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newbie to forum

Post by keir on Fri Jun 19, 2015 5:19 pm

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Hi everyone. My name is Keir and I'm from Manchester. Diagnosed with hyperparathyroidism couple of weeks ago. Met with endo day before yesterday. Just trying to get my head around diagnosis really. My Calcium levels are a steady 2.85 but not really sure what that means. The day after meeting endo I got a date through for a scan on 9th July. Have felt like crap for about 2 years. Pain in bones, muscles and joints but just thought I was getting older, have just turned 49. If anyone can tell me what to expect after scan I would be grateful.Thanks

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Re: newbie to forum

Post by keir on Mon Jul 27, 2015 5:01 pm

Hi all just got back from Salford after having ultrasound. Wasn't sure what to expect but certainly didn't expect to be told I have a large mass in my neck. Apparently a lot lot bigger than a parathyroid. So now I'm officially crapping myself. She said she would write up report for my endocrinologist today so she certainly not hanging about. Also got calcium result from last week's test. It's crept up a bit too 2.94 which explains why I feel like crap. If anyone has any advice as to what I should do next I would be well grateful

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Re: newbie to forum

Post by Tigerlily on Mon Jul 27, 2015 6:44 pm

Hang on in there, Keir. There might be an explanation for this, and a second US scan is something I would ask for in your position.

I would contact the endo's secretary tomorrow and ask if the US report has been received, and get them to make an urgent appointment for you to discuss it with the endo. 

They don't seem to want to put anything in writing and will probably only tell you of the findings at a face-to-face clinic appointment. For example, I had an MRI and had to wait 2 weeks for an urgent appointment to discuss it, and all they had to tell me was that it was normal!!

I can't understand why they are not routinely measuring your PTH. I see it was high recently back in June when it was measured at 14.9 (twice the top of the range). It's probably time to have that measured again. GP's sometimes forget to order it as it is deemed to be a more expensive test than some.

If you have to wait for an appointment to see the endo, I would ask the GP to measure Ca and PTH again in the meantime. Your Ca is very high and you don't want it to go any further.

See what tomorrow brings in terms of progress in getting to know what the US findings are - and I hope Dee or someone else will hop on here when they see this post of yours with a fresh eye and some more advice.

Keep us posted on progress - Love from Tigerlily xxxx

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Re: newbie to forum

Post by keir on Mon Jul 27, 2015 7:01 pm

Thanks Tigerlilly will do as you say. The Norman website said some tumours can be as big as a golf ball so hopeful nothing else is going on in there xxx

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Re: newbie to forum

Post by pilipala on Tue Jul 28, 2015 10:13 am

Hi Keir,

Weirdly perhaps, I think this is a good result.

She said it was bigger than a parathyroid - did she give you any indication of how much bigger? A normal parathyroid is the size of a grain of rice i.e. tiny and very hard to see. If she saw something the size of a grape, that would be classed as massive in the pt world. I'm guessing you can't see any obvious swelling externally and you don't have any problems breathing/swallowing?

Your bloods definitely point to a hefty benign adenoma - hefty in terms of churning out the PTH, if it's big in size that makes it all the easier to find during the op (though I'd still strongly push for having all glands checked in case you're part if the small minority with another one tucked away somewhere).

I don't know if you're the kind of person who worries about cancer. I know many people do but apart from being unbelieveably rare it does present differently. Firstly the biochemistry results from bloods are  different - and carcinoma looks different - not a nice lump but more messy and growing into the surrounding tissue. Plus you will probably already be getting cancer treatment when you discover this. You don't get a pHPT diagnosis and then find out it's cancer. It just doesn't happen that way round. Doctors are appalingly bad at diagnosing pHPT, however they are good when it comes to cancers. I hope this reassures people. I'm not a big worrier but but I know some people can't help but fear the worst and doctors avoid saying the c-word because they don't want to put ideas in patient's heads. I'm more of a 'let's talk about this head-on' kind of thing.

So I'm hoping that's helpful, rather than creating any extra alarm...or maybe that wasn't what you were worried about? Plus you almost certainly have raised cortisol (most phpt sufferers do) so you will be feeling stressed and anxious regardless. Another wonderful symptom of this condition!

Your calcium levels are awful so the sooner they move on this, the sooner you can feel better.

Love
Dee
xxx

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Re: newbie to forum

Post by keir on Tue Jul 28, 2015 10:37 am

Thanks Dee that was exactly what I was worrying about. That has really helped reassure me so many many thanks for that. Have phone appointment with gp tomorrow. If the Salford endocrinologist is dragging his feet. (he's the one that said calcium of 3.0 was acceptable) then can I ask my gp to refer me to different hospital? ? If so then would Salford send scan results etc to new hospital so things could get moving more quickly? ?

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Re: newbie to forum

Post by pilipala on Tue Jul 28, 2015 10:49 am

In England you have 'choose and book' system so you are allowed to select who you see.

I'd suggest skipping the endo and going straight for a referral to a parathyroid surgeon. The names that often come up on the forum are Fausto Palazzo in Hammersmith and Thomas Hardy in Liverpool.

I'm hoping others with more experience of this can jump in here since I'm under NHS Wales and we have a different system called 'keep waiting forever and then be jolly well grateful you get to see anyone at all'. (I'm obviously having to paraphrase from the Welsh.) :-)

Dee

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Re: newbie to forum

Post by keir on Tue Jul 28, 2015 10:51 am

Thanks again Dee.Always useful to know ones rights x

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Re: newbie to forum

Post by keir on Tue Aug 04, 2015 8:52 pm

Hi everyone. Have not been able to speak to my endo because he's on holiday but got phone call today saying can I go in to hospital tomorrow to see ENT consultant. They seem concerned that the mass is on my thyroid not parathyroid. Hopefully will be a bit wiser tomorrow.
My gp said he had been in touch with hospital and he repeated what you wrote Dee. About the mass being one lump rather than messy which he said was a good sign

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Re: newbie to forum

Post by keir on Wed Aug 05, 2015 8:07 pm

Hi everyone. Saw ENT consultant today. He did another ultrasound and took tissue sample from my mass. Also took a syringe full of liquid out of it. I said I had heard the adenoma can get as big as a golf ball. He informed me my lump was bigger than that. Appointment next Wednesday for results from today. He did confirm it's going to have to come out.

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Re: newbie to forum

Post by Hadleigh on Wed Aug 05, 2015 10:16 pm

Hi Keir

Just catching up on your progress, not sure I can add anything that will be of any help. It is possible you have a thyroid nodule as well as parathyroid adenoma and one is hiding behind the other. 
Hopefully you will get some answers next week, keep us posted.

Nelly

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Re: newbie to forum

Post by Tigerlily on Thu Aug 13, 2015 6:38 pm

Yes, keep us posted, Keir - perhaps, you have some more news by now?

Love from Tigerlily xxxx

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Re: newbie to forum

Post by keir on Thu Aug 13, 2015 7:28 pm

Hi all. Found out I have a cystic parathyroid adenoma about the size of a goose egg.Found this out yesterday and that surgery is in 2 weeks.unfortunately when I went for the pre op they found my calcium level was 3.15. As I was feeling nauseous and dizzy they admitted me as an emergency. I spent yesterday on a drip that has lowered it back to 2.93.so they let me come home. The medicine will continue working for next 3 to 5 days. Have another bloods test scheduled for Monday. Just got to keep it together till surgery on 26th. Am drinking over 8 litres of water a day. Will keep you informed and want to thank you all for your support. Big love xxx

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Re: newbie to forum

Post by Tigerlily on Thu Aug 13, 2015 8:25 pm

Hi Keir

So sorry to hear of all this, but so glad your medics have been proactive enough to find it, recognise it, and get you slotted in for surgery - and a Ca of 3.15 is quite seriously high. So glad you were able to get it down a bit.

Go easy on the water drinking though - there is some recent research that way over the top of your normal water consumption might not be a good idea. My husband went a bit mad with it and ended up with a nightmarishly low sodium level and was rushed to hospital. You don't want to end up there before your allotted time!

Just take it easy - one step at a time until your next bloods on Monday, and then you only have to hang on in there for another 10 days or so before the surgery.

Keep us posted on developments - we'll be so pleased to know when you're done and dusted and free of the pesky thing.

Love from Tigerlily xxxx

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Re: newbie to forum

Post by keir on Thu Aug 13, 2015 8:50 pm

Thanks xx

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Re: newbie to forum

Post by Hadleigh on Thu Aug 13, 2015 9:14 pm

Good grief Keir, with that calcium no wonder you felt bad, thank goodness you have a good team of docs who recognise you need sorting asap.

Ditto with the drinking advice, you don't want to overload your kidneys and cause more problems, try small ice lollies if you are really thirsty.

Take care and lots of luck, not long to wait but must seem ages when you feel so rough Neutral

Nelly

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Re: newbie to forum

Post by keir on Thu Aug 13, 2015 9:53 pm

Will try that idea. Thanks Nelly xx

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Re: newbie to forum

Post by Jasmine2 on Thu Aug 13, 2015 10:00 pm

Hi Keir, I've come a bit late to the party having been somewhat absent from the forum for a spell but I'll catch up on your story.....hang in there, not long to wait for your op.

Jasmine x

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Re: newbie to forum

Post by keir on Thu Aug 13, 2015 10:07 pm

Thanks xx

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Re: newbie to forum

Post by pilipala on Thu Aug 13, 2015 10:33 pm

Wow Keir, that's some adenoma.

Hopefully you have some people to keep an eye on you and who can take you straight to hospital if you get really bad again. So pleased you have only two weeks til surgery though. That day can't come soon enough.

Wishing you an excellent surgeon and medical care,

Love
Dee

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Re: newbie to forum

Post by keir on Tue Aug 25, 2015 5:16 pm

Hi all.Going in for surgery tomorrow morning. Wish me luck and I hope to let you know how I get on. Xxx

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Re: newbie to forum

Post by Hadleigh on Tue Aug 25, 2015 5:26 pm

Wishing you lots of luck and hoping it all goes well, do let us know the outcome as soon as you feel up to it.

Take care

Nelly xx

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Re: newbie to forum

Post by keir on Tue Aug 25, 2015 5:32 pm

Will do Nelly. Just want it over and done with.

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Re: newbie to forum

Post by Tigerlily on Tue Aug 25, 2015 6:01 pm

Great news, Keir!
The best of good wishes to you for a successful op tomorrow. Take care of yourself so as so heal well from it - and give us an update when you feel able - no pressure!
Love from Tigerlily xx

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Re: newbie to forum

Post by keir on Tue Aug 25, 2015 6:18 pm

Cheers Tigerlily xx

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Re: newbie to forum

Post by Little Audrey on Sun Sep 06, 2015 2:55 pm

It just sickens me how patients have to deal with so much, simply because doctors are so uneducated regarding this disease!

Keir, your levels were amazingly high!    It's so hard to believe any doctor would not be able to pick this up sooner and get you to surgery MUCH sooner!!      I am happy you finally made it to surgery!

And that would be one heck of a large adenoma!!   The size of a goose egg?!   WOW!    I do hope all went well, and that bugger is now history!!

I totally agree with everything everyone else has stated on here regarding your case.

I too drank a LOT of water before my surgery.    I was drinking around 12-14 eight-ounce glasses of water a day.    I had three 24-hour urine tests performed before my surgery.   I needed 2 jugs for each test!     The people at the hospital lab were amazed at the volume of urine I produced.       It's been almost 22 months now since my surgery, and I now drink a very normal amount of water.   I drink around 7 or 8 eight-ounce glasses a day.   I had a 24-hour urine tests performed a few months ago.   I only needed 1 jug this time!    Smile    I had asked for 2 jugs when I picked them up for the test.    I wanted to be prepared, but I only needed 1.

I might add that my calcium and PTH levels were not nearly as high as yours!     I had 2 adenomas removed, but they were not nearly the size of yours!    I am very anxious to hear how your surgery went and how you are feeling now.

Audrey

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