Re: Tipper - adrenal tumor/breathing issues
Oh Patti, So sorry about Grace, I was hoping she would pose no risk to your other cats. What a shame. I will hope a good and loving home can be found for her.
As for the thyroid..the are things that differ from Cushings, low blood pressure and slow heart rate are common in low thyroid but usually the opposite in Cushings. I know you worry Tipper has a rapid heart rate and high blood pressure, so you may want to watch that the medication doesn't increase these.
Barbara
Re: Tipper - adrenal tumor/breathing issues
Hi Everyone:
My heart is heavy as I post today. I was up most of the nite thinking about poor Grace. I can't help but feel an overwhelming sadness for her. I was going to try a different rescue today and when we got up it was snowing so we won't be doing this until the snow is done. Tipper had some of her episodes last nite and was all around the bed moving all nite long every few minutes. After discussing this with Glynda she thinks it may be Tipper's cortisol rising at nite. Before when she was on a split dose I always gave her the higher portion in the morning. I am thinking she should get the higher portion at nite instead. I have taken her off the Vetoryl as I am afraid of that pre number and my vet never called me about new dosing from Dechra. Tipper's safety is paramount here so I need to know she will be safe until I get some good solid answers. Glynda is trying to get me some help with this too. I am going to call Dechra and tell them my vet never called me and ask for help. I just can't believe I pay him all this money, he knows she is low and he just goes off until next week and does not bother about it. I am thinking after discussing Tipper in length with Glynda that Tipper is having muscle tremors from the Vetoryl. Now that does not mean for I am suggesting it is bad and for anyone not to use it, as Tipper needs it to live so I will have to deal with the side effects. I am hoping to get things straightened out with Jean Dodds today as they emailed me and the site was not working properly and they lost all my info on Tipper so I must do it all over. That is ok as I need the help for her. So I will not be posting on your threads until later as I must do this while Tipper is resting. Blessings
Patti
Re: Tipper - adrenal tumor/breathing issues
Oh Patti, I am so sorry that you are having such a tough time!
I do have a special request, though, and that is for you and Glynda to please carry on at least some portion of your conversations about Tipper here as public replies. That way, you will not have to summarize them all after-the-fact and we can follow your decisions as you are actively making them. I am starting to hesitate to make suggestions here, for instance, because I don't know whether it's something you two have already discussed and discarded. :o
Marianne
Re: Tipper - adrenal tumor/breathing issues
Marianne:
I can't post all the conversation with Glynda as we talked on the phone. I will however try to catch everyone up so they understand what is going on. I know I did not want to deal with another variable as Tipper is on thyroid meds and has a low pre number, isn't feeling well and is exhibiting thyroid symptoms. Glynda and I went over all of Tipper's thyroid. Glynda said her numbers looked good to her, but wants me to use Jean Dodds if I can to get her expert opinion. Tipper has been running low on her T4 for the last 12 blood panels and now on this one did go low. As I was noticing these symptoms in here that is why I had the thyroid panel done as I have been saying she has been off and I know it, she is not feeling well. I am surmising that she is right on the fence of starting to go down hill, but I know her so well I caught the symptoms in an early stage. I told Glynda I read Jean Dodds ahd said that some dogs at a slight low need some help. Tipper has shown Cushings symptoms that are really strong. So I am thinking that is why she is exhibiting these thyroid symptoms early - she is just like that with illnesses. You see it right away. So I made an application to Jean Dodds and will wait to see what her expert opinion is. I am doing this to keep Tipper safe. in all the craziness of her ups and downs her safety is paramount to me. Knowing that I feel this way Glynda old me if it were her dog she would stop the Vetoryl too. I was ready to put it back in the cupboard the other day and then gave it to her, but felt uneasy. I have not heard from my vet which is no surprise. Glynda is trying to help me on her end by getting answers to why Tipper is running low on her pre number. So until I get some answers from someone like and endocrinologist or Dechra that is dealing with this and knows precisely what to do I am not dosing her. Her dosage has been changed and the poor thing has had over 13 ACTH's which have cost fortune, and look at the agony she has endured. It makes sense to me that I have taken her to every specialist under the sun in an effort to make sure she has the best care, why would I then throw caution to the wind with these meds and chance something happening to her especially with the vet I have?? I will tell everyone what is going on when I have my consult with Jean Dodds. I have asked her to consult only with me because of my vet situation. I want to make sure Tipper is on the right drug, and the right dosage for her thyroid. This has seemed to be helping her. Also her dosage with Vetoryl must be looked at due to the fact that Glynda feels her cortisol must be going higher at nite and that is what all the moving about the bed is from. So if she is put on a split dose does Dechra think the higher portion of it should be at nite, as the even split has not worked for her. I am trying to keep her post lower to stop her symptoms with out lowering her pre number. I did advise jean Dodds that Tipper does have both kinds of tumors and the results of her latest stim. She may have some suggestion on that you never know. Thank God for this forum and all of your help. Tipper never has a straight forward case of anything so doing anything with her requires a lot of looking into. Glynda has been a God send to give me her valuable time to help Tipper. I need her input as she has very valuable experience that I do not. Ultimately this is my decision I know, but to have expert guidance is like gold. We are waiting to see who gets back to us first with some concrete answers. I am calling Dechra when I am done here and telling them the situation with my vet and asking for help, as Tipper's symptoms come back quick, and strong and I do not want her going thru that more than necessary. I feel there is a key to keeping Tipper's number in balance and I need one of these experts to help me with it, as I know all this up and down in her numbers cannot be good for her. Blessings
Patti
Re: Tipper - adrenal tumor/breathing issues
I have not posted anything here yet because there was nothing new to report. I'm waiting to see if Dr. Peterson will respond to my question regarding Tipper's low basal cortisol. I have no answer for Patti but if Tipper were my dog, I'd be very concerned about continuing treatment until I got some reassurance from somebody like Dechra, Dr. Peterson or Dr. Bruyette. It's a 50/50 proposition with Dr. Peterson when you post on his blogs but I'm keeping my fingers crossed and if he does respond, I'll immediately post his response. I did recommend that Patti contact the person she has a good relationship at Dechra and tell her she's very concerned about continuing to dose Tipper and that her vet is not responding to her. Hopefully that might get Dechra to give her some guidance. I also told her that she shouldn't screw around with dosing until she gets some guidance from an experienced professional.
Re: Tipper - adrenal tumor/breathing issues
Regarding the low basal and possible shortcomings of ACTH testing for monitoring trilo dosing, here's one of the comments I was looking for earlier:
Quote:
• Monitoring of trilostane therapy with the ACTH stimulation test may be difficult because ACTH can override the competitive inhibition of steroidogenesis.
I'm not sure I understand the point of the comment, but is it perhaps that the stimulated (post) result is not necessarily an accurate reflection of the actual ongoing adrenal reserve of a dog on trilo (the "real" daily reserve may be lower) and that's why Dechra is becoming more concerned about lower basals even though the "post" seems OK. I dunno -- maybe someone else here can explain what the comment means.
One last question for you, Patti, and then I'll check out until you gather your additional info. Did your vet give you a written endocrinological interpretation from Michigan State that accompanied the raw test results? I surely hope he requested that, although it might have involved an extra charge.
Re: Tipper - adrenal tumor/breathing issues
That may be the case, Marianne. I know Zoe's IMS was very concerned Zoe did not have enough adrenal reserve after I told her how Zoe reacted after her ER visit and then when we got her blunt ACTH test results back after lowering her dose she was really concerned about it.
Re: Tipper - adrenal tumor/breathing issues
First off before I forget, no the vet never got one Marianne. I am in the process of getting all my info on Tipper to Dr. Dodds so I have limited time here. The other very important thing to note is I just had very lengthy conversation with Dechra. Before I explain that just know they told me my vet never called them!! So you know I am not happy right now, but it is par for the course with him. After them reviewing extensive notes on Tipper and all the dose changes we gave made and the problems that have occurred after stopping her Vetoryl this is what was decided between all of us. First they do not want her Vetoryl stopped because the last time her clinical symptoms were so quick and so bad on return they do not want her cortisol climbing that high. They want me to dose her with one morning 20mg dose until I am able to get the 5mg from Diamondback. When I get that I am to give her 15 in the morning and 10 at nite. that way if she is on 20 now her cortisol should not drop, but will not escalate out of control either. That way it does not have to be knocked down too far when she starts on a smaller total dose than what caused all this(28). When we have taken her off in the past and her cortisol shot up too high and then she was put on a lower dose because the pre was low ,it was not enough to bring her post number down to where she was not having terrible clinicals. So when I get the 5mg she will get 15 in the morning and 10 at nite and an ACTH in 2 weeks as my stupid vet did not know to do. I told them she cannot sleep at nite and wouldn't the bigger dose be better at nite and they said no because you must do the ACTH after the higher dose and that would mean she would have to have an ACTH at 10 or 11 at nite and my vet is never going to do that! If this does not work we may do 12/12 split with the 2 mg being trilostane. When Tipper got all 30mg in the morning this not sleeping all nite was not a problem, but that can no longer be because of her pre number. I told Dechra about my vet and they did not comment on him other than to say he never called. He is really a terrible person to do this to Tipper. It will all come back to him sometime. They were not going to help me until I practically begged and said my vet isn't interested in this and I have no other help from an expert and this is a tricky situation. They assured me she is ok on the 20 mg for now. It is ok to dose her on 20 and when the 5mg comes to start the very next day on 15/10. They said the 20 will keep her in a good place to stave off the symptoms as she does get crazy, and will probably really have a hard time at nite until the other mg comes. This is the only combo we have not tried. I told her I do not want to subject Tipper to all these ACTH tests as she has really had enough and we need to get this right so she stops suffering. I want to know what everyone thinks of this especially Marianne and Glynda as you two have been helping me with this problem. I will take Jean Dodds word as gospel when she tells me what is going on and follow what she tells me on the thyroid. A neighbor came and asked me for a picture and description of Grace to take to work, she has cats and many people she works with love them and maybe she could get Grace a home. So I made a flyer and description of her and what is expected of the person who wants to give her a home, I want to put it all right out front so there is no misunderstanding that only the right person will get her and what I require to relinquish her. I am hoping this is not too convoluted and I explained it well enough. Please let me know what you think I value all you input to help my girl. Blessings
Patti
Re: Tipper - adrenal tumor/breathing issues
Hey Patti, I totally defer to Dechra at this point and will keep my fingers crossed that this combo will finally be the right one for Tipper.
All fingers crossed for Grace, too.
P.S. Did you tell Dechra that you have started the thyroid med? Also, I am somewhat confused -- was Tipper's Michigan State profile truly below normal range, or just in the lower part of normal?
Marianne
Re: Tipper - adrenal tumor/breathing issues
Her test from the vet was below normal. She was low normal on the Michigan test. This is where Dr. Dodds says some of these dogs need help in this range.Glynda said maybe she likes to see them come up in the middle . I would think that especially since Tipper has so many symptoms this may be true, we will see soon. Did what Dechra said to do makes sense to you? Blessings
Patti