I've not posted on here in a few weeks I'm not feeling at all right, my PTH hormone is going up everytime they do bloods and my calcium has been rasing intermittently my records show this from 2003 onwards the last one was just recently hence the test for hyperparathiyroidism I've had my scan.) . Looking through my records I came across some bloods done in 2004 when my consultant said I had hyperparathiyroidism/ thyrositis? It's cobbled Di gook.. As my bloods show my TSH was suppressed but my T3 was normal level( no T3 results on the letter that I can see) and no T4 was done! The consultant left it at that.. Further on in the year after me going to my gp again and telling him in no way were these symptoms of the menupause, he did bloods they again showed a very low TSH and a normal T3 no T3 blood results on letter tho.. No T4 done! This was now 2015 I was told again it was the menupause I was given seatreline and propranolol to help with the palpitations these did not help.. Some months after I was admitted to hospital vomiting blood and passing blood.. No thyroid bloods were done only tests which turned out to be colitis. I suffered until 2018 when another gp saw me and immediately said you have hyperthyroidism!! Yes I did turned out to be graves... But tucked in my records their is mention of hyperthyroidism but they were going of my bloods and not my symptoms this goes back to 2017..so nothing was done it does seem they had an inkling I had hyperthyroidism all those years ago and did nothing and my gp did not look back in my records when I was very ill in 2018 and going in to thyroid storm in Jan 2019..even after me telling him I was diagnosed with hyperparathiyroidism in 2004..it beats me why he never put this puzzle together when I started to be ill.. Just a thought if he did I may not have list my thyroid I think I was left so long with these symptoms my thyroid went toxic and I had thyroid storm... The NHS could have saved a lot of money if they had treated me in 2004 onwards and I could have been well instead of this hell!!
Sorry for the long post but here's my advise look through your medical records check bloods ect because from what I've seen I'm shocked!!!
Take care all.. ❤️❤️
Written by
birkie
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Parathyroid and thyroid are not connected in any way, if you have hyperparathyroidism it's a seperate problem to your hyperthyroidism and you need to have the parathyroid adenoma removed, if your Endo has no experience with parathyroid disease you must change to one who does because it won't get better on its own and the longer it's left the worse it will be, you need to be referred to a surgeon.
I'm under a parathyroid specialist now I've had my scan done... I'm glad I got all my medical records because this is mentioned in my records in 2004 when my gp told me I had hyperparathiyroidism but when I saw a consultant he dismissed it and that was that... I continued to feel unwell and went back several times my consultant noted raised calcium with raised PTH but said it was borderline, as I had no idea what hyperparathiyroidism was I just went with what the consultant said. I was diagnosed with ME/fibro some time later and that stuck.. Move on to 2017 to 2018 when it became so bad I thought I was dying turns out it was hyperthyroidism (graves) I know more now than I ever did about parathyroid and thyroid I know parathyroid controls calcium.. I have no thiyroid and my new consultant wants to take me off T3.. And as I'm no better I'm willing to try T4 lactose free.. As for surgery he wrote saying that surgery could be complicated as I've already had a thyroidectomy and the laryngeal nerve could be damaged.. I'm waiting on a bone density scan and a US kidney scan.. But wonder why its taken so long to get diagnosed with both hyperparathiyroidism and hyperthyroidism as they were mentioned in my medical records some years ago it beggers belife 🙄
Surgery needn't be complicated if done by an experienced surgeon who does regular parathyroid ops.
I had already had most of my thyroid removed many years before I had parathyroid surgery so there was scar tissue and my op did take a bit longer but my surgeon did an excellent job and it had to be done so you just have to have faith in the surgeon.
It typically does take a long time to diagnose hpth mainly because most Endos don't come across it very often if at all, I had to search out an e experienced private Endo and even she took a year to accept that hpth was the problem !
You may well find you have kidney stones due to long term high calcium and that's a whole new problem to deal with, I had Lithotripsy to treat the stones but it failed and the stones are in an inaccessible position so surgery isn't an option so if they cause an issue I will have to lose a kidney.
You mentioned kidney stones I was taken in hospital last July having passed a stone I had blood in my urine they sent me for some scan but found no stones only evidence I'd passed one.. I'm sorry to hear yours are inaccessible that's so bad for you I hope you manage to keep your kidney ❤️ for years I've had loin pain and utis and kidney infections but no links were made to calcium.. I've now got calcium deposits in my wrists, knees shoulder, heart, and brain.. I have a lump on the bottom of my spine which causes bad back pain but my gp isn't bothered about it.. 🙄 And has not sent me to anyone concerning it... One thing as I'm sure you know only to well kidney stones are the worst pain ever... 😩😩
I wish you luck and hope you are doing OK.. And many thanks for your relpys
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