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Parathyroid Tests

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Parathyroid Tests

Post by Gemini71 on Mon Feb 02, 2015 2:30 pm

First topic message reminder :

Embarassed Hi all I'm new to this site so please be patient with me.  My question is I have been sent for two tests for the Parathyroid . One is an ultra sound scan and the other is for I think it's called an MIBI scan.  Now I've done a bit of research on this and it seems to me they can't tell if you've got a tumour on one or more of the Parathyroid.     So why is the point in Haveing Radiation injected into your body for no reason?  Can anyone help me as I'm a dreadful worrier.

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Re: Parathyroid Tests

Post by Gemini71 on Thu Mar 26, 2015 1:48 pm

Hi All, I'm here again with what I would call good news.
I received a letter today regarding my SPECT CT scan. By all account I have no convincing evidence of a Parathyroid adenoma. So at the moment I'm feeling pretty elated that I haven't got something else wrong with me.  Thank you all for your support.
        If there is something I've missed out what I should
        Be doing please let me know.

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Re: Parathyroid Tests

Post by Little Audrey on Thu Mar 26, 2015 2:29 pm

Well, I guess that's good news, but please keep in mind that I only had one scan. It was performed the morning of surgery. It was negative. A few minutes later I had 2 adenomas removed. If your labs indicate HPT, and you are sick, don't stop fighting for a diagnosis, because if you do have one of more adenomas in there, and you leave them there, you are only going to get sicker.

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Re: Parathyroid Tests

Post by Gemini71 on Thu Mar 26, 2015 2:36 pm

Hi Audrey thanks for your quick response.  When you say if you feel sick,what sort of symptoms are you talking about?

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Re: Parathyroid Tests

Post by Little Audrey on Thu Mar 26, 2015 11:12 pm

There are many symptoms. You can check out Dr. Norman's website for a list of symptoms for starters. There may even be more that he does not list. You certainly don't want to take the chance of severe bone loss due to HPT!

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Re: Parathyroid Tests

Post by Tigerlily on Fri Mar 27, 2015 9:39 am

Hello - sorry to have to say this but I had one large adenoma show up on ultrasound, but not even this large one showed up on the SPECT scan I had. In fact nothing at all showed up on the SPECT scan.

At surgery I had 3 enlarged parathyroid glands removed.

If you study the information given on www.parathyroid.com, you will see that scans are negative rather a lot of the time, which isn't helpful I know.

Tigerlily x

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Re: Parathyroid Tests

Post by Gemini71 on Fri Mar 27, 2015 12:44 pm

Thank you both,I'll check them websites out.
But nevertheless I seem to be lifted one minute then dropped the next.  I have that many health problems ,it seems whenever I've been told all clear to something there's always another problem.

Why is it the medical proffestion never tell you anything untill it's to late ?

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Re: Parathyroid Tests

Post by Tigerlily on Fri Mar 27, 2015 5:07 pm

It's a bit of a minefield generally in my view!

My GP's surgery is currently plastered with a poster that has the heading:    
Look After Yourself.

Need I say more?!!!

Tigerlily xx

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Re: Parathyroid Tests

Post by Kathi209 on Mon Mar 30, 2015 2:25 am

Hi Gemini
Hyperparathyroid is diagnosed by your labs, not by any scan. If you have high calcium, high pth and low vitamin D you can bet you have it. I hope that is not the case with you. Wouldn't wish this disease on anyone. Best wishes to you.    Kathi

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Re: Parathyroid Tests

Post by Tigerlily on Mon Mar 30, 2015 8:58 am

Kathi is right, Gemini. All the research papers I've read state that scans are not used for diagnosis, because they can be wrong so many times. What they are used for is for locating the position of an adenoma for the surgeon prior to surgery, and they often don't show up in that situation either, but an experienced surgeon will operate without positive scans if the blood test results show PTH disease.

If someone has said to you that your scans are negative and so you cannot have a problem, you might need to move on to someone else.

Sue here on the forum is also from the Staffs area. If she doesn't see this string, you could send her a private message to ask about her experience in that locality and compare notes. She might be able to suggest a useful endocrinologist to try and get referred to. I know there are experienced people in the Birmingham area at Birmingham and Solihull hospitals, and they often send people to Greg Sadler at the John Radcliffe in Oxford for their surgery.

Don't forget Dr Miles Levy, the useful endo that Jasmine found, over at Spire Leicester and the Leicester Royal Infirmary (NHS).

Don't give up - keep us posted on developments - and ask us any more questions that you need to.

Tigerlily x

Kathi is right about the blood tests you need, as well.

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Re: Parathyroid Tests

Post by Gemini71 on Mon Mar 30, 2015 3:43 pm

Hi Both, I do have questions to ask if you don't mind. I see my Endocrinologist at the begining of next month,he usually likes a Thyroid blood test done before I go to see him.  Should I ask my GP for a blood test for calcium and VitD aswell ? And are there anymore questions I should be asking?  I've read the symptoms of this desease and due to other health issues they can relate to most of my problems.

                And once again thank you I do appreciate 
                             Your help.

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Re: Parathyroid Tests

Post by Tigerlily on Mon Mar 30, 2015 5:06 pm

Yes, Gemini - good idea to get the blood tests done before the appointment.

Try to get for your thyroid:   TSH, Free T3, Free T4 and Thyroid Antibodies.

& for Parathyroid:   Try to get Calcium, Vitamin D and Parathyroid Hormone (PTH)

They might not agree to the PTH test straight off, but do ask for it, as it is best to get the Calcium and the PTH from the same blood draw. Going back later for the PTH because your calcium came back high will be a bit fragmented (but still OK for an initial look if Ca and Vit D are all you can manage just for this first time).

Phosphates are often on the low side in PTH, and your Phosphate level should come back as part of the Bone Profile, of which Calcium is a part.

Glad you can relate to the symptoms, Gemini. Not that I want you to have this rotten disorder, though - if you know what I mean.

Keep us posted, we are all here to help - and I hope SUE will be able to give you some more information about services and people to go to (or not, as the case may be!) in your area.

Tigerlily x

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Re: Parathyroid Tests

Post by Gemini71 on Mon Mar 30, 2015 6:38 pm

Thank you Tigerlily, All wrote down to ask for or fight for.
 I'll let you know in a couple of weeks how I've got on.

                        Thank you

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Re: Parathyroid Tests

Post by Tigerlily on Mon Mar 30, 2015 7:21 pm

My pleasure, my Dear - got to get you sorted and healthier!

Tigerlily x

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Re: Parathyroid Tests

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