Hi, I'm another Newby, hoping for help

Hi All

I have (controlled) epilepsy and have been taking an anti-convulsant called Carbamazepine for over 20 years. Every 6 months I have a blood test to check the levels of the drug in my blood etc. Last summer my pth levels were a bit high, so the blood test was repeated over and over again before my GP decided to refer me to a consultant at Southampton General. I had no idea what I was going there for and was under the impression that it was all connected to the Carbamazepine. It took months to get the appointment and I eventually saw an Endocrinologist in March. I was very taken aback with the fact that I might have hyperparathyroidism and totally in denial. I am 47 and haven't been through menopause and this appeared to be a bad thing! Anyway, I don't think I had any real symptoms, or if anything might have had a vague connection, I had assumed there was an answer elsewhere. For instance: to the question about depression, I believed I was down due to the fact that I broke my finger last November  in a really complicated way, including an avulsed tendon which now doesn't allow the finger to bend (which means that I can't ride/drive my horse in a safe way and need to sell him). I have had lots of bone or muscle aches and pains and seen a Chiropractor once a month for several years. I have been tired for years and was diagnosed as sleep deprived by a Neurologist when treating me for severe migraines and he prescribed me Amitriptyline to relax me so I can sleep at night - also stops me waking up to empty my bladder in the night. Whatever question he asked me, if it wasn't a 'no', I could justify the 'yes' with another reason. Once I got home, I had to google hyperparathyroidism because I couldn't remember many of the details.

I dutifully did the 24 hour urine test and last week had a copy of a letter to my GP in the post. This said that my Vitamin D levels were low as was my urine calcium level and I would need to be prescribed a high dose Vitamin D replacement. It also said I would need an ultrasound (13 May) and sestamibi scan (no appointment yet) and would be referred to the surgeons for a surgical parathyroidectomy. Help! When I got the Vit D tablets last week, it said on the leaflet not to take if you have high blood calcium levels or hyperparathyroidism... I had to request a telephone appointment with the doctor to clarify this, but he said it was perfectly ok and to take the pills. Obviously, I've stopped taking cod liver oil supplements because they contain Vit D and haven't really been doing much good apparently! He also told me to stop taking any other supplements so now I can't take glucosamine and chondroitin (and I really can't see why not). And now my vague heel, knee, hip, pelvis pains are much more intense. In the morning I can hardly walk when I get out of bed. Everything aches.

So I'm due to go back to clinic on 21 May and perhaps I'll find out more. I'm still confused by the whole thing. My blood calcium levels were never sky high apparently and on reading up about long term use of Carbamazepine, Google tells me it can cause Vitamin D deficiency... Do I really have HPT? 

Thanks for listening!

Brigitte

Hi Brigitte and welcome to the forum

Do you know your calcium and pth levels ? if not worth getting copies of them as it helps to keep track of whats going on.

I don't know about the possible connection between your meds and hpth so can't really help on that.

What I would say is that if your calcium is high then you don't want to be taking high doses of VitD as that will send it even higher, which VitD supplement have you been given ? hopefully not Alfacalcidol as that is the wrong one. You can take a low dose of a cholecalciferol but we are not convinced that is a good idea either as the body lowers VitD in response to the high calcium so trying to raise it may not be the best thing.

The others will be along to add their thoughts so don't panic we will try and answer all your questions, we have a good mix of people at different stages so lots of advice and support to be had, hang on in there   

Nelly

Hi Nelly and thanks for the welcome.

I have no idea of the calcium and pth levels I'm afraid.

I have been prescribed Cholecalciferol 50,000 units weekly for 6 weeks, followed by 8,000-1,000 units daily as a maintenance dose. It seems totally counter productive to me, but what do I know?!

Hi Brigitte,

Glad you joined us here! Sorry you're having so many health issues, but glad you found us. We are more than happy to help you in any way we can.

I was going to ask the same question as Nelly. We would need to know your calcium level and your PTH level to help determine whether or not you have hyperparathyroidism, and when you get them tested, make sure you get them tested at the same time, from the same blood draw.

I also agree with Nelly that if your calcium is high, you should not be taking vitamin D. It will raise that calcium level even higher, and you don't want that!

I am so sorry to hear about your finger and your horse. That is so sad. I am an animal lover myself. I think most on the forum are. It would break my heart if I had to get rid of 1 of my pets. I am really sorry.

Hopefully, we can help to get things all straightened out for you. I am very interested to see where your calcium and PTH levels are.

Audrey

Hi Brigitte (and Hallo Audrey in the US!)
Can't sleep at the moment so have popped into the forum for a while.
Welcome to our merry band and I'm sure you'll get some answers from our members.

Interesting that your 24-hr urine calcium test showed a low calcium reading and your medics are worried about that. Do you know what the exact reading was?

Audrey is right that it's most useful to have the readings for calcium and parathyroid hormone from the same blood draw and you can ask at your surgery for a print-out of the results of recent blood tests. They usually say "I have to run that past a doctor first" but I just say, that's OK, I'll collect a paper copy from you tomorrow.

You may not have had the chance to negotiate the whole of this site yet, but do have a look at the links in the Reference section. Another brilliant site is in the US www.parathyroid.com - the site of Dr Jim Norman of Tampa, Florida, to whom some of the forum members have been for their surgery. Look at the pages on Vitamin D and Advanced Diagnosis.

Do you know if your serum calcium level is above 2.5? Mine was when I was prescribed the 50,000 iu vitamin D3 (cholecalciferol) regime and it rose somewhat higher after taking the Vit D - to 2.73. As Nelly says, if the serum calcium is high the body tries to keep the Vitamin D low as a protective measure. Vitamin D encourages calcium to be absorbed in the intestines from food you eat, and in lowering the Vit D the body is trying to ensure you don't take in more calcium if it is high enough already. 

Pop into the forum as often as you are able, as there is a lot of valuable help to be had from its members. I am still struggling to get diagnosed myself despite a serum calcium that is high in its range at the same time as PTH is high in its range (2.49 and 9.something, at the last count).

See you here again soon, Brigitte.

Best of Wishes, Tigerlily.

Hi Audrey and Tigerlily and thanks for replying.

Quoting from the consultant's letter: Vitamin D levels are low with a 25-OH-Vitamin D level of 37nmol/L. 24 hour urine calcium is 5.40mmol/L and calcium/creatinine clearance ratio is 0.0165. The letter goes on to say this is suggestive of primary hyperparathyroidism and that the urine calcium is probably low due to a Vitamin D deficiency.

I don't really understand all this, even after googling it, so if anyone can interpret, I would be most grateful!

Thanks for your help.

Brigitte

That's strange, Brigitte, what they say about your urine calcium.

I thought the normal level for women was around 5, which is why mine seems high at 8.4. Assuming of course that I have the same units, but it looks as if I do.

Maybe they mean your calcium/creatinine clearance ratio is low?
Perhaps Edwin or Nelly can chip in here to help clarify this, or anyone else familiar with these levels.

Still, at least the letter gives the magic words "suggestive of hyperparathyroidism" - you lucky girl!! You have one clued up consultant there, I hope!!

Try googling Calcium/Creatinine Clearance on www.patient.co.uk and see if you can find some clarification there. It's a site I use mostly as it's written by UK doctors based on UK and European guidelines.

www.labtestsonline.org.uk is also very useful and they will reply to questions, even if they have not tested anything for you themselves.

Jasmine is in London today, but I'm sure she will reply to you as well. She has gone through rather a lot with this disease and therefore is a fount of knowledge.

Have a good holiday weekend - try and relax for a while before getting back on the horse!

Love Tigerlily xx

Neither Nelly, not I know about Calcium/Creatinine Clearance numbers, but I have put a calculator in the Reference Section, which may be useful.

Edwin

Cheers, Edwin - that'll be a great help.

Hope you're on track for a restful weekend.

Best of Wishes, Tigerlily xx

Thanks Tigerlilly

Have s good one yourself.

Edwin

Thanks for your help.

Searching on Google has found that the presence of Vitamin D deficiency is associated with worsened PTH hypersecretion and impairment of urinary calcium excretion. Since my clinic appointment is less than 3 weeks away, I might just as well wait and ask the consultant - I have a ton of questions for him and would like some answers! Apparently I have been referred to the surgeons for a surgical parathyroidectomy anyway.

Sometimes things happening around you make your own problems fade into the background. My elderly mother is ill in hospital 250 miles away and I need to get there.

I can't thank you all enough for your help and support. Writing it down and putting it out to people who understood was most therapeutic.

Many thanks

Brigitte

Hi Brigitte,
   I am so sorry to hear about your mum, it is not easy when we live a long distance away and I hope she recovers quickly and is soon home.  I know my stress levels rise trying to sort things out for my mother and I wish I felt a whole lot better to deal with this.  I feel pulled all ways sometimes trying to be everything to everyone.
Have a safe journey and thinking of you,
Sue

Yes, thinking of you, Brigitte - travel safely and I hope you Mum improves soon.
Love Tigerlily xx

So sorry to hear about your mother, Brigitte. It is awful being sick ourselves, but when a family member is ill, it is so much harder to handle. Praying for you both.

Audrey

Thank you so much. 

Brigitte

Hello again everyone 

I got back today from my visit to my mum. I'd hardly walked through the door when the hospital rang: there was a cancellation and could I come to have the sestamibi scan on Thursday! Of course I said yes and it's probably a good idea as I don't have much time to worry about it   

Yay! Good news Brigitte! Don't worry, it will be fine, it's not really unpleasant, just one of those things we HPT warriors have to go through, and once it's done you'll be another step closer to getting well again.

Hope all goes well, keep us posted.  How is your mum by the way?

Jasmine x

Thanks Jasmine, I worry about everything! 

My mum is much better thank you. She's been very poorly so will be in hospital for a while.

No, don't worry about the Sestamibi, Brigitte. It's not bad at all. Sure hope it detects something sinister hiding in your neck!    Don't be disappointed, though, if nothing is revealed. My Sestamibi was negative the morning of surgery, and just a few minutes later I had 2 tumors removed. Sometimes those little buggers really know how to hide!

Very glad to hear you got to visit your mother, and she is doing better! I'm sure that puts your mind at ease a bit.

Good luck on Thursday!

Audrey

Hi Brigitte

So glad to hear your Mum is a bit better. I worry about everything as well - I think it's a definite symptom of this disease!

I do so hope the sestamibi goes well tomorrow - keep us posted on what it reveals.

Love from Tigerlily xx

Thanks Audrey and Tigerlily

It's the fear of the unknown! I have the sestamibi tomorrow, ultrasound next week and the clinic the week after. It's all happening! Thanks for your kind words: it means a lot. It's so comforting to know there are people here who care and understand! I can't thank you both and Jasmine enough. I was going to say you wouldn't possibly understand how much it means to me, but then I know you do! Thank you.

Brigitte

Bless you, Brigitte - hang on in there and get all those tests behind you and by the end of this month you should be a lot further forward.

Come back here often and let us know how it's going - it's quite OK to offload every emotion here - we've done some good weeping, ranting and feather-spitting ourselves!

Tread lightly and take care of yourself.

Love Tigerlily xx

That's the sestamibi over and done with   The results go straight to the Endo so I don't know anything. I'm glad it's over and done with, because it was difficult to keep still as everything that could ache ached dreadfully. I was initially asked if I had neck problems. (I always have neck problems: in fact the only time I don't is when I have just been to the chiropractor!) She was quite put out when I said I did and said perhaps I should take a painkiller before the scan. Anyway, that's crossed off and I'm looking towards the ultrasound next Tuesday now.

Thanks for your kind words, Tigerlily. I tread lightly because my heels hurt!   

Brigitte

Great stuff, Brigitte - cross 'em off one by one.

Good luck next Tuesday - should be a cinch!

Tigerlily xx