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Started Cinacalcet

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Started Cinacalcet

Post by Admin on Fri Nov 27, 2015 8:28 pm

With my PTH level over 80, I  have started Cinacalcet 30mg today, so it will be interesting to see what happens to my PTH level and Calcium level.

Interestingly, my Calcium level has been relatively stable for many years (around 2.5), while the PTH has risen from 16.5 in 2010 to 80.5 in 2015.

I have a new problem - pulmonary hypertension was detected when I saw a cardiac consultant last Tuesday, so this needs to be investigated, as it may be getting worse, or better.  This adds to existing cardiac issues: Mitral regurgitation with a dilated LA.  Waiting for an appointment for an isotope scan, which will, hopefully, avoid the use of contrast that will cause the kidney function to drop.  Depending on what shows on this, I may then need to have a CAT scan using Bicarbonate as the contrast. 

My kidney function is still bouncing along near the bottom of its range, but I am managing to avoid dialysis at the moment.  Renal consultant prescribed Cinacalcet last Thursday, so I have to see how I tolerate this and whether the side effects are going to make me feel worse.

Been feeling Hypothyroid recently.  Have increased my T3 by 5mcg, but I feel like it needs a little more.  Will discuss with GP next Tuesday.

In amongst all of this, I am still working (from home, mostly), with an occasional trip to the office in London.
Unfortunately, last week I caught something and had to come home.  Possibly glanduar fever from the symptoms (swollen and tender glands in throat, headache, tiredness and stress).

Every time that I think that some things are improving, new things come-along to cause further disruption.

Edwin
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Re: Started Cinacalcet

Post by Hadleigh on Fri Nov 27, 2015 8:41 pm

affraid Rolling Eyes scratch
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Re: Started Cinacalcet

Post by Amanda Lynne on Sat Nov 28, 2015 7:29 am

Goodness Edwin you are going through so much and still working, pretty amazing.
I hope the cinacalcet doesn't cause you problems and may even make you feel better. Are all of your problems connected do you know what started your problems ?
You and Nelly have been so supportive to me since you started this forum and I don't think I would have managed to finally get the trial of thyroxine with out you helping to keep me pushing for it.
I hope you get some improvements instead of things keep going wrong, you deserve this more than anyone.
I've had the sore throat and raised glands along with flu symptoms for about 4-5 weeks now it seems to go and come back again.
Love Amanda xxxx
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Re: Started Cinacalcet

Post by Hadleigh on Sat Nov 28, 2015 8:16 am

Amanda flu like symptoms coming and going are common in hypo people. I have had the same for several months now and I'm getting cheesed off with it, quite often kicks off if we get cold, tired and have overdone things.

I don't think Levo is enough for me now but I'm 101% sure my GP won't give me T3, I asked before and they said no, not sure how they justify that seeing as Edwin gets T3 prescribed by them ! might try again one day but right now haven't go the energy for a fight Neutral

Hopefully once your Levo kicks in you will feel tons better Smile

Nelly xx
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Re: Started Cinacalcet

Post by Amanda Lynne on Sat Nov 28, 2015 8:59 am

I thought it was unusual, I never usually get colds and if I do they are gone in a week. Glands under chin feel very sore and throat feels swollen still.
I've taken 1st tablet and waited an hour before I had a cuppa Very Happy
It seems ludicrous that you can't get the T3 do the GPs not want people to get better ? Surely we would cost the NHS less then.
I hope you do get it, this flu feeling all the time is horrible and you two are such troopers helping us all out you don't deserve all this rubbish you are going through.
Love Amanda xxxx
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Re: Started Cinacalcet

Post by Admin on Sat Nov 28, 2015 2:56 pm

The problem for GPs and Endos is that they are obliged to follow the BTA guidelines, otherwise their careers are put at risk.

Unfortunately, those of us who have put a lot of time into researching patient forums, reading the numerous medical papers and other articles now realise that the BTA guidelines are misleading, inadequate and somewhat dishonest.

The irony is that there are other medical specialisations that have a better understanding about hypothyroidism and its treatment than most GPs and endos, which is frustrating and somewhat bizzare.

There is one UK thyroid forum with over 33,000 members, and another UK forum with over 5,000 members.  The membership numbers are continually increasing as more and more people are looking for solutions to hypothyroid symptoms that have been ignored or mis-disgnosed by their GPs and endos.

The result is that there's a group of hypothyroid patients who are inadequately treated, or even undiagnosed by GPs and/or endos, and another group who, with the help of patient forums, have effectively given-up with the NHS and self-medicate, the majority of whom are mostly successful in treating the symptoms of hypothyroidism.

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Re: Started Cinacalcet

Post by Amanda Lynne on Sun Nov 29, 2015 9:30 am

It really is a bizarre situation.
A xxxx
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Re: Started Cinacalcet

Post by Little Audrey on Fri Dec 11, 2015 6:01 pm

Holy crap, Edwin!!    Even more to deal with than when I was here last.   I'm so sorry to hear of all of this.   Crying or Very sad

I am a bit surprised as to why your doctors are trying to lower your calcium, when your PTH is so high, and it is so obvious that you have pHPT.    You obviously need parathyroid surgery.    Is there some reason they are opting to avoid surgery?   Or are they just not bright enough to diagnose this?

I am worried myself about pulmonary hypertension now, as I have just started taking a daily antibiotic for the UTI situation, and that is one of the side effects.    I will post more about this later.     I am unsure how they treat pulmonary hypertension.  I haven't researched that yet.   Too busy with Christmas stuff right now.   I will look into all of this after Christmas.

Glad your kidneys are not worsening, and you are able to avoid the dialysis for now!   That's good!   

I do hope you can continue to get answers and correct some of these issues!

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Re: Started Cinacalcet

Post by Admin on Fri Dec 11, 2015 6:34 pm

My calcium is going to be monitored closely since starting Cinacalcet and, if it drops too much, my Alfacalcidol will be increased to compensate.

I've had bleeding problems after three surgeries this year and this is not helped by high Urea, so Cinacalcet was seen as the best non-invasive solution, especially as I have had such a crap year with post-surgery bleeding causing low Hb and being on the verge of needing Dialysis for several months.  Oh, and pulmonary hypertension has also ruled-out any surgery.

Having cleared the virus that wiped me out last month and changed the timing and levels of my T3 and T4 medication, I have been feeling remarkably well (by my standards) since last Friday.

My October blood test looked good in that my renal function had improved, but it dropped again in November, probably because I had a virus.  Fingers crossed for the next blood test on 21st December.

At the moment, i have a lot of uncertainty about how serious the effect of pulmonary hypertension.  Hopefully, will learn more following my NM Lung perfusion scan next Monday.  If this does not show anything, the next step will be a CTPA scan.

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Re: Started Cinacalcet

Post by Little Audrey on Tue Dec 15, 2015 5:24 pm

Well, that explains your doctors' reluctance in performing parathyroid surgery.   Thank you for clarifying that, Edwin.   What a shame.   So you pretty much are stuck between a rock and a hard place here.    Don't know why things have to get so complicated with our health issues!   It amazes me how some people have a problem, treat it, and then they are just fine.   

I too am interested in the pulmonary hypertension, as my urologist just started me on a daily antibiotic for the UTI situation, and one of the possible side effects is pulmonary hypertension.   That's just what I need.   Another problem!!     Looks like we might be learning about this together.  

I do hope your renal function improves again.    Looking forward to seeing the new lab results soon.

Glad you're feeling better after dealing with that nasty virus!!    As if you don't have enough problems!

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Re: Started Cinacalcet

Post by Admin on Tue Dec 15, 2015 11:29 pm

The NM lung perfusion scan did not highlight any blood clots, so further investigation is needed, probably a CT scan next.

My next renal and calcium results will be next week, following a blood test next Monday.

Edwin
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Re: Started Cinacalcet

Post by Little Audrey on Sun Dec 27, 2015 6:59 pm

Any new results yet, Edwin?   Very anxious to hear!

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Re: Started Cinacalcet

Post by Admin on Sun Dec 27, 2015 8:58 pm

From last week's blood tests, my Calcium has dropped from around 2.5 to 2.2.
I don't appear to have any hypocalcaemia symptoms.
As the calcium level is now close to the bottom of the range, I have made a small increase in my Alfacalcidol.
 
Interestingly, my calcium has been around 2.5 for a very long time, and did not appear to have increased with the increase in PTH.

Renal blood tests are every month, but I think that the next PTH test will be in February, with my next appointment at the Renal Clinic.

Unfortunately, Phosphate has increased a little, so I am being more careful with my diet, Hb has dropped to 95, Creatinine has increased to 458, both of which are not good news (eGFR down to 11).

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Re: Started Cinacalcet

Post by Admin on Sat Jun 11, 2016 6:58 pm

A quick update - My PTH has dropped from 80 to 20.5 on Cinacalcet and my calcium has remained stable, so no need to consider surgery.

My new challenge is an off the chart level of Prolactin, which is normally caused by a benign adenoma on the Pituitary gland, so an MRI is planned.
About to start Cabergoline to reduce the Prolactin.

Just about eliminated hypothyroid symptoms after several years of trial and error with varying doses Levothyroxine and Liothyronine. Have learned a lot about Hypothyroidism along the way, especially the scandal of doctors being taught that they can diagnose and treat Hypothyroidism by TSH and FT4 blood test results only.

Started haemodialysis in February and generally feeling better that last year.

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Re: Started Cinacalcet

Post by Little Audrey on Tue Jun 14, 2016 5:59 pm

Well, Edwin, I'm VERY happy they've gotten your calcium down so nicely!    Do you feel much improvement with the symptoms?

Sorry to hear about the elevated prolactin level.    I guess surgery will be in order if an adenoma is revealed during the scan?     I am not familiar with symptoms of elevated prolactin.    Are you dealing with any?

VERY glad to hear the thyroid is now under control for you!!    It is always SO VERY nice when something goes right!!     My endo STILL insists I am hyPERthyroid because my TSH is too low.   She just does not get this!    I asked her if she knows of anyone who is hyperthyroid who has a FT3 midrange, and a FT4 low/normal.  She didn't answer that.    I asked her if she knows of anyone who is hyperthyroid who can't lose weight eating 1000 calories a day, while being very active and working out every day.   She didn't answer that either.    I asked her why I don't have ANY symptoms of being hyperthyroid.   She didn't answer that either.   Oh, well, she said the severe weakness and shaking I was experiencing a couple of months ago was from being hyper.   I told her I was pretty sure it was from having adrenal insufficiency, since it all resolved once I started treatment with cortisol.   She said nothing.     It's hard enough trying to get all of our ducks in a row, and it sure doesn't help when doctors don't have a clue! 

Also very glad the dialysis is helping!   

I have a couple of new issues I'm working on now.  I will post about them a little later. 

I'm VERY glad you're feeling better!!     Hopefully, this will continue!

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Re: Started Cinacalcet

Post by Admin on Wed Jun 15, 2016 12:12 pm

Thank you Audrey.

Would you believe that I have never experienced any obvious symptoms from having such a high PTH level?

Consequences of the high Prolactin level is a pair of nipples that hurt when inadvertently touched and slight swellings, giving a very small pair of breasts!
I will have an MRI scan to confirm the expectation of a benign Pituitary adenoma and I have been prescribed Cabergoline to reduce the Prolactin level.

From my experience, the only way to deal with Hypothyroidism is to take control of your medication and not expect or rely on most docs to understand enough about this disease.  Anyone that believes that blood tests alone are the only way to manage this disease are pissing-in-the-wind, in my opinion.
I reckon that blood tests (as long as FT3 is tested) is 50% and symptoms is 50%.  There is no blood test that can measure the amount of T3 that is being absorbed and it is low T3 absorption that is the cause of hypo symptoms.

Edwin
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Re: Started Cinacalcet

Post by Tigerlily on Sat Jun 25, 2016 11:54 am

Hi Edwin

I've been away a long time and this is my first pop back onto the forum after dealing with other health issues. I will post about them separately.

But I'm so pleased to hear that your Ca is down and your PTH level has also been reduced. My idiot-endo (we all seem to have one along the way, don't we?) told me that she didn't care if my PTH was 7, 9, 12 or 15 as long as the calcium was "within range". I had read however that a prolonged high PTH level was a risk factor in itself for heart disease, so I still fear for any poor HPT patients she is dealing with!

Sorry to hear about the prolactin level and if it is a pituitary adenoma I hope that they can get that fixed for you soon.

So glad to hear that you are feeling better generally, though - so pleased.

Best of Wishes, Tigerlily.

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Re: Started Cinacalcet

Post by Admin on Mon Jun 27, 2016 11:24 am

Thank you Tigerlily

A consequence of high PTH (80 in my case) for people with CKD is high phosphate which is why Cinacalcet is used and works for me, along with being selective with food and drink, which is not a big deal for me.  Also taking a phosphate binder.

I seems that Renal consultants understand more about the implications of PTH and importance of calcium and phosphate levels than some Endos.

(typed slowly, left-handed while on dialysis).

Edwin
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