Parathyroid Disease and Giant Cell Arteritis and that strange headache

[url=http://books.google.co.uk/books?id=FVfzRvaucq8C&pg=PA1922&lpg=PA1922&dq=parathyroid+disease+and+giant+cell+arteritis&source=bl&ots=x-9QtTV7XR&sig=s9xoOUWl89BoTa6NPwmwwbtC0pM&hl=en&sa=X&ei=V-zkU871ManL0QX3pIH4DQ&ved=0CFkQ6AEwBQ#v=onepage&q=parathyroid disease and giant cell arteritis&f=true]http://books.google.co.uk/books?id=FVfzRvaucq8C&pg=PA1922&lpg=PA1922&dq=parathyroid+disease+and+giant+cell+arteritis&source=bl&ots=x-9QtTV7XR&sig=s9xoOUWl89BoTa6NPwmwwbtC0pM&hl=en&sa=X&ei=V-zkU871ManL0QX3pIH4DQ&ved=0CFkQ6AEwBQ#v=onepage&q=parathyroid%20disease%20and%20giant%20cell%20arteritis&f=true[/url]


I don't think this link will work, but I've just found a connection between parathyroid disease and Giant Cell Arteritis - and on the same page it mentions the rheumatoid effects of parathyroid disease which sound like the neck, shoulder, back and hip pain that Amanda is experiencing.

I had to get Peter to cart me off to an emergency appointment at the GP's last night because of this awful head/face/neck/jaw/shoulder/sinus/roof-of-mouth aching that I've had intermittently together with this, for me, untypical headache since early May - and I've read on the forum that a number of us have this untypical headache. I had had a lie down flat on the bed for about 20 minutes, but I was really uncomfortable lying flat on the back of my head, and when I got up the headache was much worse. Also, and this is a bit weird, the most comfortable position for my jaw and the roof of my mouth was with my mouth half open.

I got the Registrar at the surgery, but I usually do well with them because their medical knowledge is nearer the surface, so to speak, and they are well up on the latest information. She diagnosed possible Giant Cell Arteritis so I've been looking it up on patient.co.uk.

Giant Cell Arteritis is an inflammatory condition thought also to be an auto-immune thing, so anyone with Hashimoto's thyroiditis or who has had Graves could be a candidate for it. If your C-reactive protein is high and you have a high ESR, plus the untypical headache, that is indicative of the condition.

Just throwing this into the mix for the headache sufferers amongst us. I don't think it really applies to me as my inflammatory markers have never been even high in the range, let alone well beyond it, but I'm happy the Reg is thinking on her feet, so to speak. If it gets ruled out, then I'd be happy for her to continue trying to find out what's causing the head/face/etc aching/pain.

Amanda - you might find a TENS machine useful for when it gets as bad as it is now for you. Boots sell them quite cheaply these days, I believe. Any port in a storm, eh?

Love from Tigerlily xxxx

Here's a better link to GCA and PMA (can't remember what it stands for now - Polymyalgia Rheumatica, I think which is the course of the aching shoulder/back/limbs etc.).

The two conditions are linked:

http://www.netdoctor.co.uk/diseases/facts/giantcellarteritis.htm

Love Tigerlily xxxx

Omg Tigerlily.
I have had vasculitis of the bowel about 18 years ago, they took out my appendix because it mimics appendicitis. 
I'm wondering if something is still going on in my body. It says a bereavement or trauma can set it off, I lost my Mum less than 2 yrs before that and then gave birth to my daughter 2 months after she died. So quite a lot of trauma !!!!
However I think all my inflammatory markers have been ok since. I will check them as soon as I can stand up and walk around without being in agony and sort out paperwork.
So sorry you have felt so unwell and I do hope you get this sorted, I know how awful it is to have that constant agonising headache, it's the worst thing.
I think I will have to get a tens machine as this is happening more and more often.
Thanks for all your help and hope you feel better soon.
Lots of love Amanda xxxx

Thanks, Amanda - that's s uch a coincidence about the vasculitis and the bereavement/trauma connection.

Yes, my inflam markers have been OK which is why I don't think I have GCA, but the odd headache is suspicious for both of us. And your aches are very much like those of Polymyalgia Rheumatica, which can be linked to GCA.

But then again, there is also a link between pHPT and rheumatic pain, so maybe best to get that sorted first!

That's my plan at the moment. See Fausto's team on Wednesday, tell them everything, and try and get the adenoma out first.

My current headache is so untypical for me, as headaches go, and it's not as "banging inside the head" painful as my usual headaches (that I don't actually get too often). It feels sometimes as if my meninges are on fire (!!) and it has hurt to comb my hair. The other symptoms are intermittent, but the head-ache is in the background all the time.

It just got too much yesterday after I had lain flat in bed - that's supposed to help cure it!! - that I had to see the GP about it, and they came up with the possibility of Giant Cell Arteritis.

More stuff to think about!!

Lots of Love, Tigerlily xx

PS Am having a de-cluttering session atm and trying on outfits for The Ritz - makes me feel a bit better!

Yes I'm still in limbo land re pit problems and blasted FHH. Until I get answers on them it's difficult to try to sort anything else out. My headache is always back of head and neck radiating to top and around the front and is severe squeezing thumping pain.
De-cluttering sounds fun make sure you keep that Ritz outfit at the ready. I'm having trouble standing and sitting so I'm not up to dancing on any tables just yet.
Love Amanda xxxx

Oh, my goodness, Tigerlily, I am also very sorry to hear about all of your pain as well! This is so awful! So many of us suffering so badly. It's just not right! I do hope you are feeling better today. Please keep us posted.

And, by the way, when we are well again and feeling wonderful again, I have decided I am going to cross the pond and join you all at the Ritz!!! How could I not celebrate with the people who have kept me afloat throughout my journey on the sea of misery?!

Onward we go!

Audrey

Thanks for caring, Audrey - we are a lot of old crocks at the moment, aren't we?

My head pain has eased off somewhat today, but I still feel a bit queer (well .... queerer than I normally do!).

I thought I would just post some blood test results to demonstrate what Jasmine neatly called the consistent inconsistency that they can sometimes show:

Serum Ca 2.39 / 9.56  (range: 2.20-2.60)
Serum Albumin 46 /L   (range: 35-50) - the lowest mine has ever been
Corrected Ca  2.34 / 9.36 (range: 2.20-2.70)
Vitamin D  78.5 nmol/L   (good that mine raised now - I take 2,000 iu Vit D3 daily)

BUT:

PTH 7.91 pmol/l  (US: 74.59)   (range:1.60 - 8.90)

Some GP's and indeed some endo's would look at the serum calcium and say that's really good, middle of the range. Then they would look at the PTH and say it's high, but only just out of the top of the range.
Whereas I'm waiting for surgery to remove the 1.7cm x 6mm x 4mm that showed up clearly on a recent ultrasound.

This is probably just one of those times when my calcium has dropped down into the normal range. In fact, I've stopped taking cow's milk in tea/coffee over the last 2 months or so and have watched my calcium gradually drop over that time, but the PTH is still raised. In fact, this last set of results came back with the PTH raised as high by the lab.

This highlights a point for those forum members with worryingly high calcium. I wonder if you are using cow's milk in teas and coffees and reducing it or cutting it out might help? I had a maximum of 4 coffees a day (and don't drink tea) but I like them quite weak and milky, so I've changed over to Almond Milk or Rice Milk (from the supermarket, but not the one with added calcium!). Just an idle thought.

Audrey, I'm sooo pleased you plan to join us at The Ritz when we all get fixed!! Like Amanda, I'm not up to dancing on tables at the moment (and neither are you, my Dear, by the sounds of it - so sorry you are suffering so) but the prospect never fails to cheer me! Let's hope we don't all have to be wheeled in at 96 in our bath chairs to keep the date!!

Lots of Love from Tigerlily xxxx forgot the cats, need cats          

I'm glad your head pain has eased a little, Tigerlily. I'm sorry I missed this post but my brain probably wouldn't get past Giant Whatnot and make any sense. I think your body is fed up with waiting and complaining to you to get your attention! It must be comforting that your endo appointment is nearly here; you must have so many questions to be answered. Including your consistent inconsistent bloods! 

It's interesting about your milk alternatives since I have tried that and my calcium still stays about 2.79 whatever. I just had bloods done on Friday so it will be interesting what they show. I have been plotting what I eat and drink in an app and trying to keep an eye on how much calcium I'm putting in my body for months now.  

It's strange how many of us seem to be suffering extra much at the moment. As well as bleeping HPT crap, I've been having problems with my other disease and it's been suggested that the best thing I could do for that would be to take part in a Study at University Hospital Cardiff. However I can't do that until I've had surgery and allowed 5 weeks of recovery time. Ironically, the Study is running out of time and unless the Surgery is soon, I'll miss out on it. Typical. The HPT symptoms are just too much at the moment. Chronic constipation is not something I recommend, though if my GP hasn't been a wuss in his letter to the surgeon, it could be a way of getting near the top of the surgeon's operation list. I don't have much faith in my GP, though he did say he'd keep in touch and tell me of any response from his letter. 

At this point in time, it's difficult to see any of us dancing on tables!! I really hope it doesn't take until we're 96!! Not to dance on tables, but to go to the Ritz, just to make that clear

Hope you feel more yourself (whatever that is!) than a bit queer very soon. 

Love, hugs and          
Brigitte xxxx  

Dear All,

I am so sorry that so many of you are in such horrible pain, what with Amanda's back, Tigerlily's head and Dr Aud's ears and poor Brigitte stuck waiting for surgery. I sincerely hope things improve fast for everyone.

It would be amazing though if Dr Aud can come over the pond to the Ritz! That will be some party.      

Tigerlily - wow, your results are so similar to mine. I too am on the almond milk, though I now switch to dairy for a week before blood tests which explains my latest 10.3pmol/L PTH. Sneaky I know, but without an official diagnosis I need all the bad blood results I can get.

I do have the one with added calcium though. My reasoning is thus. My calcium levels are safely within range so my risk of hypercalcemia is lower. And I'm worried that if my diet is too low in calcium, my body will start taking it from my bones. I do struggle to get the daily recommended amount of calcium. Additionally, i don't think the kind of calcium they add is particularly absorbable. I might be totally wrong but I definitely do feel a lot better when I don't have dairy milk and cheese.

BTW I have the most amazing cookbook called 'Calci-yum!' Cheesy title but it contains meat and dairy-free recipes that help vegans maintain their calcium intake. Obviously no good for the hypercalcemic members of the forum but I've learn a lot about the calcium content of different foods from it.

Wishing everyone a good nights sleep and better day tomorrow,

Love
Dee
xxx

Silly me - I mis-typed the PTH level in my post above:

Should be:

PTH 7.91 in a range of 1.60 - 6.90 which is why it was flagged up by the lab (not 1.60 - 8.90 as I had typed).

Brigitte - I do hope there's still time to get yourself on that study - can't you call/see your GP to contact your surgeon and explain this? When things get crucial like that, I threaten "If I don't get ....... I shall be very upset" and it sometimes does the trick, especially if you look them in the eye when you say it, darkly.

Or you could by-pass your GP and call and explain it to your surgeon's secretary - they can be quite effective if you get a good one. You may have to use the forehead sticker "I need to be on this study as I'm really ill with this now" ... Good luck!

Thanks for the calcium details, Dee, very interesting. Yes, I feel a lot better not having cow's milk. I drank a lot of it as a child as I didn't drink tea, so I had my eye on milk alkali syndrome as a reason for my high calcium until the pHPT adenoma showed up on US. Nice sneaky tactics re your calcium levels! The diagnosis game is a very hard one to play. Can you not wangle an US yourself somehow? One might show up for you too.

I know US are not supposed to be used for diagnosis, but perhaps they might have to be if GP/endos/etc are not up to diagnosing HPT from blood results. It was the swelling on the side of my face that got me the US at last as the GP noticed all the talk about HPT in my notes (the talk that said there is no way you can have this disease!) and included the neck area in the US of the swelling. I wanted to write here, why not invent a pain in the side(s) of your neck and insist on an ultrasound to rule out any problems, but I thought I shouldn't do that (!!)

Love from Tigerlily xxxx        

Ha Tigerlily, invention? It seems that some GPs/Endos think their patients are inventing symptoms which is why it takes such a long time to get diagnosed! 

I did talk to my GP about the Study when I saw him on Thursday and I was very upset that I wasn't currently eligible. He was more concerned about my worsening HPT symptoms, so as long as the end justifies the means, it won't matter. I'm keeping in touch with the Doctor in charge of the Study in Cardiff as well, so if nothing comes of the GPs letter, I have given him my permission to contact the GP. I have tried ringing the Surgeon's secretary, who seems to be absolutely useless and will only tell me that I have been referred and everything is "in hand". Everything will be in hand when said surgeon has chopped out my adenoma and it's in his hand, as far as I'm concerned! 

Happy Sunday, the sun has come out here, hooray    

Love, hugs and         
Brigitte xxx

Glad you're on the case, Brigitte - and that secretary will be "in hand" too when yours clips her round the ear for being unhelpful! (God, what an old-fashioned phrase - clips her round the ear - does anyone know what I'm talking about these days, I wonder?!).

Good that your GP is concerned about your worsening symptoms - that's an achievement in itself, as at least he is on side about HPT.

Still wet here but brightening up - going to sooth myself with some sewing today - sewing soothes the soul!

Love, hugs and cats back to you        from Tigerlily xxxx

Hahaha 
I have visions of Brigitte's surgeon with adenoma in his hand and his Secretary with a big red ear.
A xxxx

Brigitte, I hope there's a cancellation and they get you in there sharpish. Waiting lists are no fun.

Tigerlliy, thanks for clarifying your PTH result, I did think that if it had been within range they'd have declared you miraclously cured and discharged you as fast as they could, before you had a chance to argue. Hmm, I've got very cynical about the medical profession, haven't I?

We do actually have a portable Ultrasound at work, but unfortunately lack the necessary expertise to intepret the images. We're not supposed to use it for medical purposes and definitely don't ever examine pregnant colleagues at office parties. *cough cough*

It has occured to me that maybe it'll be quicker in the long run to go and become a radiologist than to get a diagnosis. Plus, once qualified I can come round and give everyone else an ultrasound too. 

Totally on board with the sewing!!! I love it too and I'm off to spend some quality time with my overlocker.

Love
Dee
xxx

Nice one, Amanda!

Portable US, eh, Dee?   What a fantastic opportunity!  Nation-wide PTH parties here we come!!

Love from Tigerlily xxxx

I know I'm terribly slow in the brain department at present, but what's the Secretary doing in the operating room Amanda??! I suppose I wouldn't care who was there, because I'd be out of it. Unless we're back to the film thing, in which case I hope I look glamorous  Now I'm getting the threads muddled up. I'm off to find some sewing to do... 

Love Brigitte xxxx

Threads ...... sewing ....... Very good, Brigitte!!

Have a good rest-of-weekend - Love from Tigerlily xxxx

LOVE the humor on here!   

Audrey