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latest cinacalcet calcium levels

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latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 1:49 pm

First topic message reminder :

Hi everyone, 
I just received my first calcium level whilst taking cinacalcet. It's now back into the normal range of 2.50 which it has never been in since I have no idea when.  I have been taking cinacalcet for 2 and a half weeks. 
Previously it was 2.71 2.61 2.64 
I have another blood test in 2 weeks before my next endo appointment
rachel x

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Re: latest cinacalcet calcium levels

Post by Little Audrey on Mon Nov 10, 2014 4:49 pm

Yes, I was thinking that exact thing, Tigerlily. Obviously, making switch to Synthroid has done nothing for me, except make me cramp worse! And the edema is now not budging, even taking 3 Edecrin (diuretic) pills a day! We had to increase the dosage because of this. I didn't realize you were only taking T3, but you know, since it is the T3 our bodies actually utilize for so many functions, it would probably make sense if EVERYBODY just took T3. I have actually never heard of anyone taking only T3. I know some people supplement extra T3 with the T4 or T4/T3 combo. I really need to find a good endo who understands all of this. I am very unhappy with my current endo. I know it's time to find another one. I just haven't had the time with all of my other darned appointments and tests! I have visited the STTM site often. I will get back on there and reread things. I am almost certain I need more thyroid medication, and more T3 would make perfect sense! Thanks for the suggestion! Much appreciated!

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Re: latest cinacalcet calcium levels

Post by Little Audrey on Mon Nov 10, 2014 4:52 pm

I am going to get my thyroid levels tested at the end of this week to see where they are. I have a feeling I need to at least increase the Synthroid, if not just increase the T3. I think adding the T3 alone might just solve the problem!

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Re: latest cinacalcet calcium levels

Post by Admin on Mon Nov 10, 2014 5:53 pm

There are quite a few people on T3 only, but it is relatively rare and there is a need to be very much aware of what you are doing, because T3 works much more quickly than T4.

It is more common to have T4 supplemented with a smaller dose of T3, which is more representative of the Thyroid gland's 80% T4/20% T3 output.

Your FT3 and FT4 levels should be a good guide to the right levels of medication for you.

Edwin
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Re: latest cinacalcet calcium levels

Post by Little Audrey on Mon Nov 10, 2014 6:27 pm

Oh, don't worry, Edwin, I am not one of those nuts who self medicates! I am going about this is the correct manner. Actually, I am now looking for another endo.

I also just put a call in to my PA. I noticed the lab slip she gave me is for TSH, free T4 and total T3. I have NO idea why she did not order free T3. I'm so tired of dealing with all of this. It's bad enough we have to suffer so badly, but then we have to continue researching and fighting for cures! I'd love to be able to just rest and let my doctors care for me, but that just is not happening! I had to leave a message on their machine just now because they NEVER answer their telephones! I am waiting for a return call.

I also just called my nephro's office. He seems to be the only one of my doctors who has any idea what he's doing! He is the one who raised my Armour a few months ago, because my free T4 was low, and my free T3 was low/normal. My endo had a fit when he did this. I felt like telling her if she did her job, the nephro wouldn't have to do it for her. It was also the nephro who helped me make the switch from Armour to Synthroid a little over a week ago. I called my endo for help with this, but they also NEVER answer their phones, and they take forever to call back. Actually, one time when I called and left a message, the nurse never did return the call! When I called this time, I left a message. I told them I was very anxious to make the switch to Synthroid because I was worried about the possibility of it causing my neck, shoulder, upper back, and upper arm cramping. Two days later when they still had not returned my call, I called my nephro for help. His receptionist had told me earlier when I talked to her, that if I should decide to have him write the script, to just let them know, and he would be happy to do so. So I did call and ask for his help with this matter. I am going to ask if he would like to continue treating my thyroid or if he would rather me find a new endo. Personally, I would like him to handle it. I trust he would know what he was doing. He originally thought it was the thyroid causing all of this edema. Unfortunately, when he increased the Armour, it didn't help the edema. He then thought he was a bit off track with this. I'm thinking I just need more. But since he is trying to treat the renin and aldosterone, which both regulate our sodium and potassium levels, which in turn regulate the water in our bodies, I think he would be more likely to make the connection with the thyroid. They were out to lunch just now when I called. I will call back in a few minutes.

Yes, it sure would be nice to just lie back and wait for someone to cure me. Ah, heck, I don't want to get lazy! Laughing

Thanks for your help, Edwin. I can use all the help I can get!

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Re: latest cinacalcet calcium levels

Post by Tigerlily on Mon Nov 10, 2014 7:03 pm

I agree with Edwin, Audrey, about perhaps adding some T3 to your Synthroid dosage as a first step.

Just for information, thyroxine seemed to make my neck skin seem to be throttling me when I lay flat in bed, and my whole neck area seemed to enlarge, as well as my tongue.

I started out adding in T3 to the thyroxine (Synthroid) and then moved over to just T3.
I take 20mcg upon waking and another 20 mcg at lunchtime, on my endo's advice, and it seems to work for me.

Good luck, Audrey, keep us posted on progress.

Love from Tigerlily xxxx

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Re: latest cinacalcet calcium levels

Post by Little Audrey on Mon Nov 10, 2014 7:39 pm

I just talked to my neprho's receptionist.  I do LOVE these people!   I told the receptionist that first of all I was calling in to let them know how the new increased dose of the diuretic was working.  I told him it isn't.  I told him the edema looks to be even worse, and my muscle cramps are worse  now too.   I told him they have become unbearable.   He was very concerned.    I told him I am really thinking this edema is being caused from my underactive thyroid.   He said that's a good possibility.   I told him I was wondering if maybe I need more T3, but that I wasn't sure if we should do anything until I get my thyroid levels checked, and I will be doing that on Friday.    He asked me exactly what I was getting checked.  I told him I asked my PA for the scripts for this, but I just noticed today she ordered the TSH, free T4, and total T3.   I told him I want the free T3 tested, and I have a call in to her office regarding this.   He said he was a bit confused as to why I had 2 different doctors working on my thyroid.   Hmmm...........little does he know, my endo also thinks she's in charge of that, but since she doesn't seem to know her nose from her ear, I want the nephro to treat it if he chooses to.    I told the receptionist that I got the script for the thyroid tests from my PA since I saw her last Friday, but she is not going to be treating the thyroid.  I would like the nephro to if he wants the job.    He told me he understand perfectly.    These people are so nice to talk to.  They are very down to earth, and they joke around and laugh with me while we are talking.   So very nice to deal with!      I told him I am also having much more frequent and more intense heart palpitations, which I know could be either hyPO- or hyPERthyroidism, so this might not be much help to the doctor.    I also apologized for bugging them so often with phone calls and told him that once we get these issues figured out, I promise I won't call every 5 minutes.   He laughed.   He said it was no problem at all.

So he told me he will page the neprho, run this all by him, and then get back to me as soon as he can.   I told him I have no doubt that he will, and I thanked him again for being so helpful.    Now, why can't all doctors' offices be run this way?!

I am well aware that Florinef, the medication I take for the low aldosterone, can cause edema and weight gain, but I don't think it can cause cramping.  So even if it is causing me to be a little more bloated and weigh a little more, I know it was not the total cause of the edema, since I had the problem for years before I started the Florinef.    

I will keep you all posted.  I am excited!   At least I have a doctor who is interested in helping me!

Well, after I typed that last sentence, my phone rang.   It was the nephro's receptionist calling back already!   Just LOVE these people!!

He said the doctor would like to know where I am going for my bloodwork on Friday.  He said he would be afraid to increase any medications without seeing my new thyroid levels, and he also would like to check my magnesium and potassium to make sure there is not an issue with those, which might be adding to the cramping.     I don't think they are, but I am very impressed that he doesn't just want to write a script willy-nilly without getting the entire picture first!    He and I think so much alike.  I think that might be why I like him so much.  He has something my other doctors do not have.  He has common sense!

The receptionist told me he will mail the script to my house.  I should have it by Thursday.   That way I can take it with me on Friday when I go for the other bloodwork.    

Now I have to wait for the call from my PAs office to see about getting a script for the free T3.    Then I will be all set for a while.   I guess I'll just keep my electrical stimulator leads attached to my neck and shoulders constantly until we can get this figured out.   I get totally relief when I use that thing.    I feel no cramps at all when it's running.    What a great little invention!

Again, I'll keep you all posted.    I'm a happy camper right now.   I think it will be the nephro who will eventually crack this case!

Tigerlily, thank you so much for your input! I am going to copy and print your comments on here and also do the same with Edwin's comments if that is ok with you both. I am going to take them with me to my next nephro appointment. I do think this man knows his business, but it can't hurt to toss some good tips into the mix. Smile I sure don't know what I would do or where I would be without the help of everyone on this forum and in the support groups! I thank God the computer was invented before I had to deal with all of this $#!+! Laughing

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Re: latest cinacalcet calcium levels

Post by Admin on Mon Nov 10, 2014 7:58 pm

Hi Audrey

You are welcome to make use of my posts, but this could be counter-productive, as docs are not exactly enthusiastic about having advice from non-professionals presented to them.

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Re: latest cinacalcet calcium levels

Post by Tigerlily on Mon Nov 10, 2014 8:24 pm

Bless you, Audrey - I do hope you get some answers soon, and am glad you are feeling somewhat better, even if a little electrified!!

Love from Tigerlily xxxx

PS Amanda - you might get some relief from a TENS machine, too. I took mine on holiday and it was the only thing that gave me any relief when the headache came on. T xxxx

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Re: latest cinacalcet calcium levels

Post by Amanda Lynne on Mon Nov 10, 2014 8:32 pm

Hi Tigerlily
That sounds awful when you lay down, I just get worse neck and headache.
I really think a TENS machine will do me good, thanks for the advice.
Love Amanda xxxx
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Re: latest cinacalcet calcium levels

Post by Little Audrey on Mon Nov 10, 2014 8:42 pm

It definitely should help you, Amanda! As hard and as long as my muscles have been cramping, if this thing can give me relief, I'd be willing to bet my life it would help you too! Please ask your doctors about this.

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Re: latest cinacalcet calcium levels

Post by Little Audrey on Mon Nov 10, 2014 8:52 pm

And thanks, Tigerlily. I continue to pray for us all.

Edwin, I'm sure the doctors are not too happy to be forced to realize others may know more than they do, but after being in this much pain for this long and looking like darned, little blow fish for all the water, I am very desperate! If my doctors would have listened to me and pain more attention tot he material I took with me to all of my appointments, I would have been diagnosed years sooner with the pHPT, and it would have saved me a LOT of agony! I am tired of sitting back and suffering. I will give my nephro every opportunity to figure this out on his own. Actually, I don't think I will even need the backup material with him, but I will be prepared. I am ALWAYS prepared. Smile If my doctors did their jobs, I would not have to do them for them. I need to be well!

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Re: latest cinacalcet calcium levels

Post by Tigerlily on Mon Nov 10, 2014 10:50 pm

Amanda - you can buy them over the counter at Boots for about £12-15.

That's a really good recommendation, Audrey, if it helps you so much.

Love to both from Tigerlily xxxx

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