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Primary Hyperparathyoidism Sufferer - Hello!

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Primary Hyperparathyoidism Sufferer - Hello!

Post by danicayetano on Thu May 01, 2014 4:24 pm

So, sitting here I'm contemplating the next few weeks of my life and whether they will give me the relief and answers I've been looking for.

Back in February I got tired of constantly feeling like crap (for the last 4 or so years). I'm 23, I should have lots of energy right?

Actually, more accurately, I had been feeling like crap for about a year, and my partner's constant pleas to go and get checked out combined with the impact it had on my work finally got through to me. So I got a blood test - high calcium. GP requested a second one. High again. I jumped on Dr Google and ended up on Norman's website, so asked him to refer me for a test of my PTH levels. Bingo!

Some background before I get into it, if anyone is wondering about my state of health: rarely exercise but on my feet all day 40+ hours a week, smoke on and off for months at a time, issues with alcohol but not dependency as much as bingeing - cut down from drinking excessively every weekday to drinking once a month in the past 18 months, have dabbled in lots of illicit substances but not for over a year at least and never frequently. 

Symptoms and other assorted maladies I still live with, including but certainly limited to:

  • Complete and utter exhaustion, broken sleep, and general feeling of unwell-ness in the stomach and the head
  • Aches and pains for no apparent reason, including RSI-ish problems in wrists, arms, hips and ankles
  • Apparent UTI's/kidney issues with no associated pain/burning/etc
  • Crushing depression, hyperanxiety and paranoia - currently on Pristiq 100mg daily and occasional Valium 5mg, after trying Lexapro which was awful for me. It comes and goes in cycles, being with someone who suffers from these helps to recognise dangerous patterns but I still wake up feeling plastered to the ground some days
  • Digestive problems by the handful - switching between constipation and diarrhea, sensitivity to foods, gas, bloating, hemmorhoids
  • Psychotic heart rate, even when I'm relaxing but, related to the above: skyrockets in any instance of unfamiliar human interaction or stress
  • Thinning hair, constantly shedding, slight emerging bald spots, very embarassing Sad
  • Difficulty in concentrating. I know I have a sharp brain but it fails me every now and then and I feel like a doofus. I feel like I space out when people talk to me because internally my mind is going at a million miles an hour
  • Restlessness and fidgety-ness - usually I rely on valium or painkillers to knock this out when it shows up but sometimes that isn't nearly enough
  • Short-term memory loss to the point where I will say something out loud and literally seconds later blank out on what I've just said and have to ask someone to repeat it back to me Sad
  • Irritability, not too bad but if I'm tired it is ten times worse to the point where I cry from frustration when my partner makes silly adorable jokes
  • Monstrous heartburn
  • Body temperature fluctuations - hot flushes, sweats, panics or icy cold hands and feet for example
  • Headaches and migraines for no apparent reason, including visual migraines and blurred/flashing vision
  • Crappy sex drive (somewhat for Pristiq but it's still high at times, just unpredictable and inconvenient)
  • Weight loss - since returning to work dropped from 57-58kg to about 47-48. I love my body, bones or curves, and being 5'1 I've always been small but I know it scares my partner and my family.


So in amongst all this mess I took 2 months off about 9 months ago while I basically had a breakdown due to emotionally horrific working conditions, but I think at least part of it was that I'm just worn down. Despite now loving my current job and having a relatively happy home-life I spend a lot of time crying, into space feeling entirely numb to the world around me or lying in bed feeling completely defeated. I somehow maintain full-time work (barely - my condition has impacted on it and it's a real struggle every morning) and a relationship with an incredibly supportive, but also-struggling-with-depression beautiful partner who takes wonderful care of me, and my three beautiful step-kids who light up my life, as well as trying to keep up a semi-active social life to stop me from drowning in my misery, but I've really had enough. Some days I feel great - and I think I have Pristiq to thank for that - but mostly I'm just tired and fighting a sad boring battle every day.

After a sestamibi scan, ultrasound, further blood tests etc over Feb-Apr via my GP and endocrinologist - confirmed primary hyperparathyroidism incl osteopenia. I'm getting sliced up later this month. One visible adenoma about 5mm across - nothing major, but I'm really hoping it holds the answers to this mess. What worries me is that kidney problems exist on my mother's side of the family - but I didn't show anything exciting in screening for MEN1. Also the odds of it being hyperplasia at my age are higher, which scares the doody out of me. I don't want to be in and out of the public hospital system in a few months time - I dedicate myself to my work and I hate that this condition has taken me away from contributing 110% to that.

I cannot express enough sympathy and love for all of you who live with this awful condition. It makes you question whether you might be going crazy and imagining things or just thinking you need to pull yourself together, but it's painfully real.

danicayetano

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Re: Primary Hyperparathyoidism Sufferer - Hello!

Post by Admin on Thu May 01, 2014 4:42 pm

Hello Danica and welcome to the forum.

I am not able to comment about parathyroid stuff, this is Mrs Admin's (Nelly) and other members' area of experience. 

However, i noticed that a number of your symptoms are indicative of hypothyroidism, so getting your TSH, FT4 and FT3 bloods checked is something that i recommend.
There do seem to be some common symptoms with hypothyroidism and Hyperparathyroidism, so it's a good idea to cover both when you have your bloods done.
Also, make sure that you get a printout of your results and do not accept 'in-range' as an answer.

Edwin
(Mr Admin)

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Re: Primary Hyperparathyoidism Sufferer - Hello!

Post by Little Audrey on Thu May 01, 2014 5:46 pm

Hi Danica, welcome to our forum!! As we always say, so sorry you have to be here, but you're in good company! : ) We have all been helping each other through our very rough journeys through this darned disease, and we're always there to hold each other up when we're falling down. Glad you could join us!

I was also thinking about thyroid as I was reading your post. I do suffer from both diseases. A LOT of people seem to be stricken with both. Edwin is right. It wouldn't hurt to have that checked out too.

Very glad you were finally diagnosed and are heading for surgery!! Getting that diagnosis is very tough sometimes! It took me 3 years to get my diagnosis. Those were the longest 3 years of my life! I did have surgery in November. Had 2 adenomas removed. I'm still suffering from some symptoms, but am now wondering if maybe these lingering symptoms may be from the thyroid issue and not the parathyroids. I guess time will tell. Unfortunately, it's the painful symptoms that have not resolved, so I still spend each day in quite a bit of pain.

If you have any questions, please don't hesitate to ask. We will all be more than happy to help you out if we can.

Audrey

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Re: Primary Hyperparathyoidism Sufferer - Hello!

Post by danicayetano on Tue May 06, 2014 2:22 pm

Thanks Edwin and Audrey Smile I think in one of my various blood tests they checked for something to do with my thyroid as well; I'll be sure to bring it up with my GP though prior to surgery. I have printouts of every test so I'll need to go and hunt them out. My pre-admission appointment for surgery is next Monday so I'll need to find them by then anyway. It'll be interesting to see how quickly surgery has an effect (if any - fingers crossed!)

In the meantime my emotional health has gotten too unstable and I have now taken some time off work so I'll be sure to trawl through here a lot and look forward to meeting everyone.

danicayetano

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Re: Primary Hyperparathyoidism Sufferer - Hello!

Post by Kathi209 on Wed May 07, 2014 4:00 am

Welcome danicayetano, You mentioned surgery are you having a parathyroidectomy ? Good luck on your surgery , let us know how  you are doing.

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Re: Primary Hyperparathyoidism Sufferer - Hello!

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