Checking toxicity level while on TOBI

[LouLou]

I'm having a bit more than usual ringing in my ears. I'd like to get my blood levels (serum?) checked to see what my levels are like and if they are anywhere near a dangerous level for me or my baby. I know there is always a risk of doing Tobi while pregnant but for me the benefits outweighed the risk. I want to see if I am at 'normal' Tobi levels or if my body is a bit more concentrated. You see I'm sure the PI tests that were performed on what level gets into the blood stream with inhalation Tobi were performed on computers or people that don't have hemoptysis. Bleeding in my lungs allows direct access for the Tobi to hit my bloodstream.

Thoughts on what test I need to order and what the precedure would be? Peak only sufficient? How fast after a treatment would I need to have the blood drawn?

 

[LouLou]

I'm having a bit more than usual ringing in my ears. I'd like to get my blood levels (serum?) checked to see what my levels are like and if they are anywhere near a dangerous level for me or my baby. I know there is always a risk of doing Tobi while pregnant but for me the benefits outweighed the risk. I want to see if I am at 'normal' Tobi levels or if my body is a bit more concentrated. You see I'm sure the PI tests that were performed on what level gets into the blood stream with inhalation Tobi were performed on computers or people that don't have hemoptysis. Bleeding in my lungs allows direct access for the Tobi to hit my bloodstream.

Thoughts on what test I need to order and what the precedure would be? Peak only sufficient? How fast after a treatment would I need to have the blood drawn?

 

[LouLou]

I'm having a bit more than usual ringing in my ears. I'd like to get my blood levels (serum?) checked to see what my levels are like and if they are anywhere near a dangerous level for me or my baby. I know there is always a risk of doing Tobi while pregnant but for me the benefits outweighed the risk. I want to see if I am at 'normal' Tobi levels or if my body is a bit more concentrated. You see I'm sure the PI tests that were performed on what level gets into the blood stream with inhalation Tobi were performed on computers or people that don't have hemoptysis. Bleeding in my lungs allows direct access for the Tobi to hit my bloodstream.

Thoughts on what test I need to order and what the precedure would be? Peak only sufficient? How fast after a treatment would I need to have the blood drawn?

 

[Debi]

This is really something I think you need to check with a medical professional. Your situation is so unique, and I think you want to get it right the first time, not wait for a number of us non-pros to give you a variety of different guesses. Best wishes!

 

[Debi]

This is really something I think you need to check with a medical professional. Your situation is so unique, and I think you want to get it right the first time, not wait for a number of us non-pros to give you a variety of different guesses. Best wishes!

 

[Debi]

This is really something I think you need to check with a medical professional. Your situation is so unique, and I think you want to get it right the first time, not wait for a number of us non-pros to give you a variety of different guesses. Best wishes!

 

[KMV77]

I was talking about the crnp at my Dr's office about this the other day. I just had my pic pulled, but was on iv tobi for 1.5 months. I just started getting a little ringing in my ears on tuesday. they were drawing troughs on my every week. The crnp was thinking of stopping my inhaled month early (i was doing that too). The inhaled tobi puts a small amount in the bloodstream, but not very much, it wouldn't really affect the trough according to the visiting nurse I had that came to draw my blood. I've never had the ringing from the inhaled tobi, just the iv. Try calling the doc and see if they can take a tobi level. How many times a day are you doing it?
Kevin

 

[KMV77]

I was talking about the crnp at my Dr's office about this the other day. I just had my pic pulled, but was on iv tobi for 1.5 months. I just started getting a little ringing in my ears on tuesday. they were drawing troughs on my every week. The crnp was thinking of stopping my inhaled month early (i was doing that too). The inhaled tobi puts a small amount in the bloodstream, but not very much, it wouldn't really affect the trough according to the visiting nurse I had that came to draw my blood. I've never had the ringing from the inhaled tobi, just the iv. Try calling the doc and see if they can take a tobi level. How many times a day are you doing it?
Kevin

 

[KMV77]

I was talking about the crnp at my Dr's office about this the other day. I just had my pic pulled, but was on iv tobi for 1.5 months. I just started getting a little ringing in my ears on tuesday. they were drawing troughs on my every week. The crnp was thinking of stopping my inhaled month early (i was doing that too). The inhaled tobi puts a small amount in the bloodstream, but not very much, it wouldn't really affect the trough according to the visiting nurse I had that came to draw my blood. I've never had the ringing from the inhaled tobi, just the iv. Try calling the doc and see if they can take a tobi level. How many times a day are you doing it?
Kevin

 

[LouLou]

I agree Debi but I wanted to know what I wanted when I called the 'medical professional.' I've been down this type of road enough to know what my doctor would say and quite possibly most doctors. "Ah that's not necessary." "What's that information going to tell us."

I called my clinic this morning and told them about the ringing and that I wanted to get my blood levels checked. I don't know if medical professionals are just all about saving money or what. They said that I should stop Tobi since I've been on it for 2 weeks and be off of it for two weeks and start back up in two weeks. 2 weeks on 2 weeks off. They said they have other patients that 'tolerate' it better this way too. They said the blood test was unnecessary. I told them I wanted both to stop Tobi and to get the blood test. They said okay then. By now they are getting used to me strong arming them. With my cf its my way or the highway folks.

 

[LouLou]

I agree Debi but I wanted to know what I wanted when I called the 'medical professional.' I've been down this type of road enough to know what my doctor would say and quite possibly most doctors. "Ah that's not necessary." "What's that information going to tell us."

I called my clinic this morning and told them about the ringing and that I wanted to get my blood levels checked. I don't know if medical professionals are just all about saving money or what. They said that I should stop Tobi since I've been on it for 2 weeks and be off of it for two weeks and start back up in two weeks. 2 weeks on 2 weeks off. They said they have other patients that 'tolerate' it better this way too. They said the blood test was unnecessary. I told them I wanted both to stop Tobi and to get the blood test. They said okay then. By now they are getting used to me strong arming them. With my cf its my way or the highway folks.

 

[LouLou]

I agree Debi but I wanted to know what I wanted when I called the 'medical professional.' I've been down this type of road enough to know what my doctor would say and quite possibly most doctors. "Ah that's not necessary." "What's that information going to tell us."

I called my clinic this morning and told them about the ringing and that I wanted to get my blood levels checked. I don't know if medical professionals are just all about saving money or what. They said that I should stop Tobi since I've been on it for 2 weeks and be off of it for two weeks and start back up in two weeks. 2 weeks on 2 weeks off. They said they have other patients that 'tolerate' it better this way too. They said the blood test was unnecessary. I told them I wanted both to stop Tobi and to get the blood test. They said okay then. By now they are getting used to me strong arming them. With my cf its my way or the highway folks.

 

[LouLou]

Kevin, I do inhaled twice a day. Have since Tobi came out and before that was inhaling the tobra for IV back in the 80's and early 90s. I think I recall we go to the same center. Presby right? Not sure if you see Denis or Holsclaw though. I see Holsclaw. Anyway Marianne agreed to writing the script for the blood draw when I pointed out that I might not be having a typical level since I deal with hemoptysis. TOBI DIRECTLY INTO MY BLOODSTREAM VIA BY LUNGS. She said, ah good point. Oh and next time you are on Tobi make sure they are really doing a peak and not a mid level and predicting what it was at peak. Got to advacate for yourself I find in the medical world these days. It's not a knock at my present center it seems to be just the way it is.

 

[LouLou]

Kevin, I do inhaled twice a day. Have since Tobi came out and before that was inhaling the tobra for IV back in the 80's and early 90s. I think I recall we go to the same center. Presby right? Not sure if you see Denis or Holsclaw though. I see Holsclaw. Anyway Marianne agreed to writing the script for the blood draw when I pointed out that I might not be having a typical level since I deal with hemoptysis. TOBI DIRECTLY INTO MY BLOODSTREAM VIA BY LUNGS. She said, ah good point. Oh and next time you are on Tobi make sure they are really doing a peak and not a mid level and predicting what it was at peak. Got to advacate for yourself I find in the medical world these days. It's not a knock at my present center it seems to be just the way it is.

 

[LouLou]

Kevin, I do inhaled twice a day. Have since Tobi came out and before that was inhaling the tobra for IV back in the 80's and early 90s. I think I recall we go to the same center. Presby right? Not sure if you see Denis or Holsclaw though. I see Holsclaw. Anyway Marianne agreed to writing the script for the blood draw when I pointed out that I might not be having a typical level since I deal with hemoptysis. TOBI DIRECTLY INTO MY BLOODSTREAM VIA BY LUNGS. She said, ah good point. Oh and next time you are on Tobi make sure they are really doing a peak and not a mid level and predicting what it was at peak. Got to advacate for yourself I find in the medical world these days. It's not a knock at my present center it seems to be just the way it is.

 

[LouLou]

One other thing the clinic suggested is for me to go to an ENT and get my hearing checked. Probably a good idea. It's been about 5 years since I've had it checked LOL.

 

[LouLou]

One other thing the clinic suggested is for me to go to an ENT and get my hearing checked. Probably a good idea. It's been about 5 years since I've had it checked LOL.

 

[LouLou]

One other thing the clinic suggested is for me to go to an ENT and get my hearing checked. Probably a good idea. It's been about 5 years since I've had it checked LOL.

 

[KMV77]

Hey I didn't know you went to presby, or atleast I don't recall reading it, or it just didn't stick in my brain. I see Holsclaw. It was Marianne I was talking about the tobi with yesterday.
Kevin

 

[KMV77]

Hey I didn't know you went to presby, or atleast I don't recall reading it, or it just didn't stick in my brain. I see Holsclaw. It was Marianne I was talking about the tobi with yesterday.
Kevin