Nothing from Mibi or Ultrasound

Morning all,

Just had my U/S with no PTH gland in sight, same with my MIBI! I might be sent for an MRI, just waiting to hear.

I wasn't expecting to hear anything positive but once again I feel gutted! I don't know what else to do from here! Had a terrible headache past couple of days with scratchy throat!

  

Xx

Don't despair, Lucie. I know that feeling of defeat all too well, but there is always hope! Don't forget I had a negative scan too and then had 2 tumors removed!!

I have trouble keeping all of these stories straight, so I need to ask, have you ever contacted Dr. Norman to get his opinion? If you could get him to diagnose you, you would have that to try to help convince your doctors you do have HPT. I don't know if that would help, but it couldn't hurt, right?

Chin up!!!!!       

Audrey

Hi Lucie

Sorry to hear that nothing showed up but as Audrey says these tests are sometimes not definitive.

I've looked back at your previous posts and all your test results and what stands out are the consistently high-in-the-range calcium (and corrected calcium as your albumin is always high, as mine is - generally a sign of good health, so I'm told!), a lowish ALT just the one time, and your 9am cortisol was low-in-the-range.

Endo's would probably look at these results and say that as they are all within range (just about) they are "normal". But I agree with you that with such a high-in-the-range calcium your PTH should be very low in the range, if the system is working normally.

My calcium and PTH results are about the same as yours over a period of time, although my PTH has shown a rising trend and never has gone back to low in the range. I've been diagnosed now with Normo-calcaemic Primary Hyperparathyroidism, and wonder of wonders, a 17mm x 6mm x 4mm PTH adenoma showed up on ultrasound.

Have you discussed Normo-calcaemic Primary Hyperparathyroidism as a possibility with your endo?
It might be worth doing. It's something of a new entity in the UK, in that not all doctors or endo's seem to be able to recognise it. I went through quite a few who didn't!

Another thing that might be worth looking at is your pituitary function. I know this is a bit of a hobby-horse of mine at the moment, but it might be worthwhile having your pituitary hormones checked to see if any of them are very low indicating a pituitary issue: ACTH, Growth Hormone, IGF-1, and Prolactin. Add in FSH and LH if you can, and, in the light of Audrey's recent posts, aldosterone and renin, too.

Also, I see you have been offered an MRI. I'm having one on Thursday this week to try and rule out (preferably not "in"!!) a pituitary issue, and I wonder if a general head MRI might be useful for you as enlarged parathyroid glands sometimes do show up on an MRI. I'll be asking them to have a look at mine on Thursday as well.

Just a few thoughts - but your head/eyes/headache symptoms as you describe them could indicate a pituitary issue.

Let us know how you think you'll proceed on this.

Love from Tigerlily xx

PS  You could also invest £250 and book a private appointment with Mr Fausto Palazzo who runs the Hammersmith Endo Centre which is very highly regarded. He should be able to tell from your blood test results what is likely to be going on. You would get an private appointment with him very soon at the Princes Grace Hospital in Baker Street, London, if he is not away on holiday. An appointment with him might either put your mind at rest, or reveal something for you.

Hi All

Thank you for all your feedback. I'm going to email my consultant soon and ask for the MRI. 

Tigerlily I had a look at the Pituitary Adenoma symptoms and I can relate to some of the symptoms but not as many as HPTH and like you say my calcium stays elevated and PTH isn't in the lower range.

I'm going to get a GP appointment tomorrow and request blood tests again to see what my CA & PTH levels are,  as well as my Thyroid. 

Oh when did life become hassle lol!!

Xx

Just to add to this I've had a Short Synacthen Test which was fine.

Thinking on this, I think I'm going to ask the consultant if he's willing to do all these blood tests again for me, I'm paying private so I'm assuming he would?

Hi Audrey

Sorry to keep adding, I haven't tried to contact Dr Norman and wouldn't know how too to be honest   

Xxxx

You can email him but not sure it will help, if he did diagnose hpth you will still have to convince an endo over here, that can be tricky as you are finding now.

Nelly

I suggest you do the blood tests, Lucie, if you can get agreement to them and as you will be paying for them, I can see no reason for them to be refused.

Dr Norman is unfortunately not held in high regard over here - he may be brilliant but he comes across as a bit pushy!

It may be best to work from the inside of the NHS establishment over here. As I said earlier, Mr Fausto Palazzo at the Hammersmith Endo Centre seems to be the man of the moment for diagnosing HPT. Let me know if you want further details of how to contact him.

Good luck with the blood tests and let us know what comes up.

Love from Tigerlily xx

Thank you all.

As agreed, I think a diagnosis from an expert across the pond wouldn't sit well with our consultants.

I have emailed my consultant and asked for the MRI and blood tests, I can't see him saying no as I am seeing him at the private hospital. I was due to see him Fri with MIBI and U/S results but suggested it would be a waste of time having been told there was no Parathyroid seen so hopefully he will arrange MRI and blood tests then go from there once they have been carried out.

Lucie xx

Sounds like a good plan, Lucie.

If he asks why the blood tests, mention that you'd like to check your pituitary function in order to rule out a pituitary issue, because the pituitary is the next step up in control of the thyroid hormones, the parathyroid level, the adrenals etc. Mention the head pains and the headaches. Anyone with headaches which occur relatively suddenly and which are not their normal type of headache should be investigated.

I would also say that you have heard of Normo-calcaemic Primary Hyperparathyroidism and that you wonder if this could be your problem.

Good luck and keep us posted.

Love from Tigerlily xx

Lucie I'm sorry nothing showed up in the scans: though it doesn't rule HPT in, it doesn't necessarily rule it out either. I would suggest that you try for the MRI and the blood tests and if you're still getting nowhere, Tigerlily's advice of trying to get inside the NHS establishment would seem sound. After all, you're trying to get understanding and clarity here in the UK. I think that if I didn't know I was on the (apparently long) waiting list for surgery, I would have gone down the route of seeing FP privately. Maybe that is worth consideration. 

It seems that everything is a fight in getting diagnosed with HPT sadly. I'm sorry you're feeling so discouraged, but don't give up yet! Good luck. 

Too much happening in this thread when I'm so slow! I'll post this anyway and say that Tigerlily offers brilliant advice. Best of luck with what you decide. 

Love and hugs 
Brigitte xx

Hi Lucie,
I am so sorry to read that they didn't find or see anything on the scans, but please don't let it get you too disheartened.  I am sure it must be like looking for a needle in a haystack and I also think a lot of luck is involved with finding them.  I read so many times that negative scans are common and that they do not rule out HPTH.  It just seems to me that this condition requires many knock backs and takes forever to get some answers before progress is made.  I hope they give you an MRI to see if that can show anything.
Hugs Sue

Tigerlily, whether or not you all are a big fan of Dr. Norman, he ALWAYS answers his email, unlike the famous M the K over there! I emailed him once before I was diagnosed and never heard a thing from him! As desperate as I was for a diagnosis, I would have emailed the devil had I had his email address and I thought he might diagnose me!!

Lucie, if you'd like Dr. Norman's email address, just let me know. I'll PM you with it if you're interested.

Audrey

Yes, you're right, Audrey, he does answer his mails. I must have just got him on the wrong day when he sent me that blistering email about "corrected" calcium!

Now you've reminded me about M the K, I need to tell him that I've been diagnosed with primary HPT. He gave me the old routine of "getting old, old girl" and there's no way in the world you could have pHPT!!

I shall enjoy composing an email to him and sending him the US image of my adenoma!

Love from Tigerlily xx

You can compose it during your MRI Tigerlily! The satisfaction of choosing your words will keep you still  You only have to remember the blistering words you used later..... 

Love 
Brigitte xx

I'm a little worried of more rejection from Dr Norman - I used his PTH Calcium App and it said I wasn't likely for HPTH. You think I'd be used to it by now  

Oh Lucie, I understand how you feel, but on the other hand, Dr Norman might have something helpful to say so it would be worth contacting him. And it's never so bad getting a knock back via email or phone than in person because no one can see your reaction. Also, it still might be worth you trying to see FP privately, so that's another thing to think about that might hopefully make you feel as though you have more options. 

Sending lots of cyber hugs to support you and cheer you up   

Love 
Brigitte xx

Well, Tigerlily, I can certainly understand your feelings. Had I received an email of that type from Dr. Norman, I would be ticked off too! I think that is another care of doctors automatically thinking we're all stupid because we have not been to med school! I don't know why they all think it's so hard for us to comprehend things. We are humans just like they are, and we all have brains!

I have never had the pleasure of speaking to or corresponding with Dr. Norman on a bad day, thank goodness, and I hope I never get that chance!   

Have fun with your email for M the K. I would love to see his face when he reads it and gets a glimpse of your adenoma!! And they think WE are stupid?!

Audrey

OK let's go for it    Audrey if you could PM me Dr Norman's email?

Thank you

Oh well, my Consultant has decided not to go for the MRI and from what I can gather from his Secretary's email, won't repeat the bloods   

Lucie

Yes, as I thought. I contacted his secretary and asked if attending the appointment next week will be a waste of time and she advised Mr Smith insisted no further testing needed, that's the end of that then! I don't know why I still get so upset with responses like these - I don't know what else to do! I'm using my private healthcare for this and I can't see how they would authorise another Endo Consultation elsewhere!

Oh Lucie it's rotten that these people are dismissing you so quickly. Following my op after my calcium rose back up to the same level as it was before and PTH mid range so that is the same as before. I had mibi and CT nothing has shown up, I've not had US as my Endo is convinced I've got FHH and I'm waiting on genetic testing so she's stalling doing much else other than blood tests. 
M the K did my first op and when my calcium rose he initially said looks like another one in there, then calcium dipped slightly and he got all wobbly and said he wasn't sure and to go see Endo. This is now over a year later and I'm still in limbo land with other problems like pituitary and thyroid being questioned as well.
I did email Dr Norman and he was vvvv abrupt and virtually said your dr's are all idiots, you can't still have high calcium if you are cured, you definitely have another one in there.
I sent this to Endo and GP, Endo ignored it GP thought it was rude and unprofessional, neither actually took note of what he was saying.
But if it is proven I do have another in there I will deffo bring this up and point out what he said.
If I were you I would email him it doesn't cost and you can't feel much worse than you do so it's worth a try.
Lots of love 
Amanda xxxx

Hi Amanda

Thank you for your reply. Sorry to hear it's still an ongoing saga for you. 

I think I will email Dr Norman, trouble is I'm so used to being told "you don't have HPTH" that I'll be scared to open his email LOL but what have I got to lose?! Do you have a contact email for him? I know Audrey mentioned she had his details. I've also asked Tigerlily for FP email also.

I'm annoyed I had the MIBI and U/S, waste of time and use of my private healthcare! 

Thank you xx

Hi Lucie
The email add I have is jgnorman@tampabay.rr.com
I hope either JN or FP are helpful.
Sorry I can't remember what symptoms you've got, what was the answer the Endo gave you for having these. They can't just dismiss you and say no more tests, something is causing you to have these. If it isn't PTH then they need to find out what is.
Good luck
Amanda xxxx