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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

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 Amanda Lynne on Fri Nov 07, 2014 2:30 pm

Hi Rachel
It's great that your calcium levels have dropped. Are you experiencing any side effects, were you told if there were any ?
Do you feel any better than you did before.
Love Amanda xxxx
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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 2:50 pm

Hi Amanda! 
I had a dodgy tummy for a few days but that passed quick.
I do feel better not 100 percent but I would like it to drop a little more and see how I feel.
There can be side effects but everyone is different.  I have been okay so far xxxx

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Re: latest cinacalcet calcium levels

Post by Hadleigh on Fri Nov 07, 2014 3:26 pm

What has your pth come back as ? Hopefully it was done !!
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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 3:47 pm

I'm waiting to hear about the pth the dr hadn't looked at it yet so they wouldn't tell me it was definitely done though. 
X

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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 5:11 pm

My parathyroid is 1.1 I've just found out

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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 5:43 pm

I do feel better and am happy with the results of cinacalcet so far. I think I'm having another blood test in 2 weeks time too see what's going on. Thanks for your response Nelly x

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Re: latest cinacalcet calcium levels

Post by Hadleigh on Fri Nov 07, 2014 5:47 pm

Oops my post has disappeared, my fault.

I imagine it will take time for levels to settle on the cinacalcet but it seems to be doing its job which is good news.
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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 6:05 pm

I've forgotten what the range is for pth but my pth and calcium seems more relevant to each other now 
good news x

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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 6:34 pm

Now I'm thinking 1.1 is too low and out of the normal range :/

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Re: latest cinacalcet calcium levels

Post by Tigerlily on Fri Nov 07, 2014 6:46 pm

No, I think 1.1 is OK for a PTH level with a Ca of 2.5, Rachel.

Ca of 2.5 is still middling high, so see how it goes, as the cinacalcet does seem to be doing its job slowly.

Have a rest from it all over the weekend. Feet up, and chill for a bit!

Love from Tigerlily xxxx

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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 6:53 pm

Thankyou Tigerlilly I do feel tired from it all. I emailed my endo today and she's got the results I've said I do feel a little better. My mind is clearer I'm hoping it will continue to go down a little further xx

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Re: latest cinacalcet calcium levels

Post by Kathi209 on Fri Nov 07, 2014 8:07 pm

Forgive me Rach but confused on why the doc put you on cinacalcet? Was there a reason you couldn't have surgery.

I am glad it is working for you and you feel better.  Very Happy Kathi

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Re: latest cinacalcet calcium levels

Post by rach260190 on Fri Nov 07, 2014 8:16 pm

Hi kathi,
Is a tricky one both my scans were negative. ... and pth never abnormally high but innapropriatley high for my calcium.
I have osteopenia and all the symptoms and high calcium. ... i also have thyroid problems which again may have affected the surgeon deciding on surgery as they think once I had started thyroxine that may have just sorted it..... However I think I have a parathyroid problem along side my thyroid issues.
Rachel xxx

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Re: latest cinacalcet calcium levels

Post by Tigerlily on Sat Nov 08, 2014 6:05 am

Hi Rachel

I agree with you that you may have a parathyroid problem alongside your thyroid issues, as a lot of us have here on the forum. There is even some thinking that low thyroid function can be masking HPT in the first place (google: Hyperparthyroidism unmasked by ... and the paper that Simon originally found should come up).

Kathi has asked a very valid question in her post above. As I understand it, Cinacalcet is most often used for people who have been diagnosed with pHPT but who for some reason are unable to have surgery. Before Jasmine's latest scan found a possible further adenoma (hooray!), I recall that she said that she would be facing the prospect of taking Cinacalcet to reduce her high calcium if for any reason FP decided she should not be operated on further.

May I ask if you have had a sestamibi/nuclear scan? If so, did nothing show up on that? Also how old are you? Whereabouts in the country are you? Who is your surgeon and at which hospital?

I recall you saying that your surgeon did not just wish to "dive in" and look for an enlarged PTH gland, but your high Ca and inappropriately high PTH levels would seem to indicate that you have one somewhere. You certainly have the right symptoms.

Something I am wondering is did your endo and surgeon explain what they expected to achieve by your taking the Cinacalcet for a trial period?

There is some concern about using it in the longer term, although I'm sure you have researched this. Dr Norman's pages on Cinacalcet on parathyroid.com don't speak very highly of its use, I'm afraid, but we obviously don't know what your endo/surgeon were thinking when they suggested you should try it.

My fear is (and this is just my non-medically trained opinion from reading your posts about this) that your surgeon might be "treading water" somewhat with your case, and that by using the Cinacalcet to reduce your calcium this might make the problem go away for him. Perhaps he does not do the operation often enough to feel adequately skilled to find and remove something he has not seen on the scans.

I don't wish to interfere in your case, Rachel, especially as you seem to be feeling somewhat better from taking the Cinacalcet, but in your position, I might be thinking of subsequently asking to be referred to someone like FP who is a highly skilled PTH surgeon. Hammersmith Hospital might have more sophisticated US and nuclear scanning equipment too, on which your adenoma might light up like the proverbial Christmas tree!

Can't sleep at the moment, so these are just my early morning thoughts, Rachel.

Love from Tigerlily xxxx

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Re: latest cinacalcet calcium levels

Post by rach260190 on Sat Nov 08, 2014 7:58 am

Hi Tigerlily.
Thanks for your reply. I am going to look for that article and print it off. I am very worried that I do have a pt problem which is just as you say. .... they hope it will just go away.

I had a negative nuclear scan also, which I think didn't help my case. I am 24 and have been feeling unwell for a good few years. Also at 24 I don't think osteopenia is good news! I live in bristol and goto southmead hospital. I have seen the same surgeon as Nelly he was a nice man.
But he said some cases are not as clear cut, and he did not want to create unnecessary lesions.
However I am very worried that if I do have a pt problem I am going to be left untreated.
My endo was the one who suggested the cinacalcet. She wanted me to take it to prove my pth and calcium would go down. She was the one who diagnosed me with phpt. I think it's purely for proof and thays what I'm hoping that I won't be taking it for ever!
Like you said I've heard some bad reviews about cinacalcet and long term use so I'm hoping that it's not for ages!
I'm not sure where to go from here I have another appointment on the 225th with my endo who is very helpful.

I really appreciate your help, anymore advice would be greatly appreciated

I'm always awake early too haha!!!
Rachel xxx

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Re: latest cinacalcet calcium levels

Post by rach260190 on Sat Nov 08, 2014 8:39 am

I was also told to reduce my thyroxine from 50mg to 25 mg as I am now hypothyroid on my latest blood test. 50mg is a small dodose itself so I'm a little confused! Seems I have a long way to go this are going all over the place. Xx

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Re: latest cinacalcet calcium levels

Post by Jasmine2 on Sat Nov 08, 2014 8:54 am

Hi Rachel, yes Tigerlily is right about me maybe having to take Cinacalcet should further surgery not be an option for me, but it was also suggested I take it by my surgeon after my first failed surgery when I was refused a re-op here in the UK due to the risks involved to my one remaining functional laryngeal nerve (hence my trip to Tampa for my second surgery). He agreed I still had pHPT but wanted me to take Cinacalcet for exactly the same reason as yourself, to prove the diagnosis! Dr Norman was very vocal to me about this rationale, saying that Sensipar (Cinacalcet) should never be used to prove a diagnosis and it was a stupid idea (his words), although I wouldn't quote this to your endo Rachel as Dr N does get up the noses of our UK doctors, to say the least! My endo - Dr Miles Levy, who I love - said I could try it if I wanted to but he personally has never prescribed it for any of his patients.

I'm glad you seem to be doing well on it though Rachel, and that you've escaped some of the more horrible side effects, but I hope your endo decides sooner rather than later that it's proved the point and your medics can do some joined up thinking - especially given your young age - and offer you a surgical intervention. Nuclear imaging and Ultrasound should never be used as a diagnostic tool, only as a guide to provide a surgical target for the surgeon.

I agree with Tigerlily in that if your medics decide to drag the 'wait and see' approach on for too long you might want to consider asking your GP for a referral to a parathyroid specialist like FP for a second opinion. At your age 'they' should be considering the long term risks of prolonged parathyroid disease on your future health, and that would be my rationale for a second opinion.

I'm very baffled by the decision to reduce your thyroxine intake if you are hypothyroid?

Jasmine x
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Re: latest cinacalcet calcium levels

Post by rach260190 on Sat Nov 08, 2014 9:07 am

Hi jasmine thanks so much for the reply!
Like you said Im hoping this will be proof!!! And they will help me. I understand some peoples cases are lot more obvious with the positive scans ect. But I do believe I have a problem and my endo also knows this.
Thankfully apart from an upset stomach I've had no negative side effects.

Did yiu experience any bad ones ? Sad
I've also heaRd it can makw the parathyroids sticky before surgery.

Like you said Im not sure why they are hanging about with my age not thats any age is nice to have this problem!

I'm not sure what to sat at my next appointment or what direction to go in.

I was hypothyroid and also and put on 50mg of thyroxine my latest blood show I am now hyperthyroid and being reduced to 25 mg. .... i think my thyroid and calcium issues are putting a spanner in the works with them acting xxx

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Re: latest cinacalcet calcium levels

Post by Hadleigh on Sat Nov 08, 2014 9:11 am

Can i jump in here and say that Mr M is not a "wait and see surgeon". At my first appt with him he told me how annoyed he gets with Endos who don't refer para patients to him for surgery when they obviously have the symptoms. So I believe Rachel you can trust his judgement  at this time as your results plus negative scans are possibly not enough proof as yet.

What are your latest thyroid results ? As your last ones showed you were still hypothyroid which requires an increase in dose. Only if your results show Hyperthyroid would your dose be reduced and in that case your tsh would be well below 1 and your T4 and T 3 would be above the top of the range. So Hypothyroid = reduced dose is not right.

Nelly
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Re: latest cinacalcet calcium levels

Post by Hadleigh on Sat Nov 08, 2014 9:15 am

Ok just read your last post, who decided you were hyperthyoid and on which results ?
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Re: latest cinacalcet calcium levels

Post by rach260190 on Sat Nov 08, 2014 9:21 am

My endo and gp informed me from my latest bloods on Thursday when I had my pth and cal and tsh tested. I'm not exactly sure on the tsh from thursda but i will find out, but about 6 weeks ago my tsh was 3.2 and now I'm hyperthyroid. . I'm really confused.
I understand Mr ms decisions I'm just scared something is going on.
Xx

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Re: latest cinacalcet calcium levels

Post by Hadleigh on Sat Nov 08, 2014 9:32 am

Many endos and GPs keep their patients on low doses and hypo because they get scared when tsh goes to the lower end of the range, they think as long as you are in mid range you are feeling fine, wrong. 

50mcg is a starting dose so it would be very unusual to become hyper on that unless the cin tabs affect thyroid as well.

You really must get your latest results in case your doctors are doing the wrong thing.

The majority of Endos are useless when it comes to thyroid levels and GPs even worse.
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Re: latest cinacalcet calcium levels

Post by Jasmine2 on Sat Nov 08, 2014 9:39 am

I made the decision not to take Cinacalcet, Rachel, and went to Tampa for surgery instead where they use the safer radio guided technique which isn't available in this country.

Nelly it's refreshing to hear of a surgeon who has that approach - Miles Levy is of the same opinion about other endos who don't refer early enough for surgery.

Jasmine x
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Re: latest cinacalcet calcium levels

Post by rach260190 on Sat Nov 08, 2014 9:47 am

Hi jasmine
I see, I felt I had no other choice but to take it and see. Fingers crossed it will continue to work. I'm not sure what the next stage is. And if I will be pescribed it again.
Rachel

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