Monitoring option- thoughts most welcome

Dear all,
I am awaiting conformation from the hospital regarding what we are doing next, My GP is also actively involved and has been chasing this up. It look like the hospital want me to go back to GP for regular monitoring – I just wondered if anyone else is having to do this. I have been told it will likely be blood tests, every 6 months.
 
If anyone else is going through “monitoring” I would like to know what is tested , duration of test eg yearly, 6 months etc and whether this was your choice to monitor.
 
The only info I have is that my vit d is now normal at 88, PTH has gone high and was 15 in Jan 2013 and now 10.98 ( ref range 7.5 ish) by highest level last year was 11.7
Calcium I don’t have all results, but seem to be high end of normal at 2.49 ref range up to 2.50
Hospital said something about regular calcium bloods and when this got higher I would be returning to “their care” – I have said monitoring isn’t my choice and surely I am just putting off parathyroid surgery ? but my wishes are being totally ignored.
 
I am due to see GP next week, to finalise things, any info regarding “monitoring “ option would be usefull. I have asked for a dexa scan as I get a lot of bone pain, again I was told “ we will think about it “
 thoughts most welcome.
Best wishes
 
Lozza

Hi Lozza,
My heart goes out to you, your blood tests clearly show a problem and they seem to be unable to offer any help or treatment.  I think I wold ask my GP to refer me elsewhere, possible to Leicester to Dr Levy.  I would ask for monthly blood tests to establish a running pattern and see how they go. I would also ask what are the benefits of  this approach to you as a patient???  I would also ask your GP to refer you for a Dexa Scan so that you have a benchmark to work from and see what he says.  I really feel for you and I know it is easy to say but you will find the strength to keep pushing on, be a squeaking gate!!!
Hugs Sue

Hi Lozza
I have been on the wait wait wait list to. I know I am somewhat complicated. It seems like it been yes you have it no you don't yes you do. I do have labs run pth/ca vit D 24 hour urine, I have been scanned  dexa , sestamibi, MRI'S.  doc has dx me with phpt but my next appointment is in Dec,  I am glad my symptoms are fairly mild, or I would have a screaming fit. I know adenomas grow very slowly sometime I think these doc 's like you to wait to see if a scan can get a better visual on it. I really think that's is  wrong. But I  do think there is a method to there madness. Good luck and know you are not alone in this.         Kathi

Thanks Lucy / Kathi, and everyone

i agree that i think there is more going on and there is probably a good reason for wait and see. The scan did show the parathyroid is within my thyroid.

 I did read on Dr.Normans website that people with b12 problems can have the PTH glands produce more calcium as you are unable to produce this. So might be something else to discuss with GP as i have regular b12 injections as body unable to keep b12 in me. My PTH levels are high at 15, but this was when my b12 injection was due, level of PTH seem to be lower when i have had injection ( still above normal, mind you)

I guess this parathyroid problem is just very complex and in a way i do want to cover all bases. It would just be good to have some clear guidelines with all of this.

best wishes

Lozza

Ah, yes, the old wait and see plan. How sad. Lozza, if they spotted the tumor inside your parathyroid inside of your thyroid, I'm assuming it must have been a tumor, right? If so, what are they waiting for? Maybe the stars to align? I don't get it. Would you mind posting your calcium levels and PTH levels as they were revealed? I mean, post your calcium levels and post the PTH that was revealed with each. If you already have done this, I'm sorry I missed them. I'm so exhausted anymore, I can't think straight at all! I was out today and forget where I was going twice!!! I actually got to the end of my street and turned left instead of right, and I was going to a place that I have been going to for 40 years!!!! I don't know how long a body can survive on 5 hours or less of broken sleep, but it's going on 4 years for me now, and I think my brain cells are dying!!   

Audrey

Hi Audrey,
I know the confusion very well. In march, i made plans for my sister birthday, i couldn't remember the date, just that it was when the clocks changed. so there i am planing my sisters big day and then Mum asked me " why was i getting so stressed out about it all" i said " well it is soon" my mum was really shocked as Sisters birthday is in October , not March all i could remember was that it happened when clocks changed . My Sister would have killed me, as i would have been 6 months early !!!!

PTH 11.7 ref Range 4.5-7.5
Calcium corrected 2.55 Ref Range 2.20-2.60 

PTH 10.98 ref Range up to 7.5
Calcium corrected 2.48 ref range up to 2.50

PTH 15 ( this i was told recently from registrar over phone, didn't tell me calcium )
The ref ranges are different as done in different towns.Lowest pth has been 7.50( all pth have been high,other than the PTH of 7.5) calcium just under, just over reference range.

I have sent off for copies of all bloods, clinic notes etc, so far not heard anything )

Clinic appointment was 23rd May, GP and myself awaiting letter as to what is happening next. I have made appointment with GP for thursday 19th june, i just hope we have heard from hospital as GP wants to move this forward. Which i think is a good sign.

Once i have copies of everything i was going to get second opinion, i am keen to see what the calcium levels was for the PTH at 15 !!

Confusion, this is one of the worse thing, i totally understand about forgetting things.

Does anyone else get moody swings, i feel like i am up and down like a yoyo ?

thanks everyone, for keep me sane.

best wishes

Lozza

Mood swings turn me into demon bitch from hell! When I'm up I'm really up and I can tell I'm driving people crazy but can't stop, I've done a lot of blubbing when I'm on my down days - surprised anyone is talking to me!

That is me too, some days I am ok, some days I am keeping Kleenex share holders very happy.  Slightest thing can set me off, at the moment its the dirty little stop out Miss Lucy, I think she is going to pull an all nighter on me, it is a big bright moon and warm and no sign of her as yet.  This is worse than when the kids were home and I would stay up half the night waiting for them! I just don't like her out at night.
Sue x

Thanks for posting your levels, Lozza. I hate to be a pain here, but since we don't use corrected calcium here in the US, and I diagnose solely by serum calcium, would you mind posting those?

Did you like that comment? I diagnose?! Funny, huh? You all are making me believe I actually am a doctor! Hilarious!

As far as being emotional, I think I can take the crown for that. My gosh, I cry if the mail is late! Just kidding, but I do tear up for no apparent reason, and I just can't help myself. I often wonder if it's because I have not slept for more than 5 hours for years now, and I think I'm just so darned exhausted, I'm emotionally shot and just can't control myself. At least now after surgery I can sleep for 2 or 3 hours at a time during those 5 total hours. Before surgery I would wake up at least once an hour, every hour! I guess things are getting better. I would give ANYTHING to be able to sleep for 7 straight hours again!!

Dr. Aud   

Hi Lozza

I think our fave hospital is at this point overwhelmed with PTH patients and probably has no option but to make them watch-and-wait, especially in cases like yours which might look a bit tricky to those left behind after the departure of Mr Wishart to the private sector. I really don't think that they have a well-experienced PTH-endo-surgeon to refer people to in-house.

And I think it is very shabby the way you are being treated there - and me too now that I also have US proof of an adenoma.

I think your plan to pursue this with your GP is very sensible and getting a second opinion is surely a must for you now. In your shoes I would get myself referred straight to Fausto Palazzo at the Hammersmith Hospital. My gut feeling is that he is the man of the moment for this type of investigation/surgery.

There are others, however:
Greg Sadler in Oxford (but his secretary told me there's no guarantee that he himself would operate, as it is a teaching hospital); Donna on the old forum had good things to say about Mr Sharma at St George's, Tooting, and his associate endo, Dr Panalhoo (if I have that right). And there is a Polish endo surgeon with a name beginning with K mentioned on the old forum - I'll try and find his name. And I think a Jan on the old forum had a good result from her surgeon in Birmingham.

I'm not sure if Mr/s Admin have posted Simon's old list of surgeons in the reference section here.

So you do have choices, Lozza - the best one to make in my view would be not relying on Addenbrookes any more!!

The Clinic Co-ordinator's number I think is: 01223 217536. I put a call in to her yesterday to chase up my post-clinic letter, as I was there on 29 May and my GP hasn't received it yet either.

Good luck with pushing this forward, Lozza - keep us posted.


And Dr Aud - maybe your sleep-wake cycle is totally out of synch by now.
Have you thought of trying melatonin to try and re-establish it?
Just a thought.
 Meantime - have a nice cat, my Dear:   They usually help!

Love to you both from Tigerlily xx

Dear all thanks for advice.

The moody swings are the most annoying out, having a hormone problem is horrible, I guess we really don't have any control on the yoyo.

Meggy, I think  we are all " the demon from hell" understand that completely.

Sue- I do hope Miss Lucy came in last night, "Dudley" my cats likes being out as it is too hot for him and I can spend ages calling him and he will being hiding in the garden.

Dr Aud, I will have a check at calcium levels and get back to you.

Tigerlily- thanks for info about where to go next. I will chase up clinic letter next week, really I just want GP to have the update, than I can discuss with her. I think Mr P, certainly seems to best person to see. I just would like copies of all the test before I contact surgeons.
Can I ask, is Mr P also endocrine as well as surgeon, or do you see someone else in his team.

You are all quite right I do have choices.

thanks everyone, have a good weekend and hopefully lots of sun.

Lozza

Hi Lozza - just thought I'd let you know that my letter detailing my last Thyroid Clinic appointment was typed 03 June and arrived at GP's on 11 June, so yours should be on the way, too, I should think. Not sure about the blood test results you have requested - they might take longer.

Because I stamped my foot last time and showed them the letter from the local Rheumatologist diagnosing normo-calcaemic pHPT, they have put me for an ultrasound. I range the US department today (01223 216 455) and they explained the procedure for having one.

The consultant radiologists (2) only come in occasionally and they have to review all the notes/bloods etc first before they recommend an US scan. All that takes about 2 weeks and then you are invited (or not - as I probably won't be either!) for a scan, probably in about 6-8 weeks, if not regarded as urgent (as mine probably won't be).
So (a) I'll be lucky to get one and (b) I'll be lucky to get one before September at that rate!! So I'm not holding my breath ....

Jasmine will know better how FP runs his show. I think both you and I are now in a position to bypass any other endo's and go straight to FP the surgeon. He has endo's at his disposal within his team at the hospital, I'm sure.

Yes, have a rest from it all over a nice sunny weekend.

Love from Tigerlily xx

Hi Tigerlily,

Thanks for info. I will call GP later and see if letter has arrived. As for their ultrasound, do they like make extra work for themselves, Good on you for getting an ultrasound referral ! this is getting like war and peace.

all the best with Mr P appointment next week, in away it is what he says that I would take notice off. Not are local healthcare provider!!

best wishes

Lozza

Just a quick update, rang GP this morning, she has got a letter from hospital regarding my last appointment. I am still awaiting a copy, but at least we can review together when I see her on Thursday.

Also copies of all my medical test reports are awaiting me, they came this morning whilst at work, so will read over the weekend. So hopefully I will be able to move forward.

best wishes

Lozza      ( had to put some cats pic in  )
ps good luck to everyone having medical appointment next week.

Hi Lozza

Mood swings aside, (or not as the case may be!) just wishing you the best of luck in your moving forward. You certainly seem to have options, so hang on to the positive vibe! 

Love
Brigitte x

Great  news, Lozza - so glad you have now got all the necessary paperwork!

Next week will be an important week for you.

Love from Tigerlily xx

Tigerlily, thanks for the cat. Cats make everything better, don't they?

Yes, I have tried melatonin. It seemed to help a bit for a little while, but then I read that a possible side effect is muscle cramping, so I stopped taking it, as I was having a TERRIBLE time with muscle cramps for a very long time. Don't know if the melatonin had anything to do with the cramping or not, but I wasn't taking a chance. Thanks for the suggestion though.

Had my cortisol and prolactin levels tested last week. Don't have the results yet. If those both come back normal, my next move is to test for Lyme disease. Whether my remaining symptoms are from HPT or not, I WILL figure it all out!

Audrey

No, worries, Audrey - but you can prescribe cats for me any time!

Good to know you've had the new tests done. I came across something else recently in connection with pituitary disorders and also relative to all you ladies who are - ahem - peeing a lot and drinking a lot of water.

If you are excreting more than 3 litres of urine a day, you might want to look up "diabetes insipidus". There are some details about it on www.patient.co.uk, I think.

It just struck me because a number of forum members have had to measure their urine excretion lately and I noticed that quite a few of you were managing quite comfortably to exceed my paltry 1.48 litres by quite a bit!

I hope it's not at all important - just another idle thought.

Love from Tigerlily xx

Thanks, Tigerlily. I do pee a LOT! I am always thirsty, and I always drink a lot, thus the peeing issue. If you recall, I needed 2 jugs for my 24-hour urine test. However, I have been tested for diabetes several times because of that, and it is always negative. Nobody can figure me out. My body never makes any sense AT ALL!! Thanks again for the suggestion though. I greatly appreciate them all.

Audrey

Cheers, Audrey - would that be diabetes mellitus you were tested for?
Or diabetes insipidus?

Just checking!!

Love Tigerlily xx

Well, as much as I can remember (and sometimes that not very much at all!), it was diabetes mellitus. I just assumed the doctors would have thought to test for everything that could be causing my excess thirst and urination over the years. Maybe they haven't. Maybe it's time for me to ask about this. I have been thinking maybe my remaining symptoms have something to do with the pituitary, so maybe it's time to inquire. However, I have a terrible problem with peripheral edema, and I don't think that could be a symptom of diabetes insipidus. Then again, I do believe I have more than 1 issue going on with my stupid body right now, and, like I said earlier, my body never makes any sense, so who the heck knows?!

Thanks again for the suggestion!

Audrey

http://www.patient.co.uk/doctor/diabetes-insipidus

It's worth checking out, Audrey, see above link, as there seem to be connections with pituitary disorders.

My pleasure, m'Dear!  Just hope you haven't got it though.

Love Tigerlily xx

The endo I had before this one was always checking my blood sugar I do think he was into diabetes more than phpt . He told me my A1C test was higher each time it was tested. I asked him if I was border line type 2 he said no but to watch it as it was creeping up. My endo now said he wasn't worried about it. I do think having hyperP does elevate your blood sugar,JMO.

Lozza and Audrey,
It seems parathryoid disease has had the opposite affect on me. I can't cry. My emotions seemed to have been dulled and I really dislike that. Lozza, your PTH definitely seems high to me. I hope you get some ansswers and get them in a timely mannner.

Nancy

Tigerlily, GREAT link! Very interesting info. wouldn't it be something if all of my stupid remaining symptoms were being caused from a pituitary tumor? I have been wondering about this for some time now.

Nancy, that is strange about the crying. I guess we're all different, but all of this struggle, and all of the symptoms have certainly caused me to be very emotional always. Maybe you're a lot tougher than we are.   

Audrey