Parathyroid Tests

First topic message reminder :

 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.

Norma you really do need to know your PTH level, if that isn't raised then your doctor is very confused and worrying you unnecessarily.

Thank you Nelly, and Tigerlily, I'll do exactly as you say tomorrow ,see if I can get more information. I think the trouble is with GP and such they don't like to think we know to much,whenever I ask questions or make suggestions they tend to want to get rid of me.   I used to have a very helpful GP but he's retired and now I'm just going from pillow to post,I seem to see someone new all the time.  Still I feel very comforted knowing I can talk to people like you.  Thank you and I'll let you know how I get on tomorrow .

We understand the problem, Norma - we've had to run around the block abit ourselves with GP's changing, not knowing etc.

We're here for you. Let us know how it goes.

Love Tigerlily x

Hi Nelly and Tigerlily, well I've been for the ultra sound scan, and this is a long story, with a few mistakes I believe. First off my husband took a small recorder in with us so we made no mistakes.                       About 5yrs ago I had an Heart Attack and I was put on Amidrone when I was taken of it I was told I had an UNDERACTIVE THYROID and put on Levothyroxine . Now the lady today said I was sent for the test today because I have an OVERACTIVE THYROID when I told her that was wrong she said at some stage it was OVERACTIVE , so that's something else I didn't know. Anyway back to the test she said she could see something but wasn't convinced it maybe a bumpy muscle. I asked about Calsium level and she said its high that's why I was sent my PHT elevated,and my bones thinning which I new because I have osteoporosis. So really Im more confused than ever now. She did say my Rheumatologist probly sent my blood test to my Endo. So I'm even more worried now as I don't know if I'm under or over active, and why nobody told me.    So I'm still confused.

Could she have said/meant you have an "overactive parathyroid" which isn't connected to thyroid problems although a lot of us have both.

If you are taking Levothyroxine now your thyroid is underactive, you may have been overactive at some stage in the past or you may have Hashimotos in which case you swing between over and underactive. I wouldn't worry about any of that as you are on the right medication.

I suggest you see your GP and ask him/her for a printout of your blood results and to write down exactly what they are testing for. It is your right to know this information so don't let them tell you otherwise 

Nelly

Hi Nelly and Tigerlily Im here again, would you Beleive ive just found a letter from the 7-1-2015 from my Endocrinologist and it states that my thyroid function test was. PTH 9.02 corrected calcium2.48 Vitamin D3 72.  He just states he has arranged to see me in 6mths and if PTH remains elevated then he would organise a Parathyroid test.  So he never actually told me any of that but it's a letter he sent to my GP.     Now have you got any advise for me to help myself.

Phew, Norma, this is a right old mix-up, isn't it?!   No worries, though, there's nothing that can't be fixed.

Your GP should be involved in all of this because the Rheumy and the Endo should have written letters back to the GP.

What appointments have been made for you during the next few weeks?

If you have no further appointments in view, then maybe you should go back to your GP and ask for a full explanation of what these people think is the problem. It is very poor service that they are not telling you more about their thoughts!

Good that your husband took the voice recorder!

Tigerlily xx

My last post has just crossed with yours, Norma.

Tell me, what is your (uncorrected) Serum Calcium level? And what is your Albumin level?
Let me know these if you have them.

Tigerlily xx

Thats your Parathyroid test not Thyroid, they are different which is maybe what is confusing you. Forget about Thyroid and concentrate on Parathyroid.

PTH of 9.02 is high, Calcium 2.48 is not high, it is within range but in the upper part of the range, Vitd 72 is not bad, mine hovers around 12.

You cannot do anything to help yourself in the way of taking anything or changing your diet.

The reason your PTH is high is because you probably have 1 or more overactive parathyroid glands, it or they are churning out too much parathyroid hormone, there is nothing you can do to fix it yourself. You certainly don't need to drink more milk or eat more cheese as your Endo suggested, makes me wonder if he/she knows what they are talking about !

I'm afraid there is no quick route to a definite diagnosis, it can take a while but try not to worry too much, you are on the way now and once both scans have been looked at together they should be able to give you some clear idea of whats what.

We are all here to help with any questions or worries so keep asking

Nelly

Nelly is right, Norma.

If your serum calcium has been "corrected" downwards (as mine always was) then your Serum Calcium is probably 2.5 or over, which is at the top end of the range.

If your body system was working correctly, the PTH measured at the same time as a corrected calcium of 2.48 would be at the lower end of its range, and certainly not 9 which is well beyond the top of the range for PTH (my local lab's range for PTH is 1.60-6.90 pmol/L).

My own serum calcium varied between 2.4 and 2.73 (range is 2.20-2.60). Most of the time it was around 2.5-2.65. My PTH peaked at 13, but was mostly around 6-8. I had 3 parathyroid adenoma removed recently.

Your PTH level is what is described as "inappropriately unsuppressed", so in my view you do have a parathyroid problem. Your Vitamin D is not bad at all at 70+ so at least they can't tell you you have secondary hyperparathyroidism due to a Vitamin D deficiency (as they insisted with me, which was absolute rubbish).

In your shoes, since the ultrasound was inconclusive, I would go for the MIBI scan. If something shows up on that then you will know what you are dealing with, and at least someone has ordered it for you - it took me 2 years to get a scan agreed to!

Don't be worried about it. I am the scaredest of scaredy-cats and I got through it. The injection was not a problem, I had no side effects from it, and the only problem was the boredom of hanging around between "takes" and trying to lie still long enough for the pictures.

Let us know what you are thinking as you go along - we're here to help if we can.

Tigerlily xx

Thank you both and I mean that from the bottom of my heart. You have both been lovely, and helpful Im beginning to understand a bit more now.   Right now I'm going through all the blood tests I've got here if I see anything of interest I'll get back to you. Truly greatful.             Norma.

Our pleasure, Norma - and do let us know anything else that you find on your blood tests.
Your Inorganic Phosphate level might be a little low in its range as well, which is usual in primary hyperparathyroidism.

When is your MIBI scan appointment?  I would go for that, if I were you.

Tigerlily xx

Norma
The worst thing about the MIBI scan is trying not to fall asleep and snore  
Good luck.
Amanda xxxx

Ditto everything being said here, Norma. Yes, even if that IS your serum calcium and not the corrected calcium, that PTH should still not be that high. I converted your numbers into US numbers so I could better relate, since I'm in the US. Your calcium in US numbers is 9.92. Your PTH in US numbers is 84.5. When my PTH was first tested, it was found to be 112.0, but my calcium was only 9.8. I had 2 tumors removed eventually. If your calcium is as high as yours is, your PTH should be rather low, and yours is not. It is way too high.

Audrey

Hi All, I've been to see the head of the practice GP today,as all this Parathyroid business is worrying me sick to the stage of me and my Hubby falling out, so he took me to the GP this morning.  I took the letter with me that I received off my Endo which was the begining of January, and would you believe he said they haven't received one.       Anyway after reading it he tried to put my mind at rest because my IBS is killing me.  When I asked about helping myself would you believe Nelly he said don't have to much milk and cheese or anything with to much Calsium .  Now can you see why I worry no one seems to no what's going on with me.  I'll update you all when I've had my next scan 23 Febuary.  But thanks for all your support. I've got to admit that the last post I got from Audrey I read last night and it really got me worried,hence another argument with my hubby.  Oh such is life.

The arguments with the hubby are a distinct symptom of parathyroid disorder, Norma, I'm afraid!! My poor husband had to put up with rather a lot over the last 2 years.

Hang on in there until your next scan and see what that brings.

You're not very much further up the map from Leicester, are you? There is an endocrine consultant called Miles Levy at Leicester Royal Infirmary who is very good at diagnosing parathyroid problems. I was getting the same runaround as you seem to be, so I made an appointment to see him privately initially (£200) at Spire Leicester in order to get someone's expert view on my situation as quickly as I could. He was then prepared to transfer me over to his NHS Clinic in Leicester for tests and an ultrasound.

You could go and see him as well, if you are prepared to travel to do so. So you do have other options. Another forum member called Sue is on holiday at the moment but she is from close to your area, so hopefully she'll be able to chip in when she gets back.

Keep us posted on your next scan results and try not to worry. I know it's easier said than done, though. I really do. 

Love from Tigerlily xx

Thanks Tigerlily my poor hubby really is Haveing a lot to put up with.   And thanks for that information about Endo in Leicester , he already travels to Manchester for my IBS, so I don't suppose seeing another part the country will bother him.  And like you say hopefully someone closer may be able to help.  Take care

It's good just to know there are other options sometimes when you are in a bit of a whirl with it all, Norma.

Keep us posted and have a restful weekend.

Tigerlily x

Hi,Nelly,Tigerlilly,and anyone else I last spoke to,I hope your all well.   I'm just updating since I was last on here.  I went on Friday for the        MIBI scan which I found as you all say very boreing,it took all day as we had quite a way to travel,from Cannock to Stoke all because of all the problems at Stafford.  Anyway it's done now and I did find it a bit of a struggle lying flat for almost an hour as I have severe IBS. But all done now wait for results in about 2wks.  I'm praying I've got no more problems.  I'll let you all know the results,but in the meantime thank you all for being there for me.  All take care

Well done Norma, glad to hear you managed it OK, we will eagerly await your next update with results.

Take care

Nelly

Hi Norma - soooo glad the MIBI went so well - very difficult sitting still with severe IBS I should think (often another symptom of primary hyperparathyroidism).

Do let us know what the results were when you get them - and ask us any more questions that you need to.

Tigerlily x

Thanks Both speak to you soon. Hopefully with good news.xx

Sorry I'm so late posting here.     I have not been on for a few days.  

Norma, I'm very glad you got the MIBI under your belt now!   I can imagine how tough it was to lie still for that long with IBS!    Very happy you got through it ok!

Looking forward to hearing the results!

Audrey

Thank you,little Audrey, I'm glad it's done with, but I don't know about looking forward to the results,unless there good. I've got enough health problems to contend with without anymore. I must say I'm a little worried.  Hope your doing alright. Take care

I can see why you are a bit worried about the mibi results, because many doctors and surgeons still don't know how to diagnose this disease using lab results alone. That is such a shame. I don't know why it's so hard for them to grasp this. I guess you have probably read that I only had 1 mibi scan. It was performed the morning or my surgery. Dr. Norman in Tampa had already diagnosed me using my lab results, I was scheduled for surgery, and made the trip to Tampa. That mibi performed the morning of surgery had negative results. Nothing was revealed with that scan. Dr. Lopez was not worried. He told me not to fret, that they knew there was at least 1 adenoma in there because of my lab results. There turned out to be 2 adenomas in there! I wish more doctors knew how to diagnose this darned disease! Fingers and toes are crossed for you!!

Audrey