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I'm back too......

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I'm back too......

Post by Jasmine2 on Thu Jul 23, 2015 2:29 pm

Hi everyone

I'm so sorry if I appear to have abandoned the forum ..... I haven't - just that I was so fed up and disenchanted with my whole darn pHPT saga I had to take a breather from some of my online resources. Just didn't have the energy or the wherewithal to keep up the facade of 'I'm doing OK with it all ...' when I really wasn't....

So....not sure where I was up to in the 'J word' when I last posted.....? You might recall I was diagnosed with persistent disease after I'd been to Tampa, had a large adenoma removed but one was missed so I was in the process of following that up. I saw Fausto Palazzo a year ago with a view to him attempting a third surgery, but he adopted a cautious approach because of the risks involved and referred me to his colleague, Dr Jeremy Cox, at St Mary's for a more comprehensive work up, which I'd never really had before. So since seeing him back in January I've had a 4D CT, ultrasound, venous sampling and parathyroid angiography, all of which have localised the missing adenoma and concur as to its location. I've also had another DEXA which shows deteriorating bone density in my lumbar spine.

I'm a tad worried that the 4D CT also picked up a nodule at the base of my left lung which, although no-one seems too worried about it, got me a referral to the respiratory team also, and I'm now having three monthly scans to monitor it.

At my next appt with JC in April, he and FP had decided it would be a good idea to see if having a lower calcium would help my symptoms and make me feel better so, with some reservations, I agreed to take a three month course of Cinacalcet. I was feeling pretty crappy at the time and the thought of another three months in the Limboland cafe filled me with doom and gloom but I had no choice, if I wanted FP to try and help me I had to play by the rules. Anyway, after a week or two coping with Cinny side effects I started to feel better....and then started to feel MUCH better and my calcium fell to 2.44, the lowest it's ever been since testing began back in 2001! I finished the course a week ago and sadly the crappy symptoms are starting up again, but at least we've achieved what we set out to do - see if I felt better with lower calcium....and I did!

I see JC again on 4th August, after which we will have the discussion with FP about a third surgery. Got everything crossed for a good outcome! Watch this space.......I won't leave it so long this time!

Jasmine x
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Re: I'm back too......

Post by Hadleigh on Thu Jul 23, 2015 5:29 pm

Its great to hear from you Jasmine, wow what a lot has happened to you but it sounds like you have the right experts on the job. Is the offending little blighter in an odd position ? just wondering if Tampa should have spotted it.

Good news the Cinacalcet worked so well, gave you a bit of a break from feeling crappy, will they give you more while they work out what to do ?

Do keep us posted on your progress, fingers crossed for you Smile

Nelly
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Re: I'm back too......

Post by Jasmine2 on Thu Jul 23, 2015 5:52 pm

Hi Nelly

Yep, I had a large adenoma removed at NPC but they missed one.....! I'm not critical of Dr Norman though as he made it quite clear beforehand that he most likely wouldn't be able to ckeck, or even find, the other glands due to all the scar tissue from previous ops, including the thyroidectomy which b*ggered up one of my recurrent laryngeal nerves and altered the anatomy in my neck somewhat!

Apparently, this little punk is attached to my carotid artery and very close to my one remaining functional laryngeal nerve; which is why there's all the umm-ing and aah-ing about the risks of another surgery.....deep sigh!

Not sure if they'll give me any more Cinny now that it's done what we hoped it would ....it's hellishly expensive so I don't think just me feeling crappy will cut the mustard in getting funding for another lot. Hey ho.....

Yes, will keep you posted.

J x
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Re: I'm back too......

Post by Hadleigh on Thu Jul 23, 2015 7:20 pm

I suspect if i needed it done again I would struggle to find a willing surgeon, Mr M had a right old job with all my previous scar tissue getting in the way.

You should stamp your feet if you want more Cinny, I seem to remember Rachel was and probably still is on it and that's quite a long time now.

Hopefully FP is up for the challenge and you can get rid sooner rather than later.

Nelly
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Re: I'm back too......

Post by Tigerlily on Sun Jul 26, 2015 12:38 pm

That is such good news, Jasmine - a long time a-comin', but they've found it and now you can proceed from there.

Your appointment on 4 August will be here soon and we'll all be waiting to hear how it goes.

Sooo good to hear from you again!

Love from Tigerlily xxxx



PS My update will be in a separate post soonest.

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Re: I'm back too......

Post by Amanda Lynne on Mon Jul 27, 2015 4:14 pm

Hi Jasmine 
So lovely to see you back on forum. You've been through a lot, great to hear that lowering your calcium has proved beneficial and it will be a big help in FP making the decision for surgery. Also that they know exactly where the little b****r is hiding.
Keep us posted about your appointment on 4th.
Amanda xxxx
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I'm back too

Post by GillG on Sun Aug 02, 2015 8:07 am

@Hadleigh wrote:
You should stamp your feet if you want more Cinny, I seem to remember Rachel was and probably still is on it and that's quite a long time now.

Hopefully FP is up for the challenge and you can get rid sooner rather than later.

Nelly
Hi Jasmine,

Just posted a long reply but it got lost somewhere. I might have an alternative to cinacalcet.  I've been using boron supplementation and my calcium, as of 22nd August is down to 2.23 and 2.24 and PTH down from 7.1, and then 9.1 to 7.1 again.  Those 3 results are since August 2014 when  the HPTH returned. Hope this post gets through and I'll give you more info if you or anyone else would like. Best regards, Gill

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Re: I'm back too......

Post by Hadleigh on Mon Aug 03, 2015 9:28 am

Hello Gill and welcome to the forum

Sorry to hear hpth returned, seems to happen to quite a few people.

I had a quick Google for Boron info and it seems to be one of those supplements that can possibly help with some deficiencies. Does it have a direct affect on the adenoma or it it just used to reduce levels ? presumably if the adenoma is still there once boron is stopped levels will rise again.
It does appear to affect T4 and T3 thyroid conversion so I think those who also have thyroid disease would have to be very cautious.

This is interesting so do keep us posted on how you get on Smile

Nelly
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I'm back too

Post by GillG on Mon Aug 03, 2015 11:43 am

Hello Nelly,

Thank you replying,

I decided not to have a sestamibi scan this time, as the surgeon who did my op in 2013, preferred to organise that the day before the operation. So I've held off until I know whether another operations might be necessary. So I'm not sure if it has a direct affect on any adenoma if there was one, but I think now that it might. The early symptoms I had, disappeared after I'd been taking boron for a while and my guess was that it was because they mostly were from the calcium imbalance. I was expecting/hoping the calcium would be down but didn't really think the PTH would be too.  But since it has come down to 7.1 and is now nearly within the standard range, (1.6 - 6.9) I think the boron may work on both. 

I read that boron is a necessary mineral for all living things and it's suggested that HPTH is a deficiency disease caused by its lack. Apparently modern agricultural methods deplete the soil of boron. 

Walter Last is a retired research biochemist and toxicologist  - perhaps you came across him in your researches. What he says about boron and parathyroid is worth reading.  His article in Nexus magazine gives instructions on how to take it and also for a cheap source of boron.


Thanks for the info about T3 and T4 - I will have to look into that. 

My doctor, who is new and is not well versed in HPTH, didn't have a clue why I was air punching when she gave me the results.  

I've posted as Jillian, at more length on Simon's old forum so you might like to read it.  I'll keep in touch and hope others will research it and give it a try,  hopefully with a similar success.


Gill

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Re: I'm back too......

Post by Little Audrey on Mon Aug 03, 2015 2:07 pm

Gill, that is very interesting about the boron.  I had never heard of that.  Worth looking into!

I am also very sorry your pHPT has returned.    As Nelly mentioned, that does seem to happen to so many, but it really stinks!     My last levels were calcium 9.5 and PTH 54.    In UK numbers those would be calcium 2.4 and PTH 5.7.   Although those numbers are acceptable, I would be much happier if they were lower.    I have requested these levels be checked every 3 months instead of every 6 just for piece of mind.     I may have to deal with it again at some point too.

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Re: I'm back too......

Post by Hadleigh on Mon Aug 03, 2015 8:08 pm

Some info on Boron

http://www.acu-cell.com/b.html

I think the paragraph at the bottom on toxicity and accumulation in organs is slightly concerning so I would advise anyone tempted to try it to do your research first.

Nelly
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I'm back too

Post by GillG on Mon Aug 03, 2015 9:19 pm

Hello Nelly,

Thanks for the acu-cell link. It seems the jury's out or at least cautious, which is how it should be.

I do hope if people are interested enough they will do their own research and together we may be able to get a bit of momentum for some decent peer reviewed studies on the link between boron and PTH. At present most of the information seems to be on alternative health forums. 

You can have a blood test for boron levels if your doctor is amenable to taking odd requests. I did and found that the test is geared towards measuring toxicity.  The upper limit of acceptability is high - can't exactly remember where I have that info - from memory though up near the 100 mgs mark. 

I mentioned boron to the endocrinologist I saw this time around. He's not a surgeon and doesn't specialise in PTH. He was pleasant but non committal - as in 'Oh I've never heard of that before'.  A modicum of research would establish that the body's receptor site for boron is the parathyroid. It just needs to be explored more fully.  

Audrey, hello, glad to hear that your results are within the normal range and sure hope they stay that way for you. Once you've had something like HPTH, it's hard to let go of the worry that it could recur.  

Gill

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Re: I'm back too......

Post by Jasmine2 on Tue Aug 11, 2015 11:12 am

What a difference a couple of weeks make ......the day before I took my last Cinacalcet my calcium was down to 2.44 and I was feeling great! Two and a half weeks later I had bloods done again when I saw JC last week, feeling like death warmed up .....calcium back up to 2.82, PTH 17.....Think the Cinacalcet proved the point!

Anyway, Jeremy Cox was happy with the Cinacalcet experiment and has referred me back to FP to discuss surgery...I see him again on Thursday - fingers crossed!

Also, JC agreed to give me some more Cinny - yay! - just waiting for it to kick in to notch me up a gear again.

Will let you know what transpires with FP on Thursday.

Jasmine x
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Re: I'm back too......

Post by Hadleigh on Tue Aug 11, 2015 12:06 pm

Good luck, hopefully FP will agree to surgery and fit you in soon
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Re: I'm back too......

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