Post op follow up

Well, I'm now six weeks post op Tampa! As most of you know that was my second PT surgery, since which my calcium and PTH have still not returned to normal.  I'm seeing my endocrinologist - Dr Miles Levy in Leicester - tomorrow for a follow up appointment so I should know in a week or two, after more tests for him, where I'm actually at with all this.  I'm still having some HPT symptoms but I don't know yet if these are just lingering as part of the recovery process, or I do indeed still have a persistent primary hyperparathyroidism.  Time will tell, watch this space ......

Jasmine x

Good luck Jasmine, I seriously hope your blood levels are low and it's just a case of symptoms taking a while to go. You don't deserve to have these problems again.
I'm keeping everything X'd for you.
Amanda xxxx

Hopefully all will be well Jasmine, good luck and keep us posted.

Nelly

Thanks, both.....yes, will keep you posted.

J

Hi Jasmine
Wishing you all the best for your appointment and along with the others hoping and praying that you get positive news.
Lots of love and prayers
Lynn xx

Thanks Lynn, appreciate your kindness.  How are you keeping? Sincerely hope you're mending and healing and feeling better every day!

Jasmine x

Hopefully Jasmine they will be in the normal range next test, are u taking calcium supplements? I also have heard it takes time for everything to settle down. I will say a prayer that all is well on the next test. Take care Kathi.

Jasmine, I am sorry I didn't reply to your post before now. I have not been on here much for a couple of days. I do hope your appointment went well, and I'm praying that you'll have some good news for us all tomorrow!


Audrey

Thanks all, my appt is later today so I'll post later on the outcome.  Kathi, no I stopped taking calcium at just over a week post op, in line with the medical advice here in the UK where they don't routinely recommend supplements unless you get symptoms of low calcium.  Are you in the US Kathi?

J

Well, how did I get that screwed up, Jasmine? I thought your appointment was yesterday. I think maybe Dr. Lopez removed part of my brain during surgery too!

Good luck! I can't wait to hear all about it.

Audrey

Yes Jasmine I live in the good ole USA . I'm in California where it never rains. We did get some rain finely. Let us know what the doc says.

Well I saw my endocrinologist this afternoon as planned.  He was pleased to see me and seemed genuinely impressed with all the paperwork that Dr Norman had sent him about my surgery, and he was really interested to know more about the Norman Parathyroid Centre, so that was good.  I was half expecting him to scoff a bit but apart from mentioning that from the tone of his letters Dr Norman seemed to have a bit of an ego thing going on (but acknowledged that as he's 'the man' he's entitled to .....), he was very impressed with it all, especially receiving a photo of my tumour.

So, to the nitty gritty..... things are never straightforward with me are they?  He admitted that my first set of post op results aren't particularly encouraging BUT... if we were still looking at a persistent primary hyperparathyroidism he would have expected my phosphates and Vit D levels to be abnormally low, as my phosphates were before, but this time it seems, although my Ca and PTH are higher, my phosphates are above normal range too, and Vit D is low normal.  This makes him think there may be a secondary hyperparathyroidism going on as well as primary as apparently you can have both conditions running in parallel. Not something I've ever heard before.  So I've had more bloods today for Ca, PTH Us & Es and getting a scan of my kidneys.  Will have to wait until the middle of next week now when he will give me a call with my results and discuss what to do next.  I must admit I'm feeling a bit bemused .....! Have to do a bit of research on secondary hyperparathyroidism now then I suppose .....

Jasmine x

I'm REALLY confused now because I've just read that secondary hyperparathyroidism usually presents with high PTH and LOW calcium....... my brain hurts and my teeth itch so I'm leaving it until tomorrow now, can't cope with it all tonight .....

Well, Jasmine, it sounds like your appointment went well, considering how badly appointments can go at times. : ) I am happy your endo was impressed with Dr. Norman, even though he feels he has a bit of an ego issue.

As far as the secondary hyperparathyroidism, I was also under the impression that it was elevated PTH due to low calcium and vitamin D. When I first started having symptoms of HPT, my calcium was only 9.8, my PTH was 112, and my vitamin D was 23. I was diagnosed with a vitamin D deficiency. My doctors thought that's what was causing my elevated PTH. They thought that was why my calcium was not high. They thought I had secondary hyperparathyroidism. As we all know, they thought wrong, but my point is that I always thought secondary HPT was low calcium with low vitamin D and high PTH. I am confused as to what your endo meant today, as your calcium is not low, nor is your vitamin D. Hmmm............ I'm stumped. I would be interested to know how he arrived at this conclusion.

Audrey

Me too Audrey but I was feeling really exhausted today and I couldn't quite get my head round what he was saying so couldn't think properly to challenge what he was saying and ask the relevant questions. So I'm going to mull it all over and when I speak to him next week I'll be more prepared.

Jasmine x

Mr admin has secondary/tertiary hpth due to long term renal problems, he has high pth and high/normal calcium, if I remember rightly.

Of course I'm not saying that is what you have Jasmine but yes more research for you to do   

Nelly

That's interesting Nelly, which would bear out the endo's theory if that's the case with me, although my Vit D isn't very low, just low normal. I know that my renal function isn't perfect and my last serum creatinine had crept up to the level that suggested a referral to a nephrologist, but at the time my GP didn't agree with the lab's observations and suggested we monitor it over time, but that was ages ago now, and I went along with it because I had bigger fish to fry with bloomin' PHPT.  Well, I'll read up on it when my teeth stop itching and we'll see what transpires when I talk to endo man next week.

Jasmine x

Not sure what his Vit D is but he takes Alfacalcidol which is Vit D + calcium. He knows more about kidney stuff than I do so may have some words of wisdom.

Nelly

Jasmine do u know at the time of surgery if your levels dropped. How high is your cal/pth? I agree that secondary should be low calcium and low D. Its is great that your phosphorus and vit D are at normal levels, kind of makes me think that your body is trying to settle in to some kind of normal. Hate to say it but from some of the stories I've heard about Dr. N he can be a jackass. Hoping you new tests will come back great.

I forgot that yes kidney issues can elevate levels. If you get a chance on facebook, talk to Lynn Forbes [spelling maybe wrong] She had secondary para problems. Take care Kathi

Hi Jasmine
I hate the itchy teeth thing  It's such a pain when you come away from a consultant and they have thrown you a curved ball and you aren't sure whether to go with what they say or try and prove that they are wrong.
My serum creatinine was up on my last set of results and I have no idea what that means.
Hope you get some answers soon.
Amanda xxxx

Found your post-Dr-Levy post, Jasmine, thanks for the tip-off that I'd missed it.

Sorry you're no further forward at the mo - rest up for a bit and then get back on the horse.
Hide in a dark stable corner for a bit if you have to and cuddle a dog - it always helps.

Lots of Love, Tigerlily.

Quick update - I've had the day from hell today, unrelated to my health problems, but one very crappy day nevertheless, and I need to go and find a dark corner to lie down in and rock myself calm, so it's a very quick update....... on my endocrinologist's instructions from my appointment last week, I emailed his secretary yesterday to ask for the results of my blood tests.  She emailed back today to say she had sent the results to Dr Levy for him to see.  She said my serum calcium and adjusted calcium were both high again but didn't give me the numbers - grrrrr! So now waiting to hear back from Dr Levy with the numbers and where we go from here.  Feeling gloomy .....

Jasmine x

Jasmine so sorry you are having a bad day, I feel your pain. I so hope your levels will settle down. I hope Dr. Levy can shed some light on things.

Ohhhh bum Jasmine that's not fair, stupid b****y disease. I really feel for you and I'm sorry you have had a rotten day. Find that corner have a calming moment and we will be here for you when you are ready for us.
Much love A xxxx