Still waiting

Hi,
Am struggling a bit at the moment, keep trying to put my smily face on but it sure is hard at times.  I had bloods taken for genetic testing on 11/11/14 for FHH.  They told me it takes 3 months and made me an appointment for the results for next Tuesday 3/2/15 as we are away after that.   I was told to ring up to make sure it was back prior to going to Hammersmith.  So I called on Tuesday to find out and Mr P secretary has just rung me back.......  The sample was sent to Northwick Park and they did not send it off to Exeter until 18/12/14. 
Apparently they have to wait until there is a batch. She is going to try and find out if it is done yet but it looks unlikely and so  there is no point in going on Tuesday.  I am probably over reacting but  I just feel pants at the moment...... On top of aching in my arms and back, my feet feel like they have been crunched.
K Just had a call back, she has rung Exeter and it looks like it will be the end of February, I had hoped to be put out of my misery before the wedding FHH wise.
K time to pick myself up again.....
Thanks for listening, feel a real whiner
Sue x

Oh dear Sue, you get all psyched up for an appt then bang, I know what that feels like  after my fiasco appt this week, hopefully the next one will happen for you.

You aren't a whiner, you just feel crap and rest assured we know how it goes all to well.

Take care and try to keep smiling, hard as it is some days.

Nelly

Oh Sue I'm sorry they are messing you around like this. I would have been much better to have heard before you go out to the wedding. I'm so sure that you haven't got it but it's a pain having to wait all that time.
You aren't whining at all you are just unwell, I hope you feel a bit better soon and all the excitement of the wedding will help.
Love Amanda xxxx

Aww Sue, what the heck ..... that wait is agonising anyway, without the extension, 'cause you're just in limbo! So sorry I can't offer any comfort other than to send love and great big hugs.

Jasmine x

Thanks you guys,
just been having a rough day, I get really bad headaches that last for three days every month and I woke up with one today.  I thought I had a lot of patience but this is really testing me, dashed hopes of ever being able to move on.  Your hugs and kind words mean a lot.
Hugs back, Sue

Hang in there, Sue! I hope that your FHH results get figured out soon! Sending positive vibes and energy your way.

Oh, Sue - so sorry to hear of this setback. When these things happen I try to work out if there's any benefit to me in things changing - but, god, it's hard to look on any sort of bright side with HPT.

My "journey" has also been held up recently:

I waited 12 months for another appointment with the local endo who misdiagnosed me as having secondary HPT due to Vitamin D deficiency. I agreed with my GP last week that I would wait for this appointment to discuss with the endo the possibility of having MEN1 now that I have had 3 hyperplastic glands removed. I should have seen him yesterday and had had blood taken (on his own department's form) for blood testing last week. The hospital called to tell me on Tuesday that the clinic had been cancelled. When I drilled down further, I found that the clinic was not cancelled, it was just that he had cancelled my appointment! 

So here I am with (from his blood test results that I did manage to get hold of) serum calcium back up to 2.47 with a PTH of 3.8, and no local endo appointment.

I can only sympathise with your situation, Sue, and I do hope you get to hear your FHH results sooner rather than later.

Big hugs from me to you - and Love from Tigerlily xxxx

Oh no, Tigerlily, no......! It can't be .......! Maybe it's taking longer for your numbers to stabilise because you had three glands removed? In any case, you need an endocrinology follow up. Get thee to JC as soon as .......!

Jasmine x

Thanks, Jasmine - not sure what's happening at the moment!

I feel OK and lots of aches and pains have resolved, so I wasn't expecting the numbers to start playing up again. Hope it's just a post-surgery blip whilst things stabilise!

Love from Tigerlily xxxx

Hello lovelydark and welcome, thank you for your support and I hope you soon get sorted as well, it bas changed me in so many ways and like all of us, I just wish for my life back....... One day

Hi Tigerlily
Ohhh dagnabbit!!!!!    Why is this rotten disease so hard on so many of us???  I have everything crossed that it is just a blip and early days since your surgery and that your numbers will settle after time.  I would be annoyed as well at having my endo appointment cancelled like that.  Surely it makes sense to monitor your post op recovery until everything normalises??  Do you still feel the same as you did pre-op? I sincerely hope that you find some answers soon but I know it isn't easy.  Headache eased off yesterday teatime, only to return at 4 a.m. plus couldn't breathe as totally blocked sinuses.  I was wondering if it was the PPI doing it and so skipped it the last couple of days.  I do not actually get heartburn or indigestion, its more burping  and silent reflux and I wonder if that is what is causing my sinus problems as never had it before until last summer.  GP thinks it was the H Pylori but have done the course of antibiotics now and sinuses still blocked.  I did have an MRI parotid last summer which showed one polyp in my left maxillary sinus, locum oral did not want to do anything about it but it seems odd to me that no nasal polyps found in back of nose on endoscope and have since read about a Browns tumour found in a maxillary sinus.  The only way to know it definitely is an antrochoanal polyp is to remove it.  I have no history of sinus problems, not allergic and never had asthma.
I must admit I was feeling pretty miserable last night with the FHH results delay, they held that sample for over five weeks before sending it off, probably misplaced it!  I didn't even watch "The Musketeers" and that usually cheers me up!
I know how frustrating it is and I do hope things settle for you soon.
Take care, Sue x

Tigerlily hope your blood results are just a blip and your body is just taking a while to adjust.
I agree you need an Endo appt ASAP.
Love Amanda xxxx

Tigerlilly your results are exactly the same as mine and according to my endo they are fine, perfect.

Do you think there is a problem ?

Nelly

Thanks for caring, Everyone (and sorry to have high-jacked your thread, Sue - even more sorry you missed The Muskateers!).

Nelly - the fact that your results are the same makes me feel a bit better, on the one hand, but the proximity of the 2.47 serum calcium to what I regard as a too-high 2.5 level at age 62 (me - perhaps not you!) is a bit worrying. It's early days since the surgery for me, though, and I'm hoping it's just a blip on the way to stabilisation of the blood test readings.

Thanks Jasmine and Amanda for your concern as well.

I saw my GP yesterday after trying unsuccessfully to get the endo appointment reinstated and asked if he would refer me to the Endocrine Genetics Clinic at Addenbrookes (surely they can't all be useless there? ....) He agreed, and dictated the letter whilst I was in the room. My thinking was that it's OK to go and see an endo to ask them to rule out MEN1, but if they are unable to do this themselves they will only (hopefully) refer me to an endo geneticist at a later date. By cutting out the endo-middleman (so to speak) I was hoping to go straight for the horse's mouth by asking to be seen at the Endo Genetics Clinic.

Soooo - that's the current plan. I've been advised by AMEND (the help group for MEN1 and other similar endo manifestations) that the Addenbrookes MEN Clinic team are to be recommended. There's no cure for MEN1 etc but regular monitoring is essential if you are to avoid its problems, so I want to slot myself into that system if indeed I do face the prospect of MEN1, in view of having already had skin cancer, having numerous longstanding endocrine and non-endocrine cysts, and now having had 3 hyperplastic HPT glands removed.

Off to lie down in a darkened room now after all the alarums and excursions with the local endo this week. Care to join me there, Sue?!!

Love, thanks, and Great Big Hugs to All, from Tigerlily xxxx

My calcium and pth have been rising since post op hypopara, last test I had was Nov so no idea where I am now. I will be 60 in a few weeks so not far off you Tigerlilly, I felt my levels were to high but endotwat says I'm cured but what would she know 

Nelly

Say no more, Nelly - I know exactly what you mean. I do at least have a sympathetic GP who, despite never really educating himself on pHPT all the time I've consulted him, will usually order blood tests when I ask for them.

I'll give it until the end of February before asking to have Ca and PTH tested again in the hope that they will stabilise in the meantime. I'll let you know what they are. Perhaps it might be a good idea to have yours checked again, Nelly?

Just a thought - Love from Tigerlily xxxx

So sorry to hear about the delay, Sue.   It is bad enough having to wait even a normal amount of time for results when you are very ill; having to wait that long is simply torture!    I am so sorry.

I know when I get my blood drawn at our local hospital, some of the blood has to be sent out to an outside lab.  When that happens, it can take up to 12 days or so to get the results, and even that is too long for me!!    And, when they do send the blood to the outside lab, that lab only picks up the blood at the hospital 2 different days a week, and the lab only runs the test 1 or 2 particular days a week.    I HATE waiting!!!!

And, no, you are not whining; you are just tired of dealing with everything, and that is perfectly normal!!   It is much better to get it all off of your chest when you're ticked off about it all, rather than hold it in.   We're all here to listen when  you feel the need to gripe.   We've all done our share.

Tigerlily, your levels are not that bad.   Actually, they are very similar to my post-op levels.    My levels were calcium 10.2, PTH 26.8; calcium 10.0, PTH 38.0; calcium 10.0, PTH 31.7; calcium 9.9, PTH 42.0; calcium 10.0, PTH 22.0; and calcium 9.7, PTH 39.0.    I will retype these levels in a bit and list them as UK numbers.    I will say that your levels in US numbers would be calcium 9.9, PTH 31.0.    Those levels are very similar to mine, maybe even better.   When entered into the normograms, our levels appear to be normal.    I think some of us just normally have calcium that is not as low as others.   At least, I hope that's the case!  

Audrey

Thanks for your opinion, Audrey, and it's good to know that my levels are similar to yours That Ca 10 and PTH of 22 sure look good to me! That's about where I'd like mine to be, as the PT is suitably supressed for the calcium level.

I think you are right when you say some of us must have calcium that runs a little higher than others. That would make perfect sense. I'll wait a little longer before getting into another panic!

Keep us posted on your general progress, too, Audrey, with the nutty nephron.
And how are you and your kitties doing with the itching? Has it reduced any yet for any of you? I do hope so - and that you have found the reason for it so that you can avoid it at all costs in the future.

Love from Tigerlily xxxx

I should have had bloods done in Dec but I'm putting it off, I upped my thyroxine dose much to endotwats disgust but I'm doing better on the higher dose so I don't want thyroid results to put a spanner in the works, docs have no idea how to read thyroid numbers 

I have a long list of tests to get done so maybe I should get on with it, luckily we have a very helpful blood test lady who does whatever we ask for so we can avoid the GP 

Nelly

I agree about the thyroid numbers, Nelly. I get better advice from you and Edwin than from my endo!

Yes, get the tests done, m'Dear, so that you know what you are dealing with. Glad you can at least get them ordered easily enough.

Love from Tigerlily xxxx

As promised, I am back to type my post-op levels converted to UK numbers. Here they are: Calcium 2.6, PTH 2.8; calcium 2.5, PTH 4.0; calcium 2.5, PTH 3.4; calcium 2.5, PTH 4.5; calcium 2.5, PTH 2.3; and calcium 2.4, PTH 4.1. I hope I got them all correct. I didn't use a calculator, just my brain, and sometimes that is not very reliable!

Audrey

Thanks so much for these, Audrey!

My 2.47 calcium and PTH of 3.8 look to be in the same area as yours generally. I like your PTH of 2.3 better though!

I'll keep an eye on my numbers and let you know what they are again at the end of this month.

Thanks for converting them, Dr Aud - much appreciated!

Love from Tigerlily xxxx

Tigerllily,
     Glad to see your numbers are close to Audreys.

I hope men is not in the picture but I sure can appreciate your thoughts of wanting to know exactly that you don't have it. 

xxx, Nancy

Sue,
    It's hard enough having to get the test and then to have to wait for the results.   I still weigh in that you don't have it. 

Thinking of you,

x  Nancy

Thanks, Nancy - yes, it looks as though I was worrying unnecessarily about the readings!

Love from Tigerlily xxxx

Just got a letter with my next appointment to get my FHH results, March 11th, so just another month to wait.
Sue x