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Post by Sallyb on Wed Apr 09, 2014 8:26 am

Hi - just found this forum and although it took me a while to get this far have now got here so here goes.....I was diagnosed with overactive parathyroid in Dec 2013 after 2-3 years of feeling really unwell and not knowing what was wrong with me.  Until I went onto another parathyroid site I didn't realise how bad this illness was as I have about 90% symptoms of what was written dow  n.  I couldn't believe it!  My doctor told me he would basically have laughed at me if I had gone to him with the symptoms I had and  now he told me whenever he has to do blood tests on anyone he gets the calcium checked.  I was only diagnosed by accident.  Had bad pain under right rib and was referred to hospital to have gall bladder checked, you all know the normal stuff, and they found I had hernia from acid reflux (have been take omprezol for about 3 years) this makes me wonder if thats when the parathyroid tumour began to grow????
Because they couldn't find anything I had every blood test and thats when the calcium elevated levels were found - I then had a 'jones bens' test which is urine test and this I  believe confirmed the parathyroid problem - this test also shows whether you have cancer so at the beginning I was beside myself - then doctor mentioned parathyroid which of course like many others I hadn't heard off.  Eventually a few weeks ago I had the ultra sound on neck and sebestibul scan (this didn't show anything) BUT the ultrasound did and a 10ml by 5ml lump was found.  Am waiting to see Surgeon on 6 May to discuss surgery as the consulting doctor said this is the only cure and as he back in Jan confirmed this as possible parathyroid tumour as they can't say for definate.  My son who came to hospital when I had scan said he couldn't believe someone was so happy when they found the lump.  I was so pleased because it was the proof I needed that I wasn't well as I know people tend to get fed up with you saying you dont feel well and they don't believe you!!!!

What I would like to know from all you good people out there is, could this make your chances of recovery of a major op slow up??  I had a spinal operation Jan 16th and it didn't go well in that the pain was unbelieable and my surgeon said my recovery rate was not normal (typical!!)  Just before this on NYEve I developed what I can only decribe as the worst pain in my life and was confirmed by doctor after being in A and E and having paramedics out as cluster headaches.  I am convinced the parathyroid has something to do with this !! 
Luckily once I had sumatriptan these went away after about a month.
I am still not back at work as only in last 3 weeks have the pain gone down enough on the back operation to cope with driving.  And to top it all a couple of weeks ago I had a tooth out and am still on antibiotics as I had bad infection - never had this before and wonder if parathyroid has something to do with slow recovery!!!  
I would be very interested in what anyone has to say and other peoples symptoms etc
Thanks for reading this

Sallyb

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Post by Lucycatnaps on Wed Apr 09, 2014 11:02 am

Hi Sally,
Just wanted to say hello and welcome.  Gosh you really have been through it recently, I don't envy you having surgery on your spine.  It is still early days and it does take time to heal fully, especially as we age, the muscles take a while as well.  
     I don't think menopause helps at all as it does cause many many symptoms, a lot of which doctors are just plain ignorant off.  Whatever the cause either hormone changes or PTH the symptoms are miserable,  I know that falling oestrogen levels relaxes the lower oesophageal sphincter allowing reflux to happen in the first place, I did raise the head of our bed on blocks which helped.  I suspect this is all inter related, the big swings up and down of hormones sends our bodies into complete free-fall and yet some seem to sail through with just mild symptoms.  I am so glad that you are being given the option of surgery and wish you well when you see the surgeon.  I am very new to all this as well but it sure helps me get through the day knowing there are some lovely people here who understand.
Sue in Lincs

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Re: New member

Post by Sallyb on Wed Apr 09, 2014 11:11 am

Hi Sue - thank you very much for replying - its first one I have had apart from a couple on another forum.
Yeah I agree with you age and menopause doesn't help but most of my friends are going through it and they haven't got the symptoms I have - lucky them.  One of the worse things was the headaches as I said.  I am convinced the parathyroid is the cause although surgeon says not!!!  The reason I think this is because from 15 to 35 I suffered from mild migraines!!  This was almost always day before period started.  At 36 I had hysterectomy and never had another migraine since until this awful episode new year  - what makes me think this is doesn't parathyroid produce a hormone or supposed to - if this is the case perhaps something has changed so its similar to when was younger and causing headaches - I don't know am no doctor but just putting 2 and 2 together really!!
Have you had surgery or are you going through the awful hospita systems where mostly unfortunately no one seems to know what the other person is doing!! - Feel really sorry for the secretaries and admin at the hospital I go to as they are given awful systems which don't work properly and no one ever consults them to see what they think before its brought in - its happening right now and the appointment system is up the creek (LOL) x

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Post by Lucycatnaps on Wed Apr 09, 2014 11:47 am

Hi again Sally,
I am at the beginning of my HPTH journey and still waiting to see an endocrinologist.  I have had three high calciums and one raised PTH.  I am 58 and still not through menopause, although its every 7 months now unless it finally does stop!  I have been hypothyroid since 2004 so developing HPTH does not surprise me.  I really  sympathise with the headaches, I do get them occasionally, they last three days and nothing shifts it, they start about 5 a.m. and I am pretty sure it is falling progesterone levels related or high oestrogen ratio to progesterone.  They tend to strike when I feel premenstrual.  Do you still have your ovaries??  Which part of the country are you in?  I know they changed the booking system here as well, if they say we will see you in 6 months you do not get the appointment until a fortnight before which makes planning anything really hard.  The parathyroid glands are responsible for maintaining blood calcium levels within a normal range by releasing a hormone when levels fall, if it still pumps out hormone when the calcium is high then it is usually because a benign tumour has developed and it cannot switch off, that is how I read it anyway for PHPTH.  I had a hip replacement last May and so far it has healed with no problems, I go back for my 1 yr post op appt very soon, so whether I had this starting then is another question, but it certainly healed well although my thigh can still get a bit achy where they go through the muscle.
Sue

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Re: New member

Post by Amanda Lynne on Wed Apr 09, 2014 11:54 am

Hi Sally
I had surgery 24/4/13 one gland checked one adenoma removed. However my levels are still raised and I have awful symptoms.
I have had months of headaches like a migraine every day. ATM I haven't got this, Audrey has had terrible headaches as well. I'm sure it's PTH related.
I think you have been through a lot with the spinal surgery and possibly that's why you have had problems with infection with your tooth.
I'm sure that it won't impact on the surgery for PTH. It is (if straightforward case) a relatively simple op as long as the surgeon is experienced and doesn't involve a lot of pain (correct me anyone who has had a different experience) I didn't take any pain relief, not because I'm brave but because I wasn't really in any pain. It's nothing like the pain you would have had with spinal surgery.
Yes the hospitals are very hit and miss most of us have had problems with that.
It's great that you have finally been diagnosed and if possible I would request that all 4 glands are checked during surgery as I'm not the only person on this forum to be a second time arounder ( I don't think that's a real word but I like it !)
Feel free to ask any questions we have quite a lot of knowledge between us on this forum.
Amanda xxxx

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Re: New member

Post by Sallyb on Wed Apr 09, 2014 12:06 pm

That great thanks Amanda - I definately will get them all checked I don't want to go through all this again although it seems like people are still getting symptoms even though they have had op!!  It seems so unfair that some people just get every bl....dy thing and others sail through life with nothing - but never mind could be worse I suppose and at least I can still play my beloved bowls (I do this very competatively) - although I know I lost a couple of important games last year because of my aches and feeling so unwell - I practically dragged my self onto the green but just couldn't win cause felt so unwell
I do hope you feel better and something is done to help you - thanks so much for the support - as I said before I believe its great people are out there to help and support as they have been there or going through it x

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Re: New member

Post by Little Audrey on Wed Apr 09, 2014 6:24 pm

Hi Sally, I did welcome you in another thread, but I wanted to welcome you again here.   It is always so nice to receive new members.    It is so important that information regarding this disease get out there so people can learn as much as they can about it, either for themselves or for someone else who is suffering.   

It does sound like you've had more than your share of health issues in the past.  I am so sorry to hear about it all.   It seems like everybody on the forum has had several serious health issues beside the HPT.    Sometimes life really stinks, doesn't it?    Hopefully, we're all on our way to being well again!

Amanda is right in saying that you must be sure to have all 4 glands checked during surgery.    There is no sense going through surgery more than once if you can prevent that.   Unfortunately, some people can't prevent it and will need more than 1 surgery.   I feel so badly for them all.    What a terrible disease!

Again, welcome to our forum!    I hope we can in some way help you through your HPT journey.  I know everyone on here is certainly helping me through mine!    I don't know where I would be without every one of them.

Audrey

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Re: New member

Post by Jasmine2 on Wed Apr 09, 2014 9:08 pm

Hi Sally

Finally got round to replying to your original post, sorry for the delay, had a bit of a crappy day.

Sorry to hear that you have been having SUCH a tough time of things and also have to deal with PHPT too - that's a real bummer!  Re your slow recovery from surgery, calcium is a major driver in many of the body's processes, including the central nervous system, so when you have high calcium these processes take a hit and stop working efficiently.  Neurological function slows down, bones, joints and muscles are affected, you suffer from extreme fatigue and depleted stamina, so it wouldn't surprise me a bit if it's also responsible for delaying the body's healing processes too.

I was really sorry to hear about your Cluster Headache episode, that's horrendous; this is something I know about and, like parathyroid disease, is quite rare and extremely misunderstood.  People hear the words and think oh it's just a headache - WRONG!  It's part of a group of three headache conditions known as Trigeminal Autonomic Cephalalgias which specialist neurologists have described as the worst pain known to man - it's no headache, it's severe, excruciating head pain like a continuous electric shock which leaves you unable to function.  I know all this because my husband suffers with the rarest of the three conditions - SUNCT Syndrome - which works a little differently to cluster headache but still the same incessant, excruciating pain.  So Sally if you have this as well as PHPT you are truly suffering and I really feel for you.  I'm so glad you're out of cycle now.  Did the medics tell you that cluster headache is cyclical?  Not sure from your post if you've had it before or if that was your first attack?  There is an excellent support organisation with members forum called OUCH UK.

Anyway, glad to have you with us Sally, keep us posted on how things are going for you.

Jasmine x

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Post by Kathi209 on Wed Apr 09, 2014 10:56 pm

Sally welcome 
I am so sorry to hear you are having a rough time. I'm sure most of your symptoms if not all are para related. I don't know where you live, but find the best endo surgeon you can and get it out of there.

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Re: New member

Post by Sallyb on Thu Apr 10, 2014 8:19 am

Hi Jasmine and Kathi - thanks for your welcome - I am 57 and live in Suffolk and go to Ipswich Hospital and am due to see the surgeon on 6 May - the consulting physician I see has recommended surgery as he is more worried about osterperosis that anything else ( know I have the beginnings of it and the pain in the bones is awful - of course now I know its probably the PTH am hoping that when I have op it will decrease - keeping my fingers crossed).

Jasmine - in answer to your question on the cluster headaches I have NEVER had them before and I don't want them again but I did know after checking it out that it can come back at same time and in cycles - I take my sumatriptan tablets everywhere but you can't take them until the headache is practically fully blown as you prob know.  You seem to be very up on all this - perhaps you should be a doctor you could tell them a thing or two (LOL).  I am lucky in that my doctor knows a lot about cluster headaches as his wife suffers from them!!!  He also I think has checked out parathyroid stuff because he said he now has 3 patients with this, one who has had surgery and two, including me, awaiting surgery.  He also told me that had I gone to him with my symptoms last year he would have just thought it was normal stuff and dismissed me as being hypercondriac but now he says, if he sends anyone for blood tests he makes sure he gets their calcium levels checked!! 
Going back to the headaches I am sure they may have something to do with PTH but am putting 2 and 2 together because I used to have mild migraines and they were bad enough, from 15 to 36 which was when I had a hysterectomy (after that I didn't have another attack until this horrid cluster thing) - I did have last year though quite a lot of what I call normal headaches which I thought was strange but now looking back am putting down to the PTH.
Anyway what happened to you?  Have you had surgery, awaiting surgery or what?  Am always interested in other peoples problems, symptoms etc
The problem is am putting every little ache/pain down the PTH now!!
Look forward to hearing from you both again.
xx

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Re: New member

Post by Linny on Thu Apr 10, 2014 8:19 pm

Hi Sally
I am just catching up reading all the new posts and wanted to say Hi and glad you are here with us on the forum. I had surgery in Jan and it was a long hard road to getting sorted so good to read that your doctor is switched on. I wanted to say that I had two operations in the last year and I recovered physically quite quickly but I think mentally it has been more difficult. Plenty of anxiety and worry but getting there slowly. The surgery went well and the second one only took about thirty minutes including them checking my vocal chords. My scar is looking good and symptoms are very slowly resolving. I wish you well.
Lynn  Very Happy

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Re: New member

Post by Adele2 on Sat Apr 12, 2014 5:53 am

Welcome to the forum Sally  Very Happy 

I just want to say that if you go to Dr Norman's site, it's full of valuable info on all this. 
I will say that I've had a tough time also. I catch every flu bug and icky thing that goes around=bad immune function.
I had pneumonia for 3 months and because I was put on a strong antibiotic, my GP thinks that the meds stripped my gut of the good bacteria that fights infection. As a result, I'm now getting tested for C Difficule...Ugh!
I know from my research that Vit D levels go low from the high Calcium & PTH. Vit D is so Vital for reducing pain, having a normal sleep and feeling good mentally. It also aids to speed up recovery.
After you get surgery, your calcium will normalize in about 3 months. Vit D should go back to normal also. Maybe your doc will prescribe both post op.
Big hugs to you. i hope you have many more good days than bad...and if they're bad, you have us to lean on.I dunno what I'd do without the support of all the dear caring folks here.

The more we grow in numbers, the more knowledge we share and the more anxiety we can help alleviate.  Surprised  Surprised 

PS. I get wild three day long headaches as well. I guess the docs don't know as much as we do huh? We're actually living it.
All the best in your search for THE BEST SURGEON YOU CAN FIND!
I can't stress than enough. As you know, there are too many good people here who've had to go a second time. I truly hope that yours will be a successful end to your HPT nightmare.

Adele

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