of this now too and it's going to be kinda nice having some experts around to help guide me. This is a whole new world to me.

Oh, I don't have an autoimmune disease. They've pretty much been ruled out over the years. Came to find out I'm IgG deficient instead which also explained a lot of things. RTA (and for that matter, IgG deficiency) can also be a complication of non-autoimmune hyperthyroidism. That, along with the help of some real idiot doctors, I do have.

Yeah, I did but it's nice to know that someone cares. ;) If you reread the posting rules, you'll see that that one would have been allowed without preapproval. The .gov sites are. So are a lot of others. I follow the guidelines to a t. They're actually quite clear and I haven't hadn't a lick of problem posting links. When it hits a grey area, I ask.

I thought it was my imagination at first but it seems to happen every time. Has anyone else experienced increased pain after taking lasix? It's been a daily thing and it's putting quite a damper on my mornings. Speaking of which, what is safe to take for pain? I've been a little afraid to take anything so far but this is getting really old.

Tylenol's the only thing we've got in the house. I'll try it. Thanks.

He's on vacation for two weeks. I've got an appointment for the 18th.

Lasix is starting to punch. I'll go see how well the tylenol works.

Tylenol doesn't work.

Did manage to get a copy of the labs from the receptionist today. Called and told her I'd be in to pick em up. Figured it was worth a shot and it worked. She didn't even question who had told me I could have em just got the chart and made a copy. She's such a sweet girl. :)

Labs so far look like they're confirming the diagnosis. The nurse from hell ordered the wrong urine again. Should have been a 24hr. Instead it was a random cup. Another 3 labs "unable to calculate". One of these days I'm going to pour it on her head. We had a little chat on the phone and I told her I'd been sick long enough and was tired of jerking around with all these errors in the labs and I want the right labs done and results in hand before the pcp returns from his vacation. She agreed to ask him when he calls in. :rolleyes:

I'll take a video. And really, what else is there to do but laugh at it? This gal is absolutely unbelievable. The rest of the staff in the office is great.

The doc writes down what he wants on his notes. Hands me the chart to take down the hall to the lab. The lab tech looks at it. The nurse comes in to confirm what the doc ordered and helps her code it for billing on the computer. It's all done right there in the same office. No lab slips. The jugs are right there too.

Honestly? Horrid. :( But at least I got me a set of labs that says I can feel horrid. They can't ignore it this time.

I wish I could make you feel better too. Wouldn't it be nice if we could go out and save the world? But.......... C'est la vie. We take what's dealt us, pick our butts up, brush em off and move forward.

I'll get my answers. I've got all the resources I need right here at my fingertips. Fingers crossed that I now have a pcp that doesn't look at me as an air-head and seems willing to help me. Now, just gotta figure out a way around this nurse from hell. She's not only an idiot (btw, thanks for nominating her) but she whines when she talks and has to argue about everything. Makes me wanna punch her out.

Oh, raided mummy's medicine cabinet. She had a couple of the tylenol with a kick. Found 5 of em! I'll have to dole em out like treats but it's kinda nice knowing that I got em.

I think I like the term "fire". I'd always thought of it as shear bullheadedness. ;)

It's been a little ruff. Kinda looking forward to getting something done about it. This waiting ain't easy.

Been working on trying to learn as much as I can and finally finding answers to some questions that I've had over the years. Things are starting to make a lot more sense. D*** doctors.

Do have a question though. Somewhere on one of these threads a while back I think I read something about there being such a thing as colic without stones? Just kinda wondering what that was all about cause something sure took me to my knees the other day. Shot all the way from my side to my crotch. Kind of an eye opening experience and made me very thankful that I had raided mummy's medicine cabinet. There were no stones on the abdominal ct that was done at the beginning of june. Is this a little trick I get to look forward to more of?

Got a chance to do the search. Yep, that sounds like it.

Got a call on monday evening from the nurse from hell. The pcp had called in from his vacation and I was to come in to get my jug.

Thankfully, the pain is quite bearable today. It kicked a couple times after the lasix but that's about it. We seem to have dropped back to just uncomfortably bloated. Problem is I'm sitting here with a completely empty jug and still absolutely no desire to make a deposit. I've been up since 4 this morn. I've only managed a couple dribbles since yesterday afternoon and nothing since I flushed my first dribble of the morn.

How long can this go on before I explode? :eek:

Hi There, I had to reply to your message because my son has had this for 10 years. First I want to say how sorry I am about not feeling good and having to fight the doctors so you can get well. What makes you think you have this?? It is not very common. My son had issues very early on. But had a great doctor. What kind of symptoms do you have?? I would love to help you if I can, My son takes 2 medications 3x a day. Please let me know what you have been going through and your test and symptoms.

Wow. I really didn't expect to get a real live hit on this thread. I was mostly using it to dump some of my frustrations.

How old is your son? Was he born with it or did something seem to trigger it?

I guess my story goes back a long ways. I'm 48. I have a very rare type of secondary hyperthyroidism and and have been hyper all my life. Something that accompanies this is a selective IgG deficiency that makes me quite prone to infection. I was hospitalized for sepsis in 1992. Exactly coinciding with that, my phosphorous went low and my chloride went high and stayed that way on all my future labs. It did it during a thyroid storm the year before that too but didn't stay that way. For a couple years there, they were doing labs on a monthly basis to follow my thyroid and it was cheaper to run a full set as a package deal than the individual thyroid tests. Even when I asked about it, I was told it wasn't anything to worry about so I didn't.

Got my thyroid under reasonable control back in '95 and other than some major infections that needed to be dealt with, stayed as far from the docs as I could. I'd gone thru hell with the thyroid business and the wrong treatments for that and I'd become gun shy. I didn't want them messing with what was working.

Last may my thyroid kicked into high gear and I entered the world of managed care again last august. In february, I started bloating. By the end of march, I'd pretty much stopped peeing and was given lasix. Nobody was looking at anything but my thyroid. Two endos ignored the edema and declared that after all these years of being hyperthyroid that I don't have a thyroid problem. One said it was hypertension. The next menopause. They didn't take into consideration that problems with the kidneys drop thyroid hormone levels. I'd been "cured". Finally my pcp decided to look into it further and found that my kidneys were taking a dive. Found high chloride again so he got out the books and started testing. Everything that's come back so far is confirming it.

Tests: Hyperchloremic metabolic acidosis with a normal anion gap, positive urine anion gap, high ionized calcium, low vitamin d, urine ph consistently above 5.5, normal serum potassium. There's others but they aren't on my desk at the moment. Nothing else fits this pattern except renal tubular acidosis. Trying to do a jug today for the 24 hr chloride, sodium and potassium. Hey, I've managed 275ml so far. Progress!

Symptoms: Feel just plain ill. Edema. Periods where I pee so-so and times like now when nothing seems to get it flowing. Upper abdominal pain, flank pain, back pain. Bowed ribs, strange crook in the spine that have developed over the last 10 years or so. Was diagnosed as having costochondritis and osteoarthritis back in '93 to explain my aches and pains. Most of the rest of the symptoms are hard to distinguish from my thyroid problems. I'm not sure which to attribute em to.

I just received this diagnosis at the end of june, right before my pcp went on vacation. I see him again on the 18th after he gets back. It has never been treated. I had one doc who prescribed phosphorous a couple times when the levels got real low but that's it and it was years ago. The phosporous level when the pcp checked it seems ok now but I've been supplementing with dairy and those high calorie nutrition shakes for the last year.

Sorry to run on and on. I just can't believe a real live person exists who knows something about this. :) My pcp's not dealt with this before and I'm trying to learn as fast as I can.

Hi Helen, All I can say is wow, you poor thing!! I know it is very hard to deal with at times. My son was diagnoised at 2 years old, one of the earliest Diagnosied cases my sons doctor could find. He started having issues right after he was born. Consitpated very bad, crying alot (colic) not eating good. After trying diffrent formulas and stuff it never went away. As he started walking he was very bowl legged and was not growing well at all. After many visits with his pedi he promised me on his 2 year checkup he would run all the test he could to see what could be the problem. Well I got a call pretty quick after that!! He has type 1 RTA. I don't know anyone else that has this. (expect you!) It has been a long 10 years!! (he is 12 now) Many ups and downs but mostly up because of the meds. They don't understand why he got it. I had great prenatal care. I know you mentioned some test. For him this has caused kidney stones, bone disease. (ricketts or thin bones, that caused the bowled legs) He has tons of stones but with the medication they don't seem to bother him, thank god!) He has to much calcuim out put in his urine and then the potassium starts dropping, (that means not being able to walk and a heart monitor) when he is not getting enough meds and/or is sick with a stomach bug. (anything that will throw the system out of wack like vomiting, diarrhea and not eating) Does your urine have strong strange smell? I can always tell when he is not getting enough medicine because of the smell of his urine and because it looks foamy in the toliet after urinating. He will start getting constipated as well. I'm trying teach him to care for himself as he will grow up and I won't always be here. He has to do the 24 hour urine test as well. He also has to get blood drawn a few times a year, plus a ultrasound once a year. Do you have questions regarding this? I would love to answer them if I can help. I find it intreasting that you have a thyroid problem as well because they have a link to autoimmune disorders and I have just started having issues with my thyriod?? I was told he will not outgrown this condition as he gets older. but will not have to have a kidney transplant or anything. He seems pretty normal as long as he has the right dose of meds. Let me know if you have any questions and what is going on with the doctors visits. I agree it is nice to speak to someone as no one else I know has this condition. Hope your well!!! Sorry so long!!

Hi Helen, All I can say is wow, you poor thing!! I know it is very hard to deal with at times. My son was diagnoised at 2 years old, one of the earliest Diagnosied cases my sons doctor could find. He started having issues right after he was born. Consitpated very bad, crying alot (colic) not eating good. After trying diffrent formulas and stuff it never went away. As he started walking he was very bowl legged and was not growing well at all. After many visits with his pedi he promised me on his 2 year checkup he would run all the test he could to see what could be the problem. Well I got a call pretty quick after that!! He has type 1 RTA. I don't know anyone else that has this. (expect you!) It has been a long 10 years!! (he is 12 now) Many ups and downs but mostly up because of the meds. They don't understand why he got it. I had great prenatal care. I know you mentioned some test. For him this has caused kidney stones, bone disease. (ricketts or thin bones, that caused the bowled legs) He has tons of stones but with the medication they don't seem to bother him, thank god!) He has to much calcuim out put in his urine and then the potassium starts dropping, (that means not being able to walk and a heart monitor) when he is not getting enough meds and/or is sick with a stomach bug. (anything that will throw the system out of wack like vomiting, diarrhea and not eating) Does your urine have strong strange smell? I can always tell when he is not getting enough medicine because of the smell of his urine and because it looks foamy in the toliet after urinating. He will start getting constipated as well. I'm trying teach him to care for himself as he will grow up and I won't always be here. He has to do the 24 hour urine test as well. He also has to get blood drawn a few times a year, plus a ultrasound once a year. Do you have questions regarding this? I would love to answer them if I can help. I find it intreasting that you have a thyroid problem as well because they have a link to autoimmune disorders and I have just started having issues with my thyriod?? I was told he will not outgrown this condition as he gets older. but will not have to have a kidney transplant or anything. He seems pretty normal as long as he has the right dose of meds. Let me know if you have any questions and what is going on with the doctors visits. I agree it is nice to speak to someone as no one else I know has this condition. Hope your well!!! Sorry so long!!

I forgot to mention-He has to check his blood pressure as well because like you said it could effect that as well. It is so funny because I have been lurking on these boards for months and only decieded to post when I saw you thread. I have seen you post on the thyriod boards before I wondered in to the kidney board. Crazy huh!!! :D

You have no idea how relieved I am to find someone to talk to about this. You'll have to excuse me too, I can run on forever once I get started.

I just get so tired of being labled "unique", "atypical", "weird", etc., if you get my drift. It took me over 3 years of active searching and tracking to find someone who's family members have the same thyroid condition I do. BTW, it's a genetic mutation that's called pituitary resistance to thyroid hormone. I'm mostly hyperthyroid but some of my organs are hypothyroid. It's a thyroid hormone receptor defect and not an actual thyroid problem. It was never properly diagnosed either and my pcp's busy on that one too. He's agreed to take over my full care and stop sending me to all these so called specialists who keep sending me in circles and screwing up my care. Considering he's the only doctor in the area, I'm kinda glad he's smart and really cares. Kinda like the way doctors used to be.

I have never had issues with constipation but hypers rarely do. I can imagine all of this must have been really difficult to deal with in a child. Most of my test results are pointing to type 1 but as the pcp pointed out, there seems to be a bit of an overlap with type 2 and this seems to be what they used to call type 3. So far, no problem with stones. I'm a bit old for rickets but have no doubt I'll be told I have osteomalacia. The urine does have a funky odor. It just doesn't smell right. Strange you should mention that. I was reading that a positive urine anion gap is due to a lack of ammonia being excreted. Wonder if it has something to do with that?

I feel for you and your son. It's not something I would have wanted to be saddled with at such a young age. Being labled a precocious hyperactive child was actually rather fun. It was my mom who suffered thru that. I didn't actually get sick, sick with the thyroid until I was in my early 20's. That's when they started looking for an autoimmune disease when they missed the thyroid problem.

The information that I seem to be lacking is how they go about treating something like this and what kinda things to expect. Regular testing, medications and all those kinds of things??? I haven't found much information on that part of it. I also seem to have sustained some type of damage to the kidneys and have no idea what to expect there either. My gfr managed to drop from 95 last september to 71 in may. That's got me a little worried too.

There is a definite link between rta and autoimmune thyroid disease as well as a host of other autoimmune diseases. I don't have autoimmune thyroid disease or any other autoimmune disease. They've been looking for one since 1983. I kept disappointing them as all the tests always come back negative. They pretty much backed off on testing me so much for them when they found I was IgG deficient cause autoimmune diseases are almost always associated with high or at least normal levels. But, I did find an article or two that links it with non-autoimmune thyroid disease as well. It seems to be one of those things that has a lot of causes.

Yeah, everything I've read says once you have it, you've got it and it's a lifetime thing. I'm really looking forward to getting something done about it. It answers so many questions and explains so many of the weird things that have been happening over the years. I'm still trying to get over the anger though. I just can't believe they missed it. It absolutely jumps out of the stack of labs I've got. I find it a bit inexcusable.

Oh, you already found me on the thyroid board. For sure, stop on by if you got any questions on that thyroid of yours. Everything you always wanted to know about thyroids but were afraid to ask. Us thyroiders like to talk. You a hyper or a hypo?

You say he has to watch his bp. I was kinda suprised to find that I'd suddenly developed issues with that. What about glucose? Mine seems to go out of whack for a while and then seems to level out again. Any connection?

I will keep you posted and thanks. You're an :angel:

Hi Helen, I hope I can help answer some of your questions. First though I have to agree the smell of the urine is like ammonia!! It is so funny you said that!!! As far as treatment my son takes Citric acid with potissoum. he takes that 3x a day. He was taking just regular citric acid but his potissum kept getting to low and he would get weak. He also takes 2 potissum tablets. He has no kidney damage expect the stones. His doctor explained that before he had meds his kidney was sucking out calcuim into his kidney from his bones. (hence the stones and ricketts) The ricketts have gone away with the meds. The stones stay the same. I don't know the conncection between RTA and BP but his doctor says we must keep a eye on it because it will affect it. Another thing, have your hearing checked. They told me from the beginning RTA is conncected to nerve hearing loss. (Not so far thank god) So with the meds, blood work, ultrasounds and urine ,he does well. It does sound like you may have type 3. The medicine starts helping within a few weeks as I recall. It might be kind of hard for you because of you Thyroid to get the levels right. Then again once you start taking meds a whole lot of issues may get resolved at once!! (I hope for you!) I was told my son had colic, allergies, and many others issues before it was taken care of. I was lucky the pedi trusted my instints and I knew something was not right. I really think once you find the right dose of meds you will start feeling so much better. There was a huge diffrence in my son in a few weeks and with that first year he started thriving so much!! I think things will be looking up for you now!! We have issues once in a while but less and less as we know the signs when things are right. You really should try to see a specialist once in a while. I'm so sorry for all the time you lost not feeling well. My son was so sick once he told me he was going to die! he spent a week in the childrens hospital because he was so sick (he got mono at school) It is hard but we made it past that and you will get past this too, I can tell you are a strong person. It will get better! Let me know whenever you want to vent or ask questions or anything!! (sorry for the spelling errors!!)

I'm still trying to figure out exactly how the citric acid works. The only treatments I've seen are that and bicarbonate. The bicarbonate is easy to understand. One thing. My potassium levels have almost always been in the normal range. My serum calcium has also almost always been normal. Just had my ionized calcium checked for the first time and that is high. The other thing that kinda floored me was my vitamin d level. I've always gotten adequate d in my diet and I've always enjoyed my sunshine. Do they treat that seperate or does it come up with the treatment for the acidosis?

What'd you say??????? Now I got two things to blame it on. I've had trouble for years just never had it checked out. When I complained I was told to get ear wax remover and see if that helped. :rolleyes:

I think the connection between the bp and rta is the renin that the kidney produces to help control bp. The renin is connected to the salt levels and the hypothalumus and the angiotension and all that other good stuff. My renin is low but I also didn't discontinue my beta blocker for 3 weeks before having it tested like you're supposed to. I don't function without my betas and they are known for lowering renin. It's also connected to the aldosterone levels which also help control bp. I'm good there.

What bloods and urines do they regularly do?

Oh, this thyroid business is going to throw a monkey wrench in the works. I already know that. Right now I'm sitting on the edge. I get better and it's going to tip over the edge. I've been looking into a thyroid hormone analog that they sometimes use for treatment of this condition and am going to talk to the pcp about it. My kidneys are predominantly hyper but they're also hypo in some respects. Fun, fun.

I'll contemplate seeing a neph if we can't get it under control here. Problem is there's only one in this part of the state. From what I've heard of the few urologists around these parts, I wouldn't let em touch me with a ten foot pole.

I'm glad to hear that treatment makes a difference so quick. I want so much to be able to get back to enjoying life again. I do feel like an awful lot of my life was stolen from me. I also know exactly what your son was talking about. Give him a hug for me. OK?

Thanks for the encouragement. And sorry for my spelling too. I come from a long line of english teachers and writers. I got it from both sides. ;)

I'm still trying to figure out exactly how the citric acid works. The only treatments I've seen are that and bicarbonate. The bicarbonate is easy to understand. One thing. My potassium levels have almost always been in the normal range. My serum calcium has also almost always been normal. Just had my ionized calcium checked for the first time and that is high. The other thing that kinda floored me was my vitamin d level. I've always gotten adequate d in my diet and I've always enjoyed my sunshine. Do they treat that seperate or does it come up with the treatment for the acidosis?

What'd you say??????? Now I got two things to blame it on. I've had trouble for years just never had it checked out. When I complained I was told to get ear wax remover and see if that helped. :rolleyes:

I think the connection between the bp and rta is the renin that the kidney produces to help control bp. The renin is connected to the salt levels and the hypothalumus and the angiotension and all that other good stuff. My renin is low but I also didn't discontinue my beta blocker for 3 weeks before having it tested like you're supposed to. I don't function without my betas and they are known for lowering renin. It's also connected to the aldosterone levels which also help control bp. I'm good there.

What bloods and urines do they regularly do?

Oh, this thyroid business is going to throw a monkey wrench in the works. I already know that. Right now I'm sitting on the edge. I get better and it's going to tip over the edge. I've been looking into a thyroid hormone analog that they sometimes use for treatment of this condition and am going to talk to the pcp about it. My kidneys are predominantly hyper but they're also hypo in some respects. Fun, fun.

I'll contemplate seeing a neph if we can't get it under control here. Problem is there's only one in this part of the state. From what I've heard of the few urologists around these parts, I wouldn't let em touch me with a ten foot pole.

I'm glad to hear that treatment makes a difference so quick. I want so much to be able to get back to enjoying life again. I do feel like an awful lot of my life was stolen from me. I also know exactly what your son was talking about. Give him a hug for me. OK?

Thanks for the encouragement. And sorry for my spelling too. I come from a long line of english teachers and writers. I got it from both sides. ;)

They do the a Chem 7 (or BMP) it measures the acids levels. I believe it checks the electrolytes as well. The urine is the same kind of thing. The 24 urine output can tell them alot. They can measure how much calcium and stuff is coming out. My doctor thinks it is very important to do this test. I really hope you can see a neph with all the other stuff going on. I stand corrected on what he takes it is potassium citrate. plus the potassium tablets alone. I believe you have type 3 with your potassium being normal and no stones. Type 1 and 2 normally cause those symptoms. That makes since with the BP. Let me know how everything is going and if you have anymore questions!! :D

Do you by any chance know what else other than calcium they're checking the urine for? This last jug I turned in is for chloride, sodium and potassium. The other jugs I've had done were for creatinine, protein and of all things metanephrines (that was the endo's idea - I think he did it as a joke). I'm trying to find out everything I need in order to get this rolling as fast as I can. I'm getting awful tired of being sick.

I'm getting my shopping list together and going to drop it on the pcp on wednesday. Labs, tests and scripts. It's going to be interesting seeing his reaction but I figure if he didn't spend his vacation time studying up on it, I've probably managed to get ahead of him. At least he's the type of guy who's got a good sense of humor and doesn't get offended easy.

Thanks for all the good leads. There's something about having the human element added in that is really making a difference. :)

I still wanna know about your thyroid. Them thar's sum fascinating li'l critters.

Hi Helen, :)

I read your thread with great interest. Thank you for leading me here! The information you provided about this rare and relatively unknown condition is much appreciated. I am so glad you've found somebody you can share your experiences with on a personal level, given how rare this disease it. Please keep us informed of any info you are more than likely to come across.
I will do as you suggested and see what turns up.

My gfr managed to drop from 95 last september to 71 in may. That's got me a little worried too

Mine is lower than that in mid 60.s Just wondering at what level should we start getting really concerned? My nephrologist said this was GOOD. He somewhat contradicted himself in his latest report, which I just managed to get my hands on. In it, he expressed concern about my blood pressure major-league anti-hypertensive therapy not being consistently effective. (I have severe, drug resistant hypertension). This is not helping my kidneys and he says unless there's a better BP control established there will be further loss of kidney function.

What is an acceptable GFR?
Thank you,

Flowergirl

Hi flowergirl,

You're welcome. You know a good place to start reading is at the National Kidney Foundation's web site. They've got a lot of good information on gfr and such. That's where I started. I was really impressed with their site.

If you want some more "interesting" reading, you can head over to the thyroid board and look for my thread there. It's called midwest-labs? That's chapter one of this saga. I'm the resident hyper mutant over there. :D

Hi Helen, :)

I read your thread with great interest. Thank you for leading me here! The information you provided about this rare and relatively unknown condition is much appreciated. I am so glad you've found somebody you can share your experiences with on a personal level, given how rare this disease it. Please keep us informed of any info you are more than likely to come across.
I will do as you suggested and see what turns up.



Mine is lower than that in mid 60.s Just wondering at what level should we start getting really concerned? My nephrologist said this was GOOD. He somewhat contradicted himself in his latest report, which I just managed to get my hands on. In it, he expressed concern about my blood pressure major-league anti-hypertensive therapy not being consistently effective. (I have severe, drug resistant hypertension). This is not helping my kidneys and he says unless there's a better BP control established there will be further loss of kidney function.

What is an acceptable GFR?
Thank you,

Flowergirl

When you say "acceptable", that has different meanings to different Drs., as it depends on many variables, such as age, other health issues of the person.

My GFR is 55, I am age 56, which puts me at stage 3. I do not have high BP, diabetes, or any other serious health issue, so...my Neph is not too concerned. Plus, the cause for my low GFR is not clear either. SO, I'm sure that makes a difference.

So, I'm sure the Dr. has to put all these pieces together to come up with what would be acceptable for each person.

I notice you have some health issues, but don't know your age, so your Dr. may say your range is NOT good, as it could go down fast, etc. Or, not, with proper treatment.

Isis, :)

thank you for your post. I am 48 and have several serious health issues. I have not been overly concerned with my kidney situation as there were other things to worry about and besides, I kept hearing my kidney function was good. Thanks to you, I see that it's all relative. As we all know, high blood pressure causes kidney disease, and kidney disease results in high blood pressure. Sometimes it's difficult to make a distinction as to which came first. The doctors thought I had fibromuscular displasia with spontaneous dissection. Now they are looking into travelling blood clots but the fact is, we may never know what caused mine. I am starting to think my hypertension might not be secondary. Most likely, my kidney problems developed due to a damage caused by uncontrolled high blood pressure.

Access12,

I got the invite you sent me, thank you I am already a member though more of an observer then anything else. I have to get more active into that when I get a chance.

Well, here's the latest. Saw the pcp this morn and got the results of the jug.

Chloride: 4 (150-250)
Sodium: 5 (40-220)
Potassium: 4.5 (30-90)

Ooops. :eek: Something sure ain't filtering properly. Doesn't look like those nasty little tubules are doing their jobs at all. Perhaps I need to fire em.

I've got an appointment to see the neph on August 28. He's kinda booked solid.

In the meantime, I go for a belly ultrasound on friday, a pituitary and hypothalamic mri on saturday, doing a dexamethasone supression test as soon as it's set up and see the pcp again next thursday. He wants to get me started on some vitamin d and figure out what else to do.

He spoke with a thyroidologist at a conference over the weekend about my thyroid and seems to agree with what I've been saying and will probably go with my suggested course of treatment on that one.

He says I'm weird.

For the time being I've now got a bottle of tylenol #4. I'm happy. :D At least I can enjoy the wait.

You still with me jonoct3? Got another update.

Saw the pcp again today. U/S came back ok on the pancreas and gallbladder. MRI showed I still have a brain with no pituitary tumor and no other lesions or anything weird. He's going to run the final blood tests to confirm my thyroid diagnosis and then we can start proper treatment on that. He wants my research papers. Says he's been reading up on it at night and finds it quite fascinating. :cool:

He's starting me on 1600iu vitamin d for now to try and prevent any more bone loss. He wants to do a functional test on the gallbladder to make sure that that isn't what's causing all the pain and he wants to wait for the neph's directions before proceeding on treatment for the RTA. I guess he's got a point. It's gone on this long so another month probably won't make much difference. The more I read about it, the more I can understand his reluctance to jump right in and tinker with it.

I guess I just wait and see what happens from here..................

Wow it did show a brain?......fascinating.........did any of the docs want to borrow it?

;) :D

Yeah, imagine that! It says right here "the brain shows no specific abnormalities". Can you believe that????????? Maybe they just didn't look hard enough. ;)

But, as a matter of fact, the pcp told me yesterday that I was better at research than he was and to send over anything I've got. I didn't overwhelm him (I hope) and only sent a small portion of it over this morn. It only printed out to a little over an inch thick. He's going to sh** :D Maybe I outta send him one on how obsessive a hyperthyroider can be. :eek:

Maybe you should send him a bill.

I think I'll give him a kiss instead. He's the first one who has ever bothered to even look at my chart. From the way he can recite things out of it, it appears he knows it almost as well as I do.

You have no idea how good it feels to have someone who, after 25 years, has actually looked, listened and seen. I feel like I've found my pot of gold. :D

Hi Accessn12,
I'm still here!! I had issues with my PC and then my son got sick. I'm so glad someone is looking at your issues and taking the time to work with you, I can't wait to see what the neph says. I saw a another posting of yours and I would agree with the labs you posted it looks like RTA. My son got a stomach bug and within 24 hours had labs done and they were at the very low end of normal and so I have to keep a close watch on him and see if he can keep his meds down today. If not we might have to go in and get him on a IV. Another issue is he had 3 hearing test done and he has hearing loss in his left ear so weds I have to go to a audioligist appt with him. His Kidney doc says it is most likely not from RTA (nerve hearing loss) because it is one ear and not both so we will see what happens. You sound so much better with the last couple of post then before, Just having a doctor that will listen and cares makes all the diffrence in the world!! Glad the other stuff came back ok too!!!!!

Hey, great to see you back!!!

Sorry to hear the boy's sick. Is this something you always see when he catches a bug? I had pneumonia a couple years ago and remember when they got the blood gas back, the doc yelling for the nurse to get the bicarb stat. They had that pouring into me the whole time. Never thought much about it but perhaps it would be worth stopping by the hospital and picking up that chart? It's one of the few I don't have.

I've been lucky and haven't had a stomach bug in a long time. I don't have a lot of contact with children and I think that probably has something to do with it. I don't like to eat out either and sometimes get a bit compulsive in making sure everything I do in the kitchen is by the book. Last stomach bug I got, I really thought I was going to die.

It is an awfully big relief to know I finally got someone willing to watch my back. So many years of being ignored was starting to wear real thin. It's doing wonders for my head. But then again, so's the tylenol #4. ;) Gawd, I wish they'd find what's causing this pain though.

I thought there was a separate nerve feeding each ear??? Perhaps I'm wrong and to be honest, I haven't looked much into hearing loss. Let me know what the audiologist says.

Oh. I've now been officially categorized hypertensive. Haven't had a normal reading since last fall.

Had a question though. Is there any tie in to sugar? The nurse practioner who I used to see at the pcp's office (she's gone back to school for her doctorate so I haven't seen her in a year or so) came by the shop to pick up her puter and wanted to see my labs. Told me I had a sugar problem to top everything else off and to go get a meter. I did. It's bouncing like a rubber ball. No rhyme or reason to it. I'm going from normal to hyper to hypo at the flip of a switch. It's really strange cause it's totally irregardless of food and doesn't follow any normal pattern that I can find.

Those labs kinda suprised me. So you're saying that's pretty typical? Frankly, they look kinda scarey to me. I did manage a whole 700ml that day. That's with the lasix. :eek:

Honestly, this whole things got me a bit nervous. I feel so horrid and wish I didn't have to wait so long to see the neph. :(

Thanks for the hand though. It really helps.

I guess I did not do that last one right. As far as i know there is no tie to sugar. I would think though the Blood pressure and thyriod issues might cause it to go crazy, and unforturently it may be you just have diabetes. I hope not!!! Yes, my son does tend to have to be careful if he gets a stomach bug because of the electrolytes and stuff. I really hope they can help you with the pain you have and figure everything out. Hang in there and I'm here to listen whenever you need!!

Darn. I was hoping there was. Couldn't find a tie-in with an online search either. Was kinda hoping it was something that might clear up with treatment of the acidosis.

How's your son coming with the stomach bug? Is it clearing up yet? Does he only have trouble when it's a stomach thing or is it pretty much with any illness?

I'm feeling a bit bummed today. I'm only going into work two days a week now and working at home the rest of the week. Today was a real lu lu at the shop. I used to be able to handle days like today without blinking an eye. It was ruff and I just couldn't keep pace with it. To top it off, I had one customer come right out and ask if I have cancer and another commented on how bad I look and wanted to know what was wrong. Just the kind of thing that really makes your day. :(

Now I'll get off my pity pot. I'm knocking wood, but I think the vitamin d may be helping. I don't think it's my imagination either but I think some of the really bad muscle weakness is easing up a bit. Just kinda noticing little things like being able to pick up things that I couldn't just last week. I sure hope this is the start of a major turnaround. It's hard to believe that something so simple could make a difference. Someone had told me that they started feeling a difference just 2 days after they started taking it for their vitamin d deficiency. I didn't believe her but hey, I'm starting to. :)

I'm feeling a bit bummed today. I'm only going into work two days a week now and working at home the rest of the week. Today was a real lu lu at the shop. I used to be able to handle days like today without blinking an eye. It was ruff and I just couldn't keep pace with it. To top it off, I had one customer come right out and ask if I have cancer and another commented on how bad I look and wanted to know what was wrong. Just the kind of thing that really makes your day. :(

Just tell them it is the darn bird flu coming back. You just can't seem to get rid of it. Then turn and cough in their direction. Apologize immensely and walk away. You have to walk away as you may start chickling and laughing so hard that it would just be.....well.......rude!

Is today any better? Hang in there.

Thanks. It was just one of those discouraging days. I was trying to get thru it without the tylenol too which was probably a little dumb. Then I went and looked at the calendar and realized I still got a month to go before anything's done about it.

Yeah. Better today. It's a work at home day. Didn't have to deal with people. Just me and the paperwork. Then I decided to drop everything and lounged in the sun for a while and looked at the trees and listened to the birds and the babbling creeks. Life is good. :)

I will definately work on my comeback. That just might do it. lol

hi accessn12, I'm sorry you had a bad day. Mine was pretty bad too. my son had his hearing appt today and it was not good at all. It appears the RTA has caused in both ears nerve hearing loss. The right ear not bad up in the high tones. The left ear is really bad!! I was shocked the nerve damage was a little worse and then somthing within the ear as well. (the bones or something) more test needed to figure out what. The loss of hearing is so bad she said he needs a hearing aid!! he is only 11! They don't even know how bad the nerve loss can be!! I'm heartbroken and so sad he has to go through this. A bad day for sure!!! Sorry to vent it still sinking in at this point. At least his stomach bug is better.

Ah geez. What a bummer. I can't imagine what it would be like to watch your child go thru that. How's he taking it?

Is it the cochlea (the bone) they're talking about? Is that by chance connected with the rickets? I'll see what I can find on the nerve damage and let you know if I come up with any info.

At least the technology in hearing aids has advanced so much that he's not going to miss out on a whole lot. It's good that you caught it. Imagine how bad it would have been for him if you hadn't done something about it. You're a good mom and you're doing everything that you can for him.

I send hugs to both of you.

Helen

Jonoct,

I've been doing some reading on the rta/hearing connection. Got a question. Have they ever mentioned a genetic mutation as possibly being the cause of your son's rta? If not, has anyone ever said what they think may have caused it? I've run across some studies that were done over in saudi arabia on genetic mutations and was wondering if I should pursue that angle.

How are things going? Are you feeling better?

Tomorrow's the long awaited appointment with the neph. I'm really nervous. I hate seeing specialists. It's twisting my tummy in knots. PCP's right. All this crap is probably giving me an ulcer.

To top it off, sent hubby in this morn for a copy of my labs so that I would have them in hand when I went in tomorrow just like I was supposed to. The ones I made a special appointment for. The ones I was supposed to have done exactly one week prior to my appoinment. Not one day early and not one day late. The ones both the pcp's office and the neph's office called me about last monday to make sure I was having done. He came home with a copy of one lab. Sex hormone binding globulin. A call to the pcp's office and they said to come in and I could look at the chart and tell them which labs I needed. Off to the office this afternoon. Ooops! There must have been a mixup. We forgot to do them. We're sorry. :mad:

Does it every end? :(

Geez, don't you just hate it? So what happens now? Does this mean they did not do the right tests? How long have you had to wait for your appointment with the nephrologist? You know, that's Murphy's law. I wonder what you guys will talk about with no labs to refer to. I guess rescheduling your appointment is not an option?
I don't blame you for being nervous. Anybody would be. Just the same, I wish you good luck and hope all goes well, labs or no labs! :)

They didn't look in the chart and see the lab order. They only did the two tests that I had put on a handwritten note to the pcp that said please add SHBG and FT3 to the labs. They looked at my note and that's it. That's what I got. Maybe I outta start writing my own lab slips????

Let me see. It was March 19 that they screwed up the first jug and didn't mention it to anyone. The second was done on May 7 after I saw the mishandled specimen report and I was notified May 16 that results were fine. By June 1, I had my hands on the not so fine report and had spoken with the pcp who ordered the referral to a neph. That went on someone's desk to be forgotten. Several more bumbled tests later (we won't go into all of those) the pcp asks when I'm seeing the neph. I tell him I haven't received the referral from the insurance company yet. He walked me down the hall and plopped me down in the nurse's chair and told her to get me the appointment now. I sat there while she made the phone calls. This was 6 weeks ago.

I don't think rescheduling's an option.

To them it''s an opps, to you it's your life......they just don't get that, do they? B---------

No, they really don't. It's the staff though. My pcp himself is really good. He's just so overwhelmed trying to be the only doctor around that he has to rely on his staff. I may mention to him that if his staff would do their job, he might not be so overwhelmed. He's been trying to help me since september. He'd be seeing an awful lot less of me if it wasn't for all the screwups.

Oh, I looked again at the two labs I did get the results on. Something didn't look right. They ordered the wrong T3 on the thyroid. Ordered total instead of free. The note I wrote specifically said FT3 and I've got lovely handwriting. I've got me another worthless lab to add to the growing list.

This guy this afternoon better be good. I don't know what I'm going to do if he turns out to be another idiot.

Well, I have RTA. It's down in black and white sitting right in front of me. The neph very carefully pronounced it and said that it causes the kidneys not to excrete what they should. That's all he said about it. He took the fastest medical history I've ever seen and looked at my feet from across the room. I was wearing flip flops cause I can't wear shoes anymore cause of the swelling and the creeping crud that's all over em.

I think I got a whole 5 minutes of his time. 6 would be stretching it. He said he agrees with my pcp and that I have RTA but I need more labs. Didn't bother to look at what I brought with me to see I'd already had most of em done and said see you in a month, handed me the lab sheet and started walking out the door. I stopped him and got a chance to ask him what I'm supposed to do in the meantime about all the pain and feeling so sick and he said RTA doesn't cause pain and I'd have to talk to my pcp about that. I've got a return visit scheduled for the 3rd of October and a lab sheet that says in his writing ASAP and the checkout girl's one week before the next appt.

He says beta blockers can not be taken for hyperthyroidism (didn't get a chance to tell him I'd been taking them 16 years for hyperthyroidism) and
I'm to stop taking the lasix.

I'll be parking myself tomorrow morn in the pcp's office. I'm going
to play walk in. When I called after getting home to get an
appointment as quick as possible, I was told the 17th of
September was the earliest I can see him. When I told em I'm sick
and need a refill on my pain meds, I was pretty much told tuff luck.

One crappy day. And I've waited 3 months for this????

Oh Helen,

I really don't know what to say. I can still remember when it happened to my husband. He walked away from his appointment in tears. He had waited months for it, put all his hope in it. He got maybe two minutes with the "'specialist". The doctor asked him one question, basically. It was:" Do you have money?" Hubby, shocked, replied he had about as much as the average person. The doctor then said: "Sorry, then I can't help you." That was it. Keep in mind that there's no private practice here, our Medical covers all basic costs and doctor's visits.
It really sucks. What's one supposed to do? Thank god for the internet. Unfortunately, we cannot rely on the doctors anymore to keep us informed. They are too busy chasing their financial goals, trying to see as many patients as possible. Have you noticed in your medical reports that these five or ten minute visits with specialists seem to generate pages and pages of correspondence, describing the details of the "examination" and all the things that were done during the visit. When I read some of those reports, I realize that my memory must be a lot worse than I think! :D
I guess it's up to you to figure out what the doctor might have meant regarding stopping the beta blockers. It probably had to do with the kidney clearance, unless they are metabolized in the liver. I can't remember right now. A cardio told me that beta blockers don't usually cause people to be short of breath. Therefore, I should NOT be short of breath. Anyone who's been on beta blockers knows that's not true. I guess he must have wanted me to stop complaining about not being able to breathe.
Your plan to show up at the doc's office is your best bet. I don't see what else you can do. Remember to ask about the BBs. Just wondering if any of your pain could be due to neuropathy, since you have diabetes. It can get very nasty.


FG

This is the third appointment I've waited months for since last august. Two bimbo endos and then this clown. I'm kinda used to it.

He was just an ignorant twit is all. Beta blockers are the treatment of choice for secondary hyperthyroidism. When I don't take them I head right for thyroid storm. He probably doesn't even know what secondary hyper is. Ran into an endo who didn't either. It's not exactly common. He wasn't saying to stop the betas, he just said they aren't used to treat hyperthyroidism so therefore I must be taking them for another reason. I got the same speal from the jerk at the er. I think they must think I'm some kind of an idiot and don't know what I've got or what treatment I'm taking for it.

I've got a real winner of a report for the whole shebang workup from a doc who never left the doorway. That's the endo who didn't know what secondary hyper is. He diagnosed me from my insurance referral form that just said I was hyperthyroid.

The pain isn't from neuropathy. I've got that near my hip and across my shoulder blade. It feels like someone took a branding iron to them at times. I know what neuropathy feels like. I've had it on and off in various places for years. This pain is coming from somewhere inside the abdomen. There's no doubt in my mind about that.

Hey, aren't I lucky? I get to see the gastro on September 7!!!!!!!!!!!! I can't wait. :bouncing:

Hey, aren't I lucky? I get to see the gastro on September 7!!!!!!!!!!!! I can't wait.

You lucky girl! :) Fun never ends. You have to look at the big picture. They'll get their act together eventually. I think that doctor/doctor communication has become almost as bad as doctor/patient communication. No one has the time for it anymore.

I have one appointment coming up a week after yours. I need to see this doctor and have much to go over with him. Luckily, he usually gives me a 1/2 hour of his time. I hope this time won't be any different. I'll have a couple of pages of questions and notes.

I hope all goes well for you tomorrow. Would it help to get you in faster if you walked in looking really, really ill? I'll bet you would not even have to pretend! Just be yourself. :)
Good luck!

You have to go in looking pretty ill. I had one uro tell me that I was not in pain or it would show on my face. HUH????

These guys are really ridiculous and then they have the gall to charge us or insurance $100s for a look at you from across the room. Sometimes they don't even check my bp unless I ask

I chuckle when I see that you guys have labs - gosh should they be doing that. My PCP will order labs if I want them the other guys - nuh - put they will let me pee plenty in a plastic jug and send it off for analysis.

The problem with the specialists is that YOU as a patient have to figure out which specialist to see but UNLESS you know what is ACTUALLY wrong - how do you know who to go to?

I was hoping for a better outcome for you Helen - I know you must be angry, depressed, frustrated and any other roller coaster emotion that occurs - if you need to beat them with a cast iton skillet, I left you "Snapper braised in red wine and fresh juniper berries" in the cooker, the pan can then be used to beat some sense into them.

Hang in there - wish we had some answers for you.

I look like death warmed over but I guess that's not quite sick enough looking.

Went in and got sent back to my buddy the lab tech gal. She said they didn't have the equipment for the arterial blood gas and I'd have to go to the hospital for that. Ok. No prob but I wanna speak to the doc. Sorry, no can do without an appointment but you can speak to the nurse. Which one? Lois. I ain't speaking to lois, she doesn't like me. She agreed. Katie's here! Good. She was shocked. I now have an appointment with the gp at 9:15 tomorrow morn. My blood gas and all the other labs were done this morn and they're faxing the results to him.

I only had to do a cup this morn. Cute little thing. Four cups of coffee and I managed to fill it halfway!!!

Fingers crossed gals. I may be on a roll.

Good show! 1/2 cup or urine is quite an accomplishment! I had to come up with three containers at least half full. I did not have a problem with that, though. Because of my daily 75mg of diuretics I am constantly sipping water anyway, as I don't want my feet to shrivel up like prunes. I still have a few bumps and indentations on them leftover from the edema, so they look weird in the best of times.

So glad to hear things are looking up! It's good to know the right labs were finally done. Let's hope everyone is happy with the results. :)

OK,

next time you go, put makeup on, smear it all over as if it has been on for days, (only a tint of lipstick left on like 1/4 of your lips - eyeline running half way down the cheek, blush so obvious it makes your skin look transparent white, eyebrows drawn on crooked) wear tattered clothes, leave any drool on you face for at least a week - drink milk before drooling, no shower for a week prior, eat plenty of onions and then boycott your toothbroush, use no deodarant or perfume, don't comb your hair, roll in the leaves in the backyard and stumble in - maybe THEN he will believe you. Any questions he has for you reply - WHAT? or Yeah right and see if THEN HE takes you serious.

Brick wall. Doc's sick. I've been rescheduled for next tuesday. Sometimes I wonder why I even bother.

But does he LOOK sick.

You scared him off, Helen. Maybe he just doesn't want to face you?

2+, actually the poor guy looked exhausted. I'm hoping he doesn't burn out. Perhaps a good long weekend will do him good.

flowergirl, the thought did cross my mind. He took the whole blame for the lab screwup and sent his apologies via the receptionist for his mess up. It wasn't his fault. It was his staff's. I saw the order in the chart and pointed it out to them when I went in to get the results. They just didn't look.

I'm just feeling real bummed cause it seems everytime it looks like I'm almost there, someone rips the rug out.

Yeah - I have sung that song myself - WAY too many times!

Hang in there and don't get discouraged - just hack their system or network instead.

Hey, Helen. I am so sorry that you have been through so much. It really isn't fair. I really hope that you will get some kind of answers pretty soon. Did they redo the labs yet? Sorry that you are in so much pain. Hopefully they will finally be able to tell you where the pain is coming from!!

Yeah, I'll hang in there. Gonna be a real bummer of a weekend. Gotta have one of my cats put down. He's not going to make it. He's got something going on in his head and suddenly went blind the other day and I don't want to see him suffer. It's most likely a tumor or something like that and he's just getting weaker by the day. I raised him from a bottle. I've had him for 13 years. I'm sad.

The labs were run on an emergency basis and I got the results just in time to take them with me to the neph. They clearly showed the acidosis. I'm now trying to get hold of the blood gas and one other that were done on wednesday. I got the rest of em off the pcp's office yesterday but it's missing two of the tests. I know the abg is done cause the hospital tech was running it while I was there. He said it would be finished in about 15 minutes and they'd fax all the results over. Gotta track those two down.

Found something interesting in my readings. Milk lowers the acid in the blood. I've been getting these insatiable cravings for milk on and off for the last 15 years. I used to hate milk. I find that kind of fascinating that my body seems to be telling me what it needs.

That's so weird about the milk. I absolutely hate to drink milk. Love soy milk (the very vanilla), but since the stone diet won't allow that anymore, I have quit drinking any type of milk. I am glad that you started liking it since you need it! It is amazing what the body does. :)

Sorry to hear about your kitty. We lost one in the spring, about the same age. Tests were run. The doc said no prob, she'd do surgery and he'd be fine. That did not turn out to be the case. We were devastated. His littermate, though arthritic, seems OK for now.

I love milk and it's good to know it can help with the serum levels of uric acid. I did a lot of reading about the uric acid and its formation and excretion (or lack of) and the poor, poor detection rate of its high levels. There was a thread about gout and uric acid a few weeks ago on the arhtritis board. We discussed it also on the BP board. Uric acid is a big issue for those of us on diuretics.
I hope you'll get through the weekend OK. You can't help being sad. A good cry helps to deal with the loss. Takes time.

Strange that we treat our pets more humanely then we treat ourselves. Helen you are making the right and courageous decision to put kitty down many people try to see if they can get them to hang on - for who - us or them?

I truly believes ourr bodies crave what we need - even as an infant. We actually were just having that conversation this morning here at work.

One of his littermates had a bladder blockage this last spring. Vet said no prob. Surgery, catheter, oh he'll be just fine. Yeah right. 2 weeks later, he'll be just fine. I watched that cat suffer and we still had to put him down. I'm not doing it again. It's so unfair to them. These cats were born with feline leukemia and should never have lived this long to begin with. We gave them a good life. Going to have one left from the litter of 4. I'm trying to work on the fond memories now.

flowergirl, you might want to read up on how milk affects uric acid. I know it helps chloride levels but didn't see anything in particular on uric acid. Need to be careful cause it can cause stones. The type of acidosis I have is unlikely to cause stones and possibly even prevents them. My uric acid level is perfect. Always has been.

So sorry about your cat. We have had 2 cats for 10 years now, and we would all be devastated to lose one. They become part of our home and our life and it's like a part of you is missing if they're gone.

I'm not into milk, myself, but love icecream!:) And shakes!:D

Helen,

I need to ask a question. My edema is back. It was just my feet at first for a few days, I could live with that. Then my calves & legs. I hate it but I'd had it before. These last couple of days my stomach swelled up so much, starting under the breasts, I look 8 months pregnant. I doubt I'd fit into anything without an elastisized waist. I was going to go to a walk-in clinic this morning. Probably should have. Decided to give it one more day. The thing is, it's not so bad in the mornings, but come evenings I look like a blimp. I guess I'll have to go to the clinic tomorrow as I am scared silly. My question is: how can this happen while I am on a big dose of diuretics - you'd think it should not! I drink lots of fluids because of the diuretics. That's the thing to do, right? I am not sure about anything anymore. I wonder if it's caused by my meds. I think I need liver and kidney function tests asap. The clinic opens at ten. I should not be so swollen in the morning. I have a regular doctor's appointment for Tuesday but feel I should not wait until then.

Does your edema affect your abdomen, too? Am I panicking for nothing? What do you think? You've had to live with it. Any input would be appreciated. With my luck, I'll look almost normal in the morning. They'll think I am nuts. :D

thank you,
flowergirl

Don't panic. Mine does the same thing. I've taken to wearing bib overalls. They don't bind the stomach. Barefeet too. It's good I live in hillbilly country cause I fit right in. Mornings are the smallest (cause it's more spread out) and by night it's the worst. It's almost always not nearly as bad when I've got an appointment. Before the pain got too bad to sleep on my side, I'd wake up in the morning with one boob a lot bigger than the other. The whole side would feel too big and I'd feel lopsided til I'd been up for a while and things started dropping.

Edema that affects the lungs is the point of worry for me. As long as I'm not wheezing, I've gotten to the point where I'm ok with it.

Lately it's not nearly as bad. I'd say half of what it was. I haven't had to take lasix for almost 2 weeks now. I think I may have found why it goes up and down. The higher the sugar stays, the smaller I stay. When it was up around 180 there for a couple days, I was peeing like crazy and went back to almost normal size. Sugar's now dropping and I'm getting a little larger. It seems to be pretty bearable when it stays 100 or above. It was staying pretty much between 50 and 100 when I was so huge.

If you're peeing ok, I'd say you're most likely safe. I didn't hit the er til I'd only peed twice in two days. That kinda scared me. They still sent me home and didn't do anything. Told me to make an appointment with my gp.

Helen, :)

thank you so much for clarifying these issues for me. You've made me feel so much better!
Predictably, my feet look OK. They don't itch, hurt, or look swollen, maybe just a little around the ankles. Legs look almost normal. My gut is still pretty big though not as huge & tight as last night. I was up all night peeing. So, no problem there!
It really sucks. I guess I'll wait a couple of days to see a doctor, until my appointment. They don't do much at these walk-in-clinics, anyway. Just check you out & give a prescription. The labs are probably closed over the long weekend.
I would stop taking the med that I think might be responsible for the edema. Can't do it. When my calcium channel blocker was suggested as one of the possible causes of my edema, I got so mad I stopped taking it. This resulted in tachycardia and my being sick for a few days. (My regular GP was on holidays) Then one night sharp constant left chest pains lasting hours. Very scary. After he returned, my doc insisted I go back on it, 1/2 usual dose at first then titrate. So I am back on a maximum dose. This med can cause a heart attack or angina if you suddenly stop taking it. I thought of stopping one of my diuretics, the Hctz. Since I dont' know my electrolyte status, I know I should keep taking the other, my potassium-sparing Spironolactone. Would stopping it it help with the edema?
How would you know if there's edema in the lungs? My eyes start producing tears as soon as my head hits the pillow. I also start swallowing like crazy. I have this "lump" in the throat all the time. And cough. Feel congested. I thought one of my medications, Ramipril, was causing the coughing. This is a nightly happening for me and never fails. The tears, the cough..Geez, I wish I did not have to take any medications. Thank you so much for your advice!

flowergirl
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The last thing I'd do is stop the hctz. If you have edema, you need the diuretic. You're probably on the potassium sparing one to even out the effects of the non-potassium sparing one. Stopping the hctz may send your potassium too high which is just as bad as too low. Talk to your doctor first.

It's easy to tell when you got water on the lungs. You start to feel like you're drowning, especially when you lie down. You can hear all kinds of weird noises too. Crackles and so on. It's most likely the Ramipril causing the cough. Ace inhibitors are famous for that, especially at night.

I really think you're going to be fine until you see your doctor on tuesday. Ask him what he thinks. You may have to start keeping a closer eye on your salt intake. Or perhaps you're drinking more fluid than the diuretics can handle? Have em run a metabolic panel and see what the glucose, sodium and potassium levels are. That will give you a better idea where to start.

Helen,

I've had potassium issues since day one. Mine was 3.0 I think, at the time of my hospital admission. That's the main reason for Spironolactone, even though it is contraindicated in reduced kidney function and must be used with extreme caution. That's why the low dose-25mg, which does nothing diuretic-wise. The Hctz is a recent addition, prescribed to treat the previous peripheral edema. My GP thought I should just stay on it when he returned from holidays.
My blood pressure specialist must have had a good reason for not including this gold standard in treating hypertension in my therapy. I have a feeling I should not be taking it at all. Thank you for explaining what pulmonary edema sounds like. It helps to know these things. I do feel some of that once in a while, but no sounds, loud or otherwise, whatsoever. It's just congestion from the meds. Some will do that to you.
I sincerely hope this is a passing thing with me. I cannot imagine feeling and looking like this all the time. I don't have any of my "fat clothes" as I periodically sort through the clothing and donate what I don't wear. I have some summer shorts with elastisized waist (I don't normally wear elastisized clothes). With my legs being so fat when swollen I'd be ashamed to leave the house wearing shorts. With any luck, I've kept some jogging pants. Have to look. Heck, I might have to wear my robe! :D

Helen,

Lately it's not nearly as bad. I'd say half of what it was. I haven't had to take lasix for almost 2 weeks now. I think I may have found why it goes up and down. The higher the sugar stays, the smaller I stay. When it was up around 180 there for a couple days, I was peeing like crazy and went back to almost normal size. Sugar's now dropping and I'm getting a little larger. It seems to be pretty bearable when it stays 100 or above. It was staying pretty much between 50 and 100 when I was so huge.

I'll ask my doctor for a fasting glucose test. I have not had one in a couple of months. Reading your post makes me think that hey, if low blood sugar aggravates your edema, the same could happen to me. It was still within range the last time they tested it. One of my meds, an ACE inhibitor, helps keep blood glucose in check. I hate to think what my actual reading would be without it. I wonder what it would take for it to drop drastically. I guess I know what I'll be reading about tonight! :)

Sorry. Would have got back to you sooner but we laid the cat to rest yesterday. It's kinda hard losing a member of the family. Not having kids, I sort of substitute it with my animals.

I sure would like to know what's bouncing my sugar so much. I don't take meds that would affect it and my diet stays pretty much the same. Only one member of the family has diabetes and that's my dad's brother who is obese and developed type 2 in his 60's. He was also military and was exposed to agent orange, a known cause of diabetes. But there is a definate correlation between my sugar level and how much I'm peeing. It's getting to the point I can tell exactly how much I'm going to go that day by what the level in the morning is. If it's above 150, I even know I'm going to be up that night at least once. It's for sure causing some type of diuretic effect. It may be thyroid related. I don't know. My thyoid levels are up at the top now and they had plummeted when the edema started.

♫ The toe bone's connected to the foot bone. The foot bone's connected to the ankle bone. The ankle bones............ ♫ ;)

Good luck in your search. And good luck with the doc.

I think you are the one who needs the good luck wishes! I hope you won't stay too sad for too long. You'll miss your cat very much, especially in the first week or so. We become so attached to them, as we do to kids or other family members. They are always there for us, no matter what, giving unconditional love and not asking for much in return.

I hope you are not in too much physical pain and that you'll get through the rest of the day, and the next few days somehow. :angel:

You must have a special keyboard...love those note signs.

Helen,

Though Midnight and Dawn have not yet figured out how to type without poseable thumbs they wish to have me extend my condolence to you over the loss of you kitty.

Hang in there!

How did you do the music notes?

Thanks. Actually King Edward was quite good with the mouse. Amazing some of the stuff he could bring up on my screen. He liked to sit here and snuffle my ear while I was working. The only thing he could do with the keyboard was toss a hairball in em once in a while.

Ah, the magic of copy and paste. Quite a neat little feature. If it's a font that exists in any other document, you can copy it and then paste it in. Highlight it, ctrl+c and then ctrl+v where you want it. See? Magic!!!!!
♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫ ♫

GP appointment tomorrow. Time to jump up and down on his head. It's taking more and more of these T4's to even keep it almost tolerable. I hope he's feeling better cause I'm going in there like gangbusters. This absolutely will not do and he's going to know about it.

Had a good long visit with the gp this morn. He's feeling a bit better but says to really watch out for this virus that's going around. Says it's a reall lu lu. He's as unhappy with the neph as I am and he's giving him a call as soon as he calls the hospital regarding those missing lab results. He's getting a letter together for the gastro too and going to make sure he has all the info needed and doesn't end up brushing me under the rug too. He said he's going to suggest a full upper and lower gi. Said if I'm going to be under anyhow, may as well check the whole system and not miss anything. I'm absolutely thrilled. Not.

Says my thyroid's larger. He's quite an observant fellow. I've got a thyroid ultrasound scheduled for thursday and he says his buddy the endo is back from vacation so he should be able to get that other test rolling. He was pleased that I found where to get the stuff.

He gave me a really nice meter. Looks like the insurance is going to pay for the strips from now on. Labs have confirmed it. :(

Followup appointment in two weeks so we can get things rolling. In the meantime, he's going to email me the rest of the labs as soon as he gets his hands on them.

You lucky girl!

I got so mad at mine I almost walked out before the visit ended. While in the waiting room, I read an article about how occluded carotids increase the risk of a stroke by a huge percentage, I think it said 45%.
I had a carotid Doppler done in early May. Each time I asked about the result, I was told my carotids were fine. I asked again today, because of the article I had just read. He printed off a copy of his notes on the subject. They are not fine. There's a plaque build-up, just like in the coronary arteries. Luckily, it's mild in both. He also told me that anxiety is creating most of my symptoms. And having an edema is really not so bad. I felt like hitting him over the head. Told him it was not so bad if you weren't the one walking around looking 9 months pregnant. As for my breathing problems, since Advair does not seem to be working, could they be a result of my anxiety? Never mind they've been present since March. There's a word for describing how I feel, and believe me, it's not anxious. lt's plain old p....d off! Anyway, according to his own notes, the evident changes in carotids have not significantly affected the hemodynamic flow. He still would not give me a copy of the actual report. I've just about had it with him. On top of that, he said that my kidney function was very good. This is after a 10 point drop in GFR since last tested. Am I stupid or what? I don't think I ever want to see him again!
Boy, I am so glad I vented! I feel better already. :)

PS. He did send me for a barium swallow x-ray.

kidney function was "very good" - Hey doc who about numbers here. Can the edema be fueling the breathing problems?

I'm not exactly feeling terribly lucky. I will admit I'm finally getting a real good list of diagnosis after 25 years of mucking around but feeling terribly teed off cause if things had been done right to begin with, none of this other stuff would have been added to the list.

If your laws are anything like ours or those of most of the rest of the civilized world, they must provide you a copy of your medical records upon written request. It's your body. Those medical records are part of you.

You've seemed very unhappy with your doctor for a long time. Are you stuck with him or can you find someone who might be better suited to you? There are a few good ones out there. On that point I do feel lucky. Wish I had found him years ago.

The edema can be fueling the breathing problem. You get that much water on the belly and it pushes up against the diaphram. Makes it hard physically to take a deep breath.

And don't feel bad. My kidney function was "very good" too. The only advantage I had was a doc who was willing to listen and learn and admit a mistake. At my small size, those "normal" labs are far from normal. They don't know it all and in a way with all the stuff there is out there, it's kinda hard to really expect them to know it all. They get caught in the trap where the lab says it's normal, therefore it is. Most of the time they'd be right. Being an exception to the rules can be difficult. Go find someone you can talk to. It helps.

Hello, :)

I feel much better today!
You are both right. The edema made my shortness of breath much more pronounced to the point of getting short of breath while walking downhill. It also increased my heart rate. The shortness of breath has been a big problem for me. Recent PF testing concluded that it was consistent with asthma and did not exclude other causes.
As for the labs, I knew this was coming. It's just scary to see increases/decreases where we don't want to see them. BUN, Cr, protein, GFR. Not the doctors' fault. I just don't appreciate being told how great everything is when the numbers show otherwise. I wish I had a doctor who would listen to me and not keep things from me.
I am glad you are getting a complete GI workup. Maybe I will too, someday. Even if it means geting scoped top & bottom. :( The barrium test this morning is a start for me, I guess. I hope I don't have to wait twenty five years to find out what's wrong!

Hey helen -

You didn't tell me I had to fast for the GB Scan! My appt if for Thursday at 5:45 - no food all day and commuting into the big bad city - this is gonna suck!

Have you ever had a procedure that you don't have to fast for? Sorry though. Why in the world would they schedule one of those that late? Did you check to see how many hours are actually required? I wanna say I read 6 somewhere. Perhaps you could have brunch. I've learned to ask cause some procedures call for fasting just because with no rhyme or reason. Other's don't require as long a fast as they say. Nothing after midnight is just a stock phrase.

Wish me luck on getting a luq u/s tuesday. I'm going in to see the gp fasting. Last time he wanted the u/s, they wouldn't do it that day cause I'd eaten and by the time I got it done, someone had managed to screw up the order. Right now, I'd be willing to do almost anything to get rid of this pain. I imagine you probably feel the same way.

I gotta spend 6 hours on the road to get to and from the big city on wednesday just to get my id card renewed so I can continue to get medical care. Now that really sucks.

They said I could have a light breakfast but no dairy - oh yum dry toast. I suppose I can slather on some jam and then it should go down like a breeze. After that it is nothing but h20 for 6 hours and then nothing at all for the last 2 hours.

GOOD LUCK WITH THE U/S

Breakfast at 11:30 sounds good. My third feeding of the day is about 11:00. I could handle that. :D

Oh, suggestion. If they'll let you, take a portable cd player. You get to lay there for about an hour and a half and aren't supposed to chit chat with the tech cause it might move your g/b. Might make the time go faster. Watching the countdown on the timer and watching the black stuff move on the screen gets a bit boring. Dress warm and ask for an extra blanket. They have to keep that equipment cold. At least you don't have to worry about peeing on the table for this one. Just make sure to empty the bladder beforehand.

Cool, I have a lot of audiobooks on my Ipod for the CPA. I can sit there and listen to that and count it as study time.

See? Always ways to make a good thing out of a bad situation. You a little less mad at me now? ;) I'll keep my fingers crossed for a low ef. That's what I wanted so bad on mine. Just rip it out and take the pain with it. Gawd, that would have been nice.

accessn12,

I finally gave up on my internist and decided to travel to NYC to see a renal disease physician about my RTA. So far, he is unsure how to proceed. He thought giving me bicarbonate would help eliminate the headaches and the acidic stench from my body but sar far he'd like to run more tests. I too, was tested for autoimmune disease and I don't have it yet I do have hypothroid--he thinks its related yet he's unsure how. Next step is a sonogram of my kidneys.