So after a lot of toing and froing, practically begging on my part - I finally got my throat cut on the 23rd of November! One enlarged parathyroid gland (almost 4 times the normal size) removed, along with the entire right thyroid lobe, which had a nodule embedded in it. It turned out not to be an intrathyroid parathryoid gland. Both PT's on the left side were normal, so hoping that #4 wherever it may be, is also normal! I really do not want to go down this road again.....
Recovery hasn't been as instantaneous as I had envisaged - losing half your thyroid and having the other half poked and prodded, causes a few probs. One minute I am hyper with my heart racing and night sweats - the next I am hypo, no energy at all, sluggish. My bp is still unstable and I still have horrible reflux - but in saying that, I still feel a hell of a lot better than I did BEFORE the op!!!!
My right eye no longer twitches 24/7, the brain fog is clearing along with the debilitating fatigue, my lower back pain has improved so much and I am sleeping better. I am hoping that there are even more improvements coming along the way, but just for what I have gained right now, the operation was definitely worth fighting for!
I was diagnosed with Normocalcemic Hyperparathyroidism - not a nice, easy, straight forward candidate for surgery. My calcium never got 'really' high even though my PTH was up there and my Vitamin D was very low to start with, confusing the experts who thought I had Secondary Hyperparathyoidism, due to vitamin D deficiency... Like most people in my situation, I was told to take vitamin D and see what happens.
Anyone in my position would know that taking vitamin D makes your symtoms a whole lot worse - even sitting out in the sun for too long would leave me out of action for days! But you feel as if no one believes you that the pain and fatigue are so bad, you have to struggle just to get out of bed every morning. Even friends and family members don't get it.
I had one endocrinologist tell me that all I needed was vitamin D - nothing else was wrong with me and I should try acupunture or physio... The only acupunture I wanted to try at that moment was sticking pins into a voodoo doll made in her image! The next endo, who actually seemed really nice at first - turned out to be a whole lot worse! Telling me I was a sad, lonely housewife - pining for my hubby as I couldn't cope on my own and tired all the time because I had young kids. If I didn't stop my naughtiness - his actual words - and take my antidepressants, anti inflammatories (even though they send my bp soaring) and high doses of vitamin D, then no one could help me. I looked too good to have anything really wrong with me.... I argued that the vitamin D made me feel so bad that at one stage I was actually bedridden, to which he replied with "Rubbish!" Apparently I wasn't taking enough... So I mentioned how I had high bp and couldn't take anti inflammatories - he asked who told me that? That was also rubbish.....
Thank goodness my surgeon had a heart and let me 'force' him into operating on me! A statement that made me laugh as I doubt anyone could force him to do anything he didn't want to. I did kind of badger him, but then my symptoms were pretty bad (bad fatigue, all over pain - especially my lower back, hips and thighs, twitching, bad brain fog, insomnia, getting up every 5mins to go to the loo whenever I did lie down, anxiety, high bp, reflux, weight gain, gallstones, kidney and pancreatic pain, feeling dehydrated all the time, etc, etc, etc.....)
He will never know how grateful I am that he took a chance on me, hopefully my persistence may help others in the future. I sure hope so :)
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I would love to see those Endo's faces when they read the reports sent by your surgeon...Don't know how they sleep at night seriously!
ReplyDeleteSo glad you are on the mend Gladys :)
It will be me lagging behind you soon ;) xx
Not much longer to go Hayls, hang in there! Diagnosis first and then the real fight begins :) Totally worth fighting for your own life though right? No one else really understands how it feels, so we have to do it for ourselves.....
DeleteI didnt know you wrote Gladys. Good for you. I hope once you get feeling better again that you will be able to continue to write. I wished the whole time I was sick that I could pass the time doing something like that but the fatigue and brain fog were so bad there was no way.
ReplyDeleteIt certainly made things hard Marion, I can tell you! I am pretty stubborn though and was determined to write these books. I also had a court case on the go as well.... Even now, I have no idea how I actually managed!
DeleteSome temporary fixes...accupunture, massage, epsom salt soaks. But the Big Daddy of all therapies seems to be Qi Gong ( for me) which hubbyis studying and I am hi willing patient. Carrie
ReplyDeleteI am now 3 and a half weeks post op and my bp has finally stablilized. I still have bad body aches and reflux, but hoping they will subside soon too. I am so very glad that I pushed for this surgery - I feel as if whatever has been slowly poisoning me for all these years, has gone. Now I can start to heal :)
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