First of all thank you for all your messages, I’m touched by how many people take the time to get in contact. This is a lonely illness to have as you know nobody else who has it, no notes to compare or others experience to draw from. It is an illness that is hard to explain to others, an illness that does odd things to your body and makes you feel so unlike yourself that it is a relief when you make contact with other people in the same boat.
So here I am a month away from the op and it is slowly becoming a reality. Plans are being put in place to have the kids looked after for a while, lifts to London are booked and I’ve made sure the cats will be fed while I’m away!
I’ve been trying to put all this to the back of my mind and keep busy as dwelling on all the ifs and buts does no good to anyone and waiting is difficult enough. As the date draws closer my mind is on it more and I’ve slipped back to typing out the word parathyroid into my laptop and reading it all again. Sometimes that is satisfying as I look down the symptom lists and tick them all off (I’m not mad then, these weird symptoms are all down to this condition) or read happy messages from people cured who rave about the amazing trip back to their old self. Sometimes it makes me angry as I start to ponder how long I have felt so unwell and how illness has stripped so much from my life.
But for the first time it is making me feel a bit scared, I read of how awful some people have felt after the operation as their body struggles to get the hormones and calcium back on track again. I’m scared of waking up from the operation to be told they couldn’t find the rotten parathyroid and so I still have months ahead of me of fighting to be cured.
I’m scared that the real me has been buried under this illness for so long that I won’t recognise myself when cured. How much of this more forthright and out spoken person has come from the battle of facing a difficult illness and stupid doctors and how much is this the just the illness itself which is notorious for making people cranky? Am I really rather lazy and lacking in drive in life or is that just the creeping on off this illness over the years that as sapped the spark out of me – or was there never that go getting gene in me anyway? I haven’t had the urge to go out partying so much over the last ten years and am a real homebody, happy to potter around and spend time with close friends – I had assumed I was just settling down into approaching middle age. Is that just my make up or has the illness shaped how I have behaved over the last few years? If I were to get better would I suddenly feel like living a wilder life or will I continue to enjoy my quiet one?
I have been unwell for so long that I have lost sight of where the illness stops and where I begin. Maybe that shouldn’t be something to be scared of, maybe that should be just interesting to see what happens. Yet right now everything feels so uncertain that it all seems so unsettling and I fear this month is going to feel like a very long four weeks.
Hi,
I’m so glad I found your blog!
I am marking on the long road of diagnosis of Primary Hyperparathyroidism by my over cautious endocrinologist.
In brief for the past 10 years I have felt generally unwell, older than my years – currently 41. The unwell feeling, low mood, aches and pains always got worse in winter getting much better in late spring summer. I know think this was low vitamin D due to lack of sun – primary hyperparathyroid people tend to have low vitamin d levels and feel worse when levels are lowest.
In 2005 I was diagnosed with Ulcerative colitis a chronic inflammation of the bowels which can also cause secondary arthritis in the joints.
I moved about three years ago and so moved hospitals – the new gastroenterologist gave me a full medical and blood tests – I complained about weakness in my thighs – not being able to get up out of the chair – not symptoms of arthritis or my gastro problem! He discovered my Vitamin D was 5 – well below normal! Nobody ever told me how to get it back up to I used mega doses of Vitamin D supplements. He also sent me for a bone density scan (DEXA) – which revealed osteopenia, the first step to osteoporosis. This was put down to my low dairy intake as dairy upsets my guts.
During a routine blood test from my rheumatologist sent me a letter saying they had found a high blood calcium but it was nothing to worry about in itself.
Rheumatologist referred me to an endocrinologist (who as most endocrinologists do – specialises in diabetes – ‘sighs’).
Trying to cut a long story short – endocrinologist tested 24hr urine, blood calcium and PTH. I didn’t have loads of calcium pouring out of my kidneys so he thought I had Familial Hypercalcemia Hyocalciuremia. Which is even rarer than Primary parathyroid!! As I was ‘asymptomatic’ (laughs) he discharged me!! At that time I was sick of consultants and was glad to be rid of him.
Five months ago I saw my GP because I felt so ill and we discussed possible causes. The problem is when you have other diseases – everything gets put I that pigeon hole. Oh its the colitis, oh its the arthritis. Then I thought back to the high blood calcium and the Hyperparathyroidism 2 years ago.
I looked at the symptoms and everything fell into place – I have Primary Hyperparathyroidism.
I asked (told lol – he’s very understanding) my GP to refer me back to the endocrinologist.
So here I am 2 months after seeing the endocrinologist again!! Waiting for the results of a genetic test 2 months and waiting – how long does a genetic test take?? The genetic test I’m sure will show I DONT have FHH. My endocrinologist will then have no refuge (I hope) and have to send me to a surgeon (of my choosing – thinking of John Radcliffe, Oxford or Stoke Mandeville Hospital
Aylesbury which both specialise in minimally invasive parathyroidectomy).
I want my mind back, I want my body back, free of pain, spasm and weak muscles, I want my happy go lucky nature back and not the snappy, dark, moody person I have become. In short – I want my life back!
To relate my mood – I think of my attitude as a driver. In 10 years of driving I have used my car horn just once in anger! I now use it on a daily basis!!!!
I think I might start my own blog – I’m sure my partner must be sick of me moaning on all the time.
Thanks for your blog and I hope your surgery goes well with a full recovery!
Simon
Hi Simon – glad you got in touch, I can recommend doing a blog as great therapy and a place to let off steam on the bad days!
Now let me first state that I am not a medical expert by any means and this is only my opinion but it seems very likely you do have Primary Hyperparathyroidism.
I was given the run around about it possibly being FHH (which is so very rare and just not likely as you do have symptoms) I wasted several months while they faffed around with that one.
Do you have your blood test figures, what the calcium and PTH actually were? If they show raised calcium and a ‘normal’ or high PTH then you need to stamp your feet and get these people to get off their backside and treat you right now.
They should be operating as you have evidence of bone damage and you are under 50 – both criteria stated as reasons to take action and not ‘wait to see what happens’. I get terrible bone and joint pain and I am told it is all down to this illness – there was a man on a discussion board in America who was down to have knee replacements for his ‘arthritis’ and after the parathyroid surgery his knees were just fine and didn’t need any treatment after all…
You have been treated badly by your doctors, it shouldn’t be up to us to diagnose ourselves – how ridiculous is that? I can’t say for sure that you have a parathyroid problem but all the signs are there and you should have had extensive investigations by an endo. Why on earth was such a low vit D not treated by them? Mine was found to be in single figures (endo gave me mega doses that made my calcium go up so I will not take any more) which is very common if you have Primary Hyperparathyroidism.
Please try and find a good surgeon who knows what they are doing and has plenty of experience. I have researched and researched and it seems to all come down to how many of these operations a surgeon does a year – he needs to do lots, not just a couple here and there. I am not getting a minimally invasive op as they can’t find the bad gland on my scans – I’m not bothered in the slightest it will be more extensive surgery as I have found the most experienced surgeon I could and that is what really, really matters.
If I had known how long this was going to be I would have paid the £7000 quoted to me for a private op over a year ago – this year has been hell and I continue to feel worse and worse. I hear you loud and clear when you say you want the laid back old you back – I’ve disappeared too!
I’ve had to fight like mad to get to this stage – get fighting too now Simon!
Please keep in touch, let us know how things are going – wishing you lots of luck and answers soon xx
Was thinking of you today so dropped in to say Hi.
Wanted to encourage you – I had many of your concerns – maybe I was just lazy, maybe I wouldn’t even like the post-surgery me!
Spending 2 weeks on hols in France and compared to last summer have so much more energy and enthusiasm. As we plan our days my old symptoms and how I would manage are not top of our priorities
Have been known to have the odd doze and overdid the shopping a bit yesterday so felt it in my legs today, but really – unrecognisable !
Hang on, you’ll get there.
Jx
Hi,
I do have some results somewhere… did I mention forgetfulness lol.
Honestly It was getting dangerous with my meds painkillers and stuff for the arthritis. I would take them and within seconds forget if I had. So I now use a pill box and an app for my mobile to remind me and log them as I take them. I used to have such a good memory too.
Yeah the vitamin d – gastroenterologist said almost as low as it can go but never gave me anything for it. Luckily I used to be a technical manager for a Health food supplement company so I knew what to do.
I asked the endo how much vitamin D do I need to get from 5 (very low) to 50 (optimum) in my blood test? He said that’s a very good question laughed and left it at that!!
Luckily I’ve got a science background and worked it out myself lol I’m now about 50-60 and take a single capsule of 50,000 iu every month or so.
My problem is my calcium usually comes out high normal or just over normal and my PTH is about 79 (65 upper end of normal). My normal calcium in 24hr urine didn’t make endo feel confident in diagnosing Primary Hyper’
I’ve also had the dreaded…’but we would expect to see your blood calcium trend upwards’. from the endo. No! No! NO!
10 minutes on the internet will tell you calcium doesn’t trend up it goes up, normal,low, up, normal. These doctors are working from knowledge acquired 20-30 years ago.
I’m thinking of getting a copy of my medical records – not going to cost me more than £50 well worth it so I can run rings sound the consultants!
Better get off got a lasagne in the oven – felt well enough to cook today. A rare day.
Thanks for replying so quicky.
All the best.
Simon
Hi babe….. head in muddle again here??/ not sure why though !
You will get through this poppet and it will be soon, I can’t wait to get the WOW!!!!! email xxxxxx
Your boys will so admire you for all you have been through xxxxHere whenever as usual xxxx God bless
Hey Foggyhead, its KAB (not sure if I’m logged in cos I’m at work). Not long now. I keep thinking of you. Can I ask , did you work before you became ill? I’m asking because I just don’t seem to beable to function today. As I am on light duties (my job can be quite alot of manual handling duties) I spend about 70% of my time at my desk doing database work.
I have found the bones in my feet hurt alot when I walk over the past month. I’m falling to sleep at my desk (the air con is on max and I’m normally in a fleece so its not because its humid and warm), I feel like I’m abut to get flu all the time and I hurt everywhere. My brain does not work and I just don’t know how I’m functioning right now. My GP has no sympathy at all and just tells me I’m bound to feel like that. Help. xx
Hi KAB. I am a self employed illustrator and my work has been badly affected and at times just impossible, a financial disaster.
I can so identify with what you describe here. Feet hurting, falling asleep, the feeling of flu coming, body hurting everywhere – yep that’s me too honey, how crap is all this?
The head not functioning is the worst for me, I can take feeling unwell and pain but an illness that affects how I think, takes away my memory and leaves me unable to function mentally has been a terrible experience. I am going through a bad couple of days, I know it comes in waves and things will get a bit better again soon but sometimes the world just doesn’t seem to understand one little bit and we are expected to just carry on.
When I have tried to explain it to other people, and doctors in particular, I must be doing a terrible job as they can not grasp how difficult some days are.
You poor thing. At least working at home for myself I can pace myself during the week, I can doze for a while and just work in the evening to catch up hours. I would not have been able to hold down a ‘normal’ job by now. Sorry, brain fog here – at what stage are you with treatment/diagnosis?
If I was there with you I would give you a great big hug, so sending you a virtual one with so, so much empathy. Hold on, we will get better and this will all sem like a bad dream one day xxxxxxxxx
Claire
As I recall, the thoughts and feelings you describe are similar to the way I felt just a month before my op (unbelievably a year ago now)The anticipation is difficult to handle, but I wouldn’t waste any time worrying whether you will ‘like the new you’.
You will still be YOU – only better! The essence of you shines through your whole journey. This experience will have made you a fragile version of your true self for so long now, that you may feel aspects of you have been lost for ever. I’m sure this disease leaves its marks in different ways – but you are young enough to make a full recovery.
This is what you’ve battled for Claire for so long – & you may not quite believe that what you’ve wanted is about to happen. Expect some hiccups along the way (you may be lucky & have none) but the outcome is sure to be better than the nightmare you’ve been enduring.
A year on & I still have IBS, migraines & my original lifelong Coeliac disease. The PTH disease has left some occasional residual pain, but I do feel much better than I did. I’m going through the menopause , so that messes with me too – but I feel a whole lot better just knowing that the adenoma is out, and no longer able to damage my system any further. My blood levels are being monitored every 4 mths for a while& are (so far) back to normal, so I continue to be optimistic.
I can’t wait to hear all about your recovery. .. not long now XXX
(If its any consolation to you & KAB , I have felt drained with headaches the last couple of days as I’ve always been inclined to feel when the weather here turns hot & humid. I know you’re in air con KAB, but I’m not sure if positive ions can still get in? I’m sure this can exacerbate PTH symptoms.)
- and Simon
Keep on pushing until you get a proper diagnosis & treatment ASAP. If it hadn’t been for my IBS I would not have had the tests that revealed my high calcium, PTH & osteopenia. My gastroenterologist said this indicated hyperparathyroidism & I took it from there to a surgeon at Stoke Mandeville, where treatment followed fairly promptly by UK standards.
We have all learned that you have to be assertive about treatment, until , as you say, the UK system catches up with current knowledge on this disease.
Believe in yourself and fight for the treatment you deserve.
PS. Simon
My Calcium was only around 2.7 & PTH 7.7, but I had a sizable adenoma removed. Mine was pressing on my spine so could have gone on to cause untold damage in not removed.
I would advise you NOT to take Vit D supplements until AFTER your op. If you read the relevant section on http://www.parathyroid.com you will see that low VitD is the body’s way of trying to protect you from the excess parathyroid hormone. Taking vitD often makes HPTH patients feel worse.
Once the adenoma is removed it is good to take it to get your levels back up – as it helps the body to reabsorb lost calcium back into the bones.
Hey Foggyhead, KAB again.I managed to struggle in to work today. Its a good job my hubby works at the same place. Still having a bad day but last week was good so I should just try and take the rough with the smooth although I feel very nauseaous at the moment.
I will be having my MIBI scan on the 15th Aug and then I have another one on the 18th Aug. I’m not sure why I’m having 2. The nuclear medicine department said it was a different protein or radioactive source (I can’t remember, you know what its like) and then I have to wait for an appointment to see the consultant again and then see if my work’s private health care will pay for the op (they wouldn’t pay for the scan). Yesterday I just felt like there was going to be no end to it all. It doesn’t help that my husband thinks I’m being lazy if I don’t feel like going to the gym or swimming or an 11mile bike ride. He , obviously, is a bit sporty. I am attnding weight watchers meetings cos I’m trying not to put too much weight on and then feel guilty that I haven’t been to the gym that week and have therefore not lost any weight cos I’ve been at the biscuit tin again due to being fed up with everything.It all gets a bit too much.
Have you been for a DEXA scan? I didn’t know if it was worth hasseling my GP to see if they would refer me.I’d like to take some time off but don’t know if my Dr would sign me off (doubtful) and I just feel like I shouldn’t have time off because I do have good and bad days. I don’t know what to do really.
Thanks for the hug, by the way. It was needed and felt nice coming from someone who actually understands.
Hi Ashleigh, you may be right about the weather, it was very humid yesterday. However, I was up at 545am takeing 2 paracetamol and a 400mg Ibuprofen. It seems to have eased it today.
Does/did anyone burp alot. I don’t just mean little lady like burps. I mean real , loud , from the pit of your stomach burps? I ahven’t had heartburn or a large amount of indigestion but my hubby can’t believe the kind of burping i’ve been doing over the past few months!!
Hey KAB, how did the scan go today? Seems odd having two – hope you get results quick as waiting is a nightmare! I did have a DEXA scan, one endo at Hammersmith said there was no need then next one I saw ordered one straight away – typical. It showed not too much damage for me but I was on my way as results were poor for my age -0.8 if that means anything to anyone…I think -1 is the marker for recognised bone damage.
Sorry you are having such a rough time, it’s hard to keep on at the doctors when you feel like this but don’t let them rest, keep pushing and pushing to get them to speed things along. Come on here and vent or have a chat anytime
I don’t burp a lot but I have bad acid reflux which is a common symptom so this might all be related – oh what wonderful symptoms we are all enjoying, eh?! xx
Hey Foggyhead,
Todays scan went fine. They said the second one is to just get a scan of the thyroid so they can compare it with the scan they took today! Thye must know what they are doing. I went to see my GP an he said I might also be depressed. Admittedly I have had alot going off this year (misscarriage and my mum being diagnosed with breast cancer so trying to keep the family together as well as trying to grieve and then getting my diagnosis). I can’t concentrate at work and am making really silly mistakes. My mind just goes blank and I feel so frustrated and a failure.
I’m supposed to keep a diary of how I’m feeling and then answer a questionairre for Friday when I go back to the GP. The problem is I answer all the questions with yes or ‘nearly everyday’ but most of this is due to my current symptoms. I’m frightend of being misdiagnosed with depression and starting medication when I don’t really need it. Looking back I may have actually been depressed for some years but was that because of undiagnosed PHPT? Can you offer any advice?
Are you nervous? I so hope everything goes well. Still thinking of you. XX
Oh you poor thing. I wish I could get you round here now for a cuppa and we could have a good long chat xx
Sorry things are so hard at the moment, you have so much on your plate. So very sorry to hear about the miscarriage, that is such a sad thing to go through – then with your mum having breast cancer, well that must feel like just far too much to deal with all at once.
These things in themselves would be enough to make anyone feel low and that can lead to depression however this illness suck the life out of you and could also be the true cause of your symptoms. You will probably never really know but you feel bad and you are left needing to decide how to deal with it.
I can only offer my experiences to see if that helps you make any sense of yours. I had postnatal depression after having both my children, not very badly but enough to feel quite awful for a while. I took anti depressants both times – first time I was terrified and was not keen at all. After a couple of months I started to feel much better and after six months I felt well enough to come off the medication. Did the anti depressants work or would I have got better anyway? No idea but it took any fear away for me for taking this kind of treatment and if I were to feel depressed again I would not hesitate to ue them again.
Not long before I was diagnosed with PHPT, my sister lost her baby at birth – I was with her on the day and it was the most awful experience and the grief I felt was long and difficult. When I went to the doctors about my symptoms I wondered if it was the grief that was causing them, if I was suffering from depression – trouble concentrating, fuzzy head, tired all the time etc. I was sure this was something different though and it turns out I was right, the grief for my sister’s baby eased slowly over time and life got back to normal for me. I could honestly say everything in my life was good but I still felt the same old symptoms (and I knew it wasn’t depression as I had experienced after having my kids, this felt different)
The symptoms of depression and stress and very, very similar to PHPT and I am sure that many people go undiagnosed because of this. My GPs would not listen to me when I protested that I was physically ill, not mentally ill this time.
I have had bad symptoms this year and feel very unwell but I do not feel depressed, I am so very lucky that everything in my life is very good and I just can’t wait to get back to it once I’m fixed. I do recognise that it affects my behaviour, I am much quicker to temper, have less patience, flap about things more so it is very similar to depression.
In the end you know how bad you feel KAB, it’s trying to guess whether to take anything for depression at this point for you. I’m sure it won’t do any harm, it may help keep you going for now if you do have some depression or it may not work at all if the symptoms are more due to the PHPT.
I’m guessing having someone to talk to at the moment and offload your troubles to would make a huge difference – if there is no friend or family you would want to then maybe finding someone professional? I know my sister got an awful lot from seeing a councellor through SANDS a charity for miscarriage and still birth. You also need to push like mad to get treated for the PHPT, stamp your feet and make a fuss or sod the money and pay for the op privately…sometimes I wish I has done that and then I wouldn’t have had this long drawn out wait. Even if there is still a depression there afterwards that can be treated then – PHPT is making you quite ill at the moment and you need fixing so you can deal with all the other stuff.
Thinking of you, keep posting honey and we’ll get through this rotten time xx
Hey,
I don’t know what I would have done without your blog. I would have gone truely mad for sure. I know alot of my symptoms are due to my PHPT but there’s an underlying sadness sometimes. My sis-in-law (who I’m very close to) has said for a while I may be depressed. She’s currently being treated for it herself. Sometimes I don’t know how I manage to get through the day and then sometimes I’m so sensative of what people say to me or don’t say and then I become paranoid that they are actually talking behind my back or have fallen out with me when this is the case at all.
I always try to think ‘there’s someone worse off than me, I’m not going to die from this’ so I try and kick myself into shape. I may give them a try. I’m lucky to have private healthcare at work so a date for my op (once I’ve seen my consultant on the nhs cos Pru Health wouldn’t pay for the mibi scan) should be soon so then I think, can I manage until then? I haven’t been diagnosed with depression yet so I may be jumping the gun.
My husband brought home a gieger counter from work yesterday. It was very funny hearing it going mad when I pointed the probe at my neck. Hubby was scared and wouldn’t even let me cuddle the cats never mind him. Who’s melodramatic now?
One day closer…..I’m very excited for you. thanks for your support. xx
Hi KAB – how did it go at the doctors today? Been thinking of you, hope things get a bit better for you soon xx
2 weeks to go foggy! I hope you’re feeling positive and not too frightened. Feel free to ask any details of my op if any queries/concerns. x x
Hi Wendy, good to hear from you – how are things going? You are so kind, I think you gave me loads of info on Facebook just after your op – can you tell me more about the camera checking vocal cords just before the op – I’m not sure I like the sound of that! xx
Foggy, I have to admit the camera wasn’t pleasant. I expected it to go in my mouth but it goes up your nose! Mr P was very quick with it tho and I was rapidly anaesthetised within seconds of it. The sensation of drifting of was almost blissful when I was at such an anxious state. All is good for me, I actually noticed today that all my anxiety issues have also vanished since the op. Along with the aching nausea and dizzy spells. I truly do feel a new woman. Am 24 weeks pregnant now.
x
Never mind about the camera, I’m sure I have had worse things done! So very pleased to hear how well things are going for you, I know you were putting off having any more kids until you got this sorted so a new baby on the way must be amazing. I am daring to now hope that I am nearly there too (having op, no more babies for me, lol) so I am excited rather than very nervous at the moment. Keep in touch and let us know how the pregnancy is going Wendy
LIkewise Claire.
Can’t believe it’s a year to the day since my op now.- and just another 2 weeks til yours.
I still have my ups & downs, but only last night a friend commented on how much better I seem from the person I was a year ago. In my case, a stone heavier (but I was a bit underweight then). I now weigh 9st 7lb, but I think that’s maybe the healthier weight I was meant to be at my age (mid 50s) – and actually, probably better for my bones!
So I’ve had to ditch my tightest jeans – a small price to pay for getting rid of the horrid tumour that was messing so badly with my body!
Oh, and funnily I came across some correspondence with my optician in 2009, when an eye test had shown some calcium deposits on my corneas. He told me not to worry too much, I subsequently found that it could be the start of a sight thtreatening condition called Band Keratopathy but had forgotten about it. (I know, weird – but that’s PTH fogginess for you!)
My vision has suffered since & I often get sore eyes, so I went for an eye test on Thursday. While my prescription has changed – the calcium deposits have completely disappeared!!
So… hope you get similar good surprises Claire! XX
Happy Anniversary! I remember so well you having it done and how concerned you were about the operation, whether you had found the right surgeon and if he was answering your questions well – can’t believe that was a year ago!
Now I am hoping I go the opposite way to you and drop a bit of weight, all this not doing much has piled on far too many pounds, lol. xx
To reassure you that your energy can return I have returned to spin classes at the gym – could not even contemplate that pre diagnosis and surgery and hadnt been to gym in over 2 years. I have gone to 4 classes in last two weeks! And survived!!!
Hugs
Way to go Janmary! Brilliant!!! Thank you so much, all these stories of feeling good the other side of the op keep us going so thanks for taking the trouble to stay in touch. I am so happy for you! xx
Nearly there Claire xxxx I swam 16 lengths last week, I am still not A1, but better than I was xxxx (And I am old) lol xxx
Have given another lass your URL, She is in Kent and struggling xxx
Almost there Ann, can you believe it?! I’m getting a bit excited and impatient now
I can’t imagine ever having the energy to go swimming, lovely to hear you are doing well and it gives me so much hope xxxx
Hope the woman you mentioned gets in touch, it’s been so good to have you lot around and it would be nice to do the same for someone else xx