lab results and symptoms

Okay her is my firsr proper post, forgive me if it's a little long and a over the place..this resembles my cognitive activity at the moment! 

So here I am and thanks to everyone who has made me feel welcome. It's much appreciated.  To start my story off I think I have been suffering with hyperparathyroidism for whay may have been a while, I also have an underactive thyroid which I am on thyroxine for but i think this is the least of my worries.  I am 24 and have only this year had my case investigated afyer years of beta blockers and anti depressants. .... seems common for gps to wacky people on these.  For as long as I can remeber I have suffered with the weakness, aches pains, jelly limbs, lethargy,  lack of social life, not wanting to go out, irritability, total fatigue, mood swings.  This year things became a lot worse, my symptoms became more severe and bizzare. I stated making frequent trips to the loo day and night and developed a dry mouth and a feeling of being de hydratedcconstantly. I had throbbing headaches that seemed in time with my heart beat. My palpitations became more frequent and my heart raced. I noticed my hair thinning on the top and my skin is dry and flaky but I have horrific spots. My eyes feel constantly dry and I have trouble sleeping. Also i have crippling jaw pains and cannot concentrate to read or watch a film and i am in a constant day dream world. Not sure if anyone else experience clicking joints ect..... mine do all the time  my relrelationships and work life has suffered and it's got to the point now tthat I only work 3 days a week just to pay my bills as I cannot manage aymore.  

I am waiting to see a surgeon and hope I can find some relief from this. Sometimes I doubt myself maybe because some. Doctors are dismissive of calcium and pth levels.

here are a few of my calcium levels and other test results:

Calcium 2.69 2.70 2.74 2.71
pth: 2.2 4.8
Phosphate abnormal 0.7 
calcium creatinne 0.59
low vit d
abnormally high urea every time 

sometimes i think this disease has sent me nuts as i get very anxious along with everything else.
I feel for everyone out there struggling with this disease 

Lots of love Rachel xxx

Sorry about the typing mistakes! I'm using my tiny screen on my phone xx

Hi Rachel,

Thanks so much for sharing your experience, as I'm sure many of us relate to it. I'm not surprised you'd had difficulty getting a diagnosis at your age. I'm mid thirties and when I raised the possibility with the doctor they just said 'Well that's highly unlikely'. Well yes, if you took 100 people my age and lined them up, the possibility they have pHPT is highly unlikely. However, if you lined up 100 people my age with the same symptoms and bloods then it stops being highly unlikely and starts being absolutely likely. How hard is it to work out?

I too only work PT and feel fortunate I can pay the bills on that income cos I just couldn't cope doing anymore. I also feel fortunate having a great boss who doesn't penalise me for not being on the ball. Since all this started I feel like my life has contracted as I stopped doing anything more than just getting by. I avoid the word depression because I don't like it when the doctors try and pin on the other symptoms on that when actually depression is a secondary symptom of this horrible disease and quite frankly when you're exhausted, angry, with terrible hair and skin I'd challenge anyone not to feel sad?

Yes, all my joints click, and yes I live in a bubble where time just passes me by whilst I just focus on surviving.

Don't doubt yourself. You know your body better than anyone else and you know this isn't normal. The good news is this can be fixed and whilst all of us here have struggled to get recognition and treatment, it can and will happen...don't beat yourself up for the bad days, focus on the better ones to come. We're all with you in this.

Lots of love
Dee

Oh Dee this brought tears to my eyes! Thanks for your reply. It's so nice to speak to people who understand. If I look back I think I may have had this disease maybe as fat back as my teens.... I've always struggled but pushed on through until this year when I started to fall apart. I feel my life is on hold as I can only do the bare minimum. Like you said just enough to get bye. The way you described it i can relate too 100 percent some days i sit and stare into space, I feel so abnormal and find myself looking at others thinking how I would give anything for one symptoms free day.

For the time being I live each day as it comes some days arnt so bad but others are terrible. I am very anxious to meet the surgeon I feel like he holds the key to the rest of my life I'm dreading whay he will say and that he won't operate and I will be stuck feeling like this for ever.

My pth has never been really high but everything else has suggested phpt. My endo was quick to suggest an over active parathyroid and she has been so helpful it was my journey getting to her thay has been a struggle.
I'm off on Wednesday for my usual blood tests calcium and pth. I wish my pth would just be abnormal! But hey.... I've come this far I have my scans in a few weeks and also praying that picks. Something up.

I'm also waiting for my bone density results maybe next week.... I'm a little worried because of all the aches and clicks and cracks....

What a nightmare things seem to have deteriorated rapidly this year for me and I'm hoping for a light at the end of the tunnel.

I would love to hear your story and journey too Dee

Hi Rachel

Welcome to the Forum. This has been a saviour for me on here, lovely people with excellent PTH knowledge!

I too am on a journey of being undiagnosed. I'm in the process of battling with my GP's over how often I should be tested. At the moment, they do not want to retest my Calcium & PTH until Jan 2015! Ridiculous!

I am 31 and have been fighting this battle for 18 months, Depression, CFS, Anxiety, you name it, apparently I've got it. I've seen 2 Endocrinologists, they both agree I have elevated Calcium then run a whole new bunch of labs then decide "actually you don't have HPTH, have a nice life"   When in fact I'd love to put them in my body for a day. 

This Forum is amazing for support, knowledge and also just a great set of ears when you're feeling low. Keep positive, I know it's hard but everyone is here to support and knows how ill this Disease makes us feel.

I am battling headaches this weekend and some majorly tight shoulder muscles, oh and don't mention the dry, lifeless bad hair that makes me look like a scarecrow, not even Aussie Repair can save it at the moment  

Post anytime and as Dee rightly said, we know out bodies better than anybody. Keep up the fight 

Lucie xx

Hi Lucia,  I am so sorry to hear your battle with your gps and endos. ..... what are they waiting for! What's stopping them?  It's so upsetting! 
What are your lab results ? I'm guessing you may be having a battle with ffh ? I had that too but it was ruled out quickly when my parents kindly supplied their calcium levels. 

I don't understand how specialists expect us to carry on living like this  
I jhave had a bad weekend too my jaw is aching so badly and I'm aching all over. IIt's a sorrt existance big hugs to you.... as for the hair I'm hairdresser  and i have the worsr hair!! Quite ironic really! Got to laugh or i will cry.... well i do that alot anyway

lots of love xxx

Good Afternoon James,

I have been liaising with Fausto Palazzo via email and he has recommended I contact you.
Rachel, 


It all started with me feeling run down, very fatigued, palpitations and a general feeling of being unwell, but if someone asked me what was wrong, I couldn't quite put my finger on it, I just felt very sluggish. Palpitations for me have been something I've suffered with for about 6 years. I continued to feel this way, I developed headaches, brain fog, leg cramps, bone pain and just a feeling of being so tired, I felt nauseous and exhausted with it. I tried to come to a conclusion why I suddenly felt this way, maybe just life being a busy Mum of two toddlers and possibly over doing it on the exercise. I slowed down on exercise and I got myself to bed early as much as I possibly could. I know Motherhood is tiring, but this was a different kind of tiredness. Nothing helped, daytime naps, early nights, Vitamins, those things were not giving me my energy back. I felt like I had gone to bed a healthy, fit 29 year old and I had woken up in the body of an 80 year old, and this is how I feel everyday.
I went back and fourth to my GP, I was put on Antibiotics, Amitriptyline for nerve pain and told that I was suffering from Anxiety. 

I noticed my Calcium was elevated in Nov 2013 whilst I was living in Sydney, so I went to my GP and requested a PTH blood test as I had researched elevated Calcium. Looking back at previous blood tests, my Calcium was also elevated in Aug 2013. I researched more into this and was very surprised how much of HPTH symptoms I could relate too. Thinning hair around hairline and scalp, headaches, loss of energy, feeling unwell, palpitations, nerve pain, bone pain in fingers and my hip, heartburn. If I was asked to fill in a HPTH questionnaire, I could tick every box. 

Whilst I was in Sydney, I had an Appendectomy as I was experiencing stomach pain, my Appendix turned out to be normal but I had to have Magnesium and Potassium through a drip as my levels were low. 

I felt like I had exhausted every avenue with my GP's, they have mentioned CFS, Depression, M.E & Anxiety. I begged for a referral to see an Endocrinologist, which I did, he asked me why I had come to see him as there was nothing wrong with me, I left in tears and told to expect an appointment for a Short Synacten Test. I'd had enough and come May 2014 I went privately. He didn't rule out HPTH from blood work taken in January and was on board with me that if my Calcium was elevated/high, my PTH should be low. He has closed the doors on me  since then and deemed me as "healthy".

August 2013:
Calcium: 2.58 (Range [url=x-apple-data-detectors://0]2.10-2.55[/url])
No PTH

November 2013:
Calcium: 2.66 (Range [url=x-apple-data-detectors://1]2.10-2.55[/url])
No PTH 

December 2013:
Calcium: 2.56 (Range [url=x-apple-data-detectors://2]2.10-2.55[/url])
PTH: 32.2 (Range 15.0-68.0)

January 2014:
Calcium: [url=x-apple-data-detectors://3]2:49[/url] (Range [url=x-apple-data-detectors://4]2.10-2.55[/url])
PTH: 61.7 (Range 15-68)
Vitamin D: 140 (Range 50-130)

May 2014:
Calcium: 2.51 (Range 2.20-2.60)
CA corrected: 2.45 (Range 2.20-2.60)
PTH: 3.5 (Range 1.6-6.9)
Vitamin D: 108

Urine Calcium Volume: 2.282 Litres
Urine Calcium: 3.28
Calcium/24hrs: 7.48 ([url=x-apple-data-detectors://6]2.50-7.50[/url])

Urine Volume: 1.666 Litres
Urine Creatinine: 5.6 (Range 8.0-12.5)
Creatinine/24hrs: 9.3

August 2014:
Calcium: 2.33 (Range 2.20-2.60)
CA Corrected: 2.21 (Range 2.20-2.60)
PTH: 4.8 (Range 1.1-6.9)
Magnesium: 0.75 (Range 0.7-1.0)

I understand that these levels do not scream HPTH but I've been in contact with 2 Endo Surgeons and agreed that at the moment, Hyperparathyroidism is unproved rather absent. They've advised me to have my Calcium, HPTH & Vitamin D monitored but I cannot get my GP on board, regardless of the countless trips I make trying to get them to take my symptoms and abnormal results on board, they will not send me for anymore blood tests again until 2015. 

My levels are never consistent. The symptom list for me is endless and I'm tired of feeling like this, I feel like something is sucking the life out of me on a daily basis. 

Sorry for the long email everyone xx

Apologies for the typos in this! Dam iphone!

Me too many appologies for the typos!
I'm so sorry to hear your going though this! What a battle it's so frustrating!
I do believe the reference ranges should be altered as in the us they are slightly lower forgive me if I'm wrong but up to 2.2 ? I think the human body has a very fine balance of where it is happy with its calcium levels and that we are all different. So some can sit and feel perfectly fine at a little higher level where as others feel terrible.
I think eveyone should be investigated as an individual.

As for your symptoms I feel for you so much! It's a horrible way to live i too tried to put the tiredness aside and crack on but other things started to happen. I also haven't had a period in over a year I feel like my body is shutting down... sorry if thays too much information!

Xxx

I agree Rachel, we are all different and I think this disease affects everyone differently and certainly people on here have proven that no levels are the same/elevated/high and still had PTH Adenomas removed. Just need to be lucky and find someone who see's through it all. With regards to ladies business, I'm very irregular.

We keep plodding on and do well at it I think 

Lucie xx

Totally agree ! I feel very fortunate to live where I do. I am in bristol and am seeing an endo at southmead she is a lovely kind understanding lady. And she has worked quickly for me I owe her a great deal of thanks. As for the surgeon I am seeing Nelly is under his care too. It's such a shame that our locations matter and can decide our health treatment. Shame you don't live down here ! xxx

Hi Rachel and Lucie,

I feel like I made a bit of a break-through recently regarding the lady business. Before I had made the link with HPT, some of my symptoms definitely suggested hormonal problems. I had noticed my hip pain had a monthly pattern to it. Having tracked symptoms for a couple of years now. I think I have some answers.

Calcium and PTH are heavily linked to estrogen. High estrogen is associated with better bone density, high PTH lowers estrogen. Also I believe (though I need to go away and check this) I read somewhere that estrogen is necessary to convert vit D from it's active form. 

So what I think is happening in my body is this. If I give it vitamin D through sunshine, cod liver oil tablets, vit d tablets etc it's response is to use up my estrogen stores trying to get rid of it. It doesn't want my Ca to rise. I then suffer low estrogen symptoms the following months - fatigue, mood swings, unbelieveable tearfulness, intermenstrual spotting, horrendous hormonal acne. 

To test out my theory I asked the doctor to check my estrogen levels a few weeks ago. They were right at the bottom of the range.

I had thought many of my symptoms were due to low vit D. (The symptoms overlap) but ironically I think it was actually too much vit D in the summer crashing my estrogen.

This confuses the heck out of doctors. They immediately assume estrogen problems mean somethings wrong with my ovaries, but I have no issues there. I'm sure a lot of others have just been dismissed as perimenopausal or anxious.

How does that tally with other people's experience? I'd love someone to actually do some research on this. Perhaps Dr Norman could analyse his patients to see if low estrogen is more common in pHPT ladies.

Love
Dee

Dee !!! Thankyou so much for this it's facintating. Your right!!! My oestrogen levels also are low ! This explains alot I think this is very valuable and I should inform my endo! Xxx

Don't let the endo try and make the low estrogen the primary problem. It's a secondary symptom of having high calcium.

The underlying problem is still messed up parathyroids and the only way to properly sort your estrogen issues is to fix that first. i would be a little worried that taking synthetic estrogen might raise your calcium further which you definitely don't want. 

I am only spectulating though, until I persuade someone to do some widespread medical trials I can't be sure. 

Love
Dee

xxx

This is so interesting. ... I'm begging to put the puzzle pieces together. It's all begging to make sense! This is what I'm worried about in taking thyroxine I don't what then to think that my thyroid is to blame for this... i know it's causing issues but not all of them. I am aware hypothyroidism caused abrormal menstrual cycles... irregual or to heavy but mine have stopped completely provably about a year ago.... i am in no doubt it's all linked to parathyroid problems xxxx

Welcome Rachel to the forum. 

Interesting thoughts Dee I am not sure what my estrogen levels are but my symptoms are very similar.  Its definitely worth looking into. 

Mel x

Dee.... i just checked me oestrogen levels. I haven't really looked properly. But I'm horrified to find they are the same if not lower than a man's! This explains alot ! Xx

Mel thankyou for your welcome. This seems an in testing topic the link between oestrogen and parathyroid problems! The more i think the more I makes sense and that it seems a lot of us suffrage with irregular or lack of a cycle ! Xxx

Very interesting! I've been irregular since I can remember! Could explain a lot!

I am 38 years old. Had my parathyroidectomy 10 months ago. I just recently diagnosed with premature menopause.