Parathyroid Tests

 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.

Hello Gemini71

So nice to have you here with us - but sorry you are starting on a parathyroid journey. We hate using the word "journey" but it just seems to fit the way things go for some of us.

The ultrasound scan will, as you know, have no side effects and, in the hands of a skilled operator even quite small enlarged parathyroid adenoma can be picked up. Are you having the US first, by the way?

The sestaMIBI scan is something I didn't want either, but I eventually agreed to have it as a large adenoma had shown up on US and I was worried that there might be others that the US had not shown. As it was, I had the sestaMIBI scan (well, actually it was a 4D SPECT scan, but it is similar and also involved injection of a radio-nucleide dye) and nothing at all showed up - not even the nearly 2cm adenoma that had shown up quite clearly on the US.

I had surgery on 11 December and, because I had some strange "tight" and "fat" feelings on the opposite side of my neck to the adenoma seen on US, I asked for an investigation of all 4 parathyroid glands. And I'm glad I did, because the other two glands on the other side of my neck were also enlarged.

I think this is what is meant by what some people have reported about the MIBI scan not showing anything. Unfortunately, if it shows nothing, it doesn't mean there is nothing there.

Are you under the care of an endocrinologist for your scans? And if you can tell us where you are from, other members might be able to help with more local knowledge.

Glad to have you with us, and we'll try to be helpful to you.

Best of Wishes, Tigerlily (aka a terrible worrier, too!)

Hi Gemini71 and welcome too,
I am still undergoing tests and monitoring too so have not had a sestamibi scan either yet.  This is a lovely support group and I know everyone has been so fantastic especially when I have felt very low.  I think it is partly because everyone here understands how it can affect you both physically and mentally.  I have good days and bad and it is a slow road trying to make progress.  I hope you have a good endo that listens to how you feel as that is half the battle.  I hope your scsns do find something but don't be worried if they are clear, often they can be negative.
A big welcome from Sue

Thank you to both of you for answering my post. This is all so new to me,but Sue I can't understand how you can say you hope the scans do show something.  I've read quite a lot on these scans and they all say they don't show up,so how can they tell the ademas are there ? Sorry if I sound a bit stroppy, but when I can't make sense of something it gets me worried.  Oh and Tigerlily I come from the UK. As for Haveing a good Endocrinologist I can't even get to see him untill May. I also haven't got a good GP as mine retired last year. If they can't see the ademas on scans how do you know you've got them? I've got quite a few health problems so I'm on quite a lot of Medication, so this is just another problem for me to worry about.    But thank you to both of you for your quick response to me.   NORMA

Hi Norma

Glad you have joined us. The mibi scan, in fact any scan,  is not 100% accurate, sometimes a negative mibi can mean all 4 glands are overactive or it might just be that the adenoma is not taking up the radioactivity, the experience of the radiographer can make a difference.I had a positive mibi  scan but negative ultrasound.

 An Endo and surgeon will look at all results, bloods, urine, scans plus symptoms and decide if an adenoma is the likely cause and if so what action to take.

Whereabouts do you live ? someone may be able to point you to a good Endo in your area, May is a long time to be waiting for an appt.

Stick with us, we can help you through this.

Nelly

Hi Norma,
Please don't apologise, I know full well how all of this can get you down when you are not feeling well and worried.  I didn't pester you with questions when you first posted but I am assuming that your blood calcium and parathyroid levels are out of range.  A raised calcium and PTH at the same time from the same blood draw are highly indicative of a benign tumour on one of your parathyroids. I found when doing all my research that surgery is the only hope for a cure, however it can be quite a struggle here in the UK and that a lot of endo just want to watch and wait and observe trends over time.  If it is an adenoma and it does show up on a scan then it is much harder for them to refuse you surgery, which is why I wrote that I hoped something would show.  Not all people wish for surgery and are happy being monitored and maybe they are not that symptomatic yet.  This is only my personal opinion  but I would jump for joy if I had a positive scan.  Some people seem to have more classic pictures and are much easier to diagnose but some of us are not so clear cut and suffer for much longer.  When all this started I read everything I could find on it, then read it again as it does affect my memory.  I am sorry you have to wait until May, that was the same for me this time last year.  I found out in January my calcium was raised, then PTH, then referred to endo which was May as well.  During that time I managed to get my bloods checked monthly so that I had a pattern to show the endo when I finally saw him.  I did not want to be on the watch and wait list so I learned as much as I could about it all, forearmed is forewarned as they say.  I hope you don't mind me asking but where in the UK are you?  I am in Lincs
Take care Sue

Hi Norma

Don't worry about sounding stroppy - we make space for all sorts of ranting on this forum!

I know exactly what you mean about endo's and GP's, but someone is sending you for these scans so that is good - and these scans seem to be the main ones that are used to try and locate suspected adenoma.

You must have read details of quite a few scans that haven't shown anything, but some of them do. It seems to depend on whether or not the operators are skilled enough when doing them, and then of course they have to be correctly interpreted as well. The other side of my neck did show on the nuclear scan that there might be something else there, but the report stated that they couldn't honestly describe it as a PTH adenoma. That, plus the fact that I could almost "feel" something extra on that side of the neck made me demand a 4-gland exploration at surgery, and the rest is history, so to speak.

Have you had blood tests for serum calcium and parathyroid hormone (PTH)?. If you have some blood tests results handy, we could have a look at those for you. We have a number of members who are quite experienced at crunching these numbers and interpreting them.

It is the blood test results that demonstrate that you could have parathyroid disease - namely, a high-in-the-range serum calcium combined with a high-in-its-range parathyroid level. If the healthy system is working correctly, then PTH should be totally supressed when serum calcium is high, and vice versa. If they are both high at the same time, then that is usually an indication that you have primary parathyroid disease due to one or more enlarged PTH glands. But not many GP's or even endo's are well versed enough in this biochemical picture to diagnose from blood tests alone - sadly. The scans are only supposed to be used to try and locate already diagnosed enlarged glands to give the surgeon an idea where to look - they shouldn't really be used diagnostically, or that used to be the general thinking.

I went through several GP's, numerous endo's, a rheumatologist, a gastroenterologist, various consulting physicians, two endo surgeons, and registrars without end, before anyone would agree with me that I might have an enlarged adenoma - and no-one would even offer me a simple ultrasound!

So hang in on there, Norma, the scans will hopefully show up something for you.

Keep asking us questions and we'll try to answer your worries.

Best of Wishes, Tigerlily xxxx

See Norma,
Have  brain fog, meant forewarned is forearmed, had it the wrong way round!
Sue

Welcome Norma,

The hyperparathyroid diagnoses will be determined by labs only. Calcium and pth and vit d. The scans help the surgeon out on where the adenoma is, and to see if it is high in the neck or low in the chest. If it doesn't show at all. which does happen he will have to just go in and search. Keep us updated. best wishes.

Hi All, I have never been so confused, Just to answer one or two questions, 1, I live in Cannock that's stafford,2 how would I know if there was any ademas and 3 how would I feel because I don't very often feel well anyway due to chronic IBS.4 I can't understand how my Endo can know anything as I can't remember Haveing any test apart from blood test for him,and urine last November for Rheumatologist.      Am I right in thinking what your all saying is if he suspects the chances are I do have a problem.  As for surgery that frightens the life out of me. I have Ephesema so I can't have anaesthetic . There's no getting away from this Im frightened to death. It's the last thing I thought I'd be Haveing to fight/worry about as I've never heard of this disease. I've spent the last 12yrs fighting my way through health problems.  In the last 6yrs I've been on a life support machine twice . I'm just so frightened . I think I get like this because it's all so new to me. I must say thank you to you all for trying to help me.

Hi Norma

We all understand your worries and confusion, we have all been there.

The scans should show an adenoma but as we said they sometimes don't, if the blood results and symptoms strongly indicate an adenoma some surgeons will operate to find it, others won't they will leave it in the hands of the Endo to monitor levels.

The problem we have with symptoms is difficult as they can be similar and put down to other health issues, the list is long and you may have many or none at all, probably easier to look them up than me type them all, I'm sure we have something in the reference section.

If you have had bloods and urine tests then the relevant ones will probably have been included, they will be the only tests apart from the scans.

I wouldn't get too stressed about surgery, if you do have an overactive parathyroid there are other options to sort it out. If you are not suitable for surgery and your calcium and pth are only mildly raised then they can decide to just monitor you or there are medications you can take to reduce calcium and pth so surgery is not the only way to go and at the end of the day if you don't want surgery (or can't have it)they won't do it, it will be your choice as well as theirs.

If you can it would be a good idea to ask your GP to go through your test results with you and explain why he/she thinks you have a problem, it sounds as if they are keeping you in the dark with all this, also ask for a printout of the results. As suggested if you can give us your results we can interpret them and we will be able to give you a better idea of what they mean.

Please don't worry too much about all this, it seems horribly confusing now but once the scans are done you will have more idea of where this is going and remember surgery is not the only option.

If any of our ladies are from up your way they may be able to point you to a good Endo who is experienced with this.

I hope I have helped put your mind at rest a little, keep asking us questions we are happy to help anytime  

Nelly

Thank you Nelly, you have put my mind at rest a bit. Like you say I think my Endo mainly is keeping me in the dark and worrieing me by just mentioning it to me last time I saw him without explanation, and telling me it's " it's nothing to worry about we will just keep an eye on it " then the next thing I know is I've got two scans to go to that he never mentioned.  I have an appointment next Monday with my GP, so I will ask for my blood results and ask him a few more questions.         So thank you for your post. I will do as you say.  Norma

That's good advice from Nelly, Norma.

Let us know how it goes with your GP, and you do have other options apart from surgery.

Best of Wishes, Tigerlily.

Hi Tigerlilly, yes I agree I think it's good advise from Nelly, I'm trying not to worry, so I won't ask what other options there is besides surgery yet.  As they say I'll cross that bridge when I come to it.         But thank you all for your help. And I will keep in touch.

Cheers, Norma - yes, do be sure to keep in touch and let us know how it goes with your GP.
We are all here for you.

Best of Wishes, Tigerlily

Welcome, Norma!! Glad to have you join us! We have all been through heck with this darned disease, so we all understand how you're feeling, and we will do all we can to help you through it all.

The ladies are all correct with their information here. It is true that a scan might not reveal any adenomas, but, then again, they just might. I had struggled for so long to get a diagnosis, I had asked my endo to order a MIBI, in hopes of spotting something. Fortunately, I was diagnosed by Dr. Norman in Tampa shortly after, and I did not have any scans until I went to Tampa for my surgery. I might add that my MIBI that morning was negative, but Dr. Lopez knew there was at least 1 adenoma in there from my lab results alone. He performed the surgery and removed 2 adenomas and a thyroid nodule.

Yes, it is true that some surgeons will not operate if at least 1 adenoma is not revealed by a scan. That is a shame. I know why they do that, but so many people continue to suffer needlessly because of this. If you have not been diagnosed by your lab results, I would say go ahead and get the scans done. They just might reveal something, and you can be cured!

I'm sorry you've been through so much already. I can see why you are frightened, but don't worry, there are always solutions and different options.

Have you been diagnosed by your labs? Would you mind posting your lab results?

Audrey

Thanks Audrey, I haven't been diagnosed anything. I just had my regular thyroid blood test, then I seen an Endo after for my regular 6 monthly check up,where he just casually mentioned the Parathyroid, wich Id never heard off, he then just said casualy " nothing to worry about we,ll just keep an eye on it" No metion of scans ,then one week later I had an appointment for an ultra sound scan, few days later this MIBI scan. So I've began to worry because he never told me nothing then tow scans arrive.  I see my GP Monday ( well I say my GP but my GP retired 12mths ago ) and I've yet to find one Im confident with, anyway when I've had a chat with him I'll let you all know. Is there anything in particular I should ask him ?

Norma, you need to ask your GP to test your calcium and parathyroid hormone from the same blood draw. That is the only way to diagnose this disease. You usually can diagnose it from those tests alone. If he has not done that yet, you might want to ask to have that done BEFORE the scans. It could save you from having to have extra scans done. If the lab results reveal a problem, THEN you might want to get the scans done. It is very unusual for a doctor to order scans before they've checked the blood. Is he thinking there is a parathyroid problem just on a hunch? And if the lab results do reveal a problem, yes, there IS something to worry about! It is not something you want to just keep an eye on! If you haven't checked out parathyroid.com yet, you might want to do so. You will learn everything you need to know about this disease on that site.

Audrey

Hi All, I just thought I'd update you on what my GP said yesterday,not that I really understand.  He did say my calcium level is slightly down,that's the reason for these scans. He was only a Registar who I've never seen before, so I didn't come back full of confidence. But I have the ultra sound scan this week so I'll take it a step at a time.       I did ask for the blood test for Calsium.and Parathyroid hormone plus urine test, and the answer he gave me was your Endocrinologist will ask for that if need be.  So really Im still no clearer. The MIBI scan is what worries me because of all my other health issues, but as my husband said we,ll go and ask questions when we get there.  So all in all Im still worried.  Norma

Do you mean calcium is slightly up ? The scans are used when levels are high due to overactive para gland, not low.

The radioactive compound is only taken up by the parathyroids so it shouldn't affect anything else. It really is a simple procedure, just takes a while so a tad boring, no after effects to worry about.

Nelly

Oh Thanks Nelly, yes he said the Calsium level is slightly up, and when I asked him what I could do to help myself he said to drink a bit more milk and cheese.  Maybe I've got that wrong it may be the reverse . I just know he said to drink more milk,so does that mean it's slightly down.

Hi Nelly my husband has just informed me that my GP said my level was 2.4 I don't know what that means.

He may have that wrong.  He's just confusing me or worrying me.       He did say to drink milk to help myself. I don't know if that's any help. When I go for my ultra sound scan tomorrow I'll ask more questions.   Sorry for being a nuisance .

Calcium at 2.4 is normal, it makes no sense your doc telling you to drink more milk, that would only apply if you had low calcium, which you don't and if you had low calcium they wouldn't be suspecting hpth, very odd. I should have added high PTH and low calcium could be secondary hpth but your calcium isn't low.

I think you need to clarify with the sonographer tomorrow why you have been referred for scans as it does seem a little confusing, I wonder if your doctor is confused !!

Let us know what happens.

Nelly

I agree with Nelly, Norma. Ask the person doing your scans what it says on the paperwork. They will be happy to tell you to put you at your ease.

Don't worry about getting confused yourself. It's very difficult to understand all this parathyroid stuff when scans are sprung on you as they were, without any explanation.

Take it one step at a time. Just go for the ultrasound scan first. See what the operator says. If you don't want the MIBI at this time, then don't have it. Just say you need to clarify with your GP why it has been ordered by you.

From what you write here, you doctor does sound confused. More milk and cheese would increase your calcium level, and 2.4 is middle of the range (2.2 - 2.6) and you don't really want it any higher.

Do the ultrasound first, as it's simple and non-invasive. Let us know what the results are. Then if you don't want the MIBI scan at this time, just say so. It can always be ordered again later.

You could always go back to another GP at the surgery and ask to speak to them about why the MIBI was ordered for you.

Good Luck, Tigerlily x