I have been diagnosed as having possible primary hyperparathyroidism.
I am a shocked that there is not a group for this disease. Can anyone help with this? So many people think I have something wrong with my thyroid when I say I have it, when in fact it is to do with the parathyroid glands.
I am still getting tests and scans done, but will be talking to a surgeon next week. I was hoping to hear stories from other sufferers, positive or negative. I guess it would be good to hear some of the success stories after surgery. I am feeling quite ill at the moment with lots of symptoms. The level of understanding and support across the medical community varies a lot; there are some GPs who understand the disease but also others who dismiss symptoms. My endocrinologist has been quite dismissive of my symptoms, saying they could all be for other reasons i.e. menopause, even though she has said she is 85% sure I have hyperparathyroidism.
If you have hyperparathyroidism, and are pre or post-surgery, it would be great if you could share:
Symptoms
Test levels including parathyroid hormone, calcium, vit. D etc
Surgery and post-surgery experiences
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sadly, i suspect you wont find many on here with just parathyroid problems. plenty with it as a result of thyroid surgery , but none at present (that i know of) with just parathyroid issues .
Have you found this site parathyroid.com/ ? it is one of the best places i've come across for explanaitons re. parathyroid issues.
I have seen 4 GPs. Two were knowledgable and helpful.
I am seeing an endocrinologist. She is concerned about unnecessary surgery and believes I need genetic testing before surgery. She is dismissive of symptoms and has told me that even if I have surgery I amy not feel better.
I am seeing a urologist for my kidney stones. He is concerned about my test results and believes I need surgery.
I am talking to a surgeon next week. We will see what he has to say!
one member birkie has recently seen a private parathyroid surgeon who she was (so far) impressed with. She will be alerted to your post now i have 'tagged' her, so she may be able to help if you need a name of someone good .
As far as i understand it (which is not much ). you need Parathyroid hormone and Calcium and Vit D all ~ measured at the same time , to assess parathyroid issues .
Do you have the Vit D result , or just the parathyroid/ calcium results ? it may help other who know more then me to give better answers.
I have had lots of helpful advice on there. My hope when I posted on here was to reach others who are suffering or have had a positive outcome so we could share our experiences. I will add my Vitamin D which is 60 nmol/L.
Good morning, I have just seen your post re Primary Parathyroidism. In 2013 I was diagnosed with a parapharyngeal abscess and admitted to Portsmouth Hospital where thanks to their care and treatment I recovered well. However the consultant suspected I had a Parathyroid problem and referred me to Southampton. I was diagnosed with Primary Hyperparathyroidism had my operation in 2014. The op went well, no problems and you can barely see the scar. Good luck, hope all goes smoothly for you too.
Hi Really interested to read this- how have you gotten on since?
I've been feeling awful for a while and had assumed it was my Hypo symptoms. In the end I bit the bullet and decided to pay for a private and extensive blood test.
This came back with calcium out of range, although adjusted it was just within range.
I started to look into this and came across hyperparathyroidism- reading the symptoms it was just like a light bulb moment 💡 I couldn't believe it!
I'm a 49 old male with a partner going through the peri menopause- but I've often said that I too feel like I'm going through it with her! Weird and very odd symptoms- memory poor, very brief moments of mild confusion, pains just about everywhere!, rib muscle aches that move from side to side and tender to touch. I've had visual migraines (as well as headaches) tinnitus for the last 2 years.
Bizarrely i have the same swollen feeling and dull pain under my left ribs. When I'm sitting for any length of time it feels like I've a ball under there.
I've seen a great GP at my surgery who looked at my private results, and when I suggested para, she nodded and agreed - I was taken a back as I'd convinced myself I was just a hypochondriac... I was actually becoming fed up with myself! 🙂 But she agreed to run a PTH blood test.
This test has come back the same as before, with Calcium over and then PTH at top of the range ( although not over) . I've always had low Vit D, a few years ago the GP subscribed a super dose but its still low, even though I still supplement.
I'm trying to get an appointment to see the same GP ( a challenge in itself!). I'm hoping she'll refer me - but I may go privately depending what see says.
There seems to be a lot of consultants that don't know much about PTHs and are dismissive. I'd rather forfeit a few future holidays than feel like this! I've done some reading up and there seems to be a very good Endo at Chesterfield which isn't too far from me.
I had hyperparathyroidism surgery a few years ago, it took a couple of years to get a definite diagnosis mainly because Dr’s don’t have enough experience of it so they dither around not quite knowing what to do.
I didn’t have any horrendous symptoms but my calcium and pth levels were consistently high yet my supposedly hpth expert Endo didn’t accept there was a problem and that surgery was the answer ! Luckily I went to see a very good pth surgeon and had the op. My scans were not clear but my test results were enough for him to go ahead. I had previously had thyroid surgery so my pth op was very difficult due to scar tissue, my calcium level hit the floor post op and I was on calcium for a while, horrible stuff ! Although I only have a tiny bit of a parathyroid somewhere (surgeon couldn’t find it) my levels have been normal since.
I did run a hpth forum for some years and I would say we had many people who had the op and that was job done no more problems, equally we had quite a few who had failed ops or needed repeat ops. Some went over to the Norman Centre in Florida as they believed that it was the only place to get proper treatment, many had to have repeat ops when they got back to UK !
What you need to do is find an experienced surgeon, not easy but it’s vital.
Thanks for replying. I have a phone appointment with a surgeon with an excellent reputation next week. From all reports he is very experienced and knowledgable.
I have an adenoma on or close to my parathyroid, seeing ENT to look at the MRI with contrast on Monday. My PTH blood test was normal mid range. Calcium and vit D not tested at the time, I’ve tested Bit D privately and it’s very low in range, I’ve been supplementing that myself with advice from Vit D society shared here. I’m an inquisitive type and worked out that if I needed surgery I’d have three options in terms of experts, Oxford, Imperial or Florida. Someone here kindly replied to confirm a good experience with oxford after a poor experience locally. I used the hospital website to look up my local surgeons and their operating history, they are all Ear experts so if it turns out I need surgery I’ll have to ask some questions about where that happens. Sorry I’m too early in my journey to give you the exact information you are looking for but the more messages you get the more visibility your post has and more likely people find it. Treating my thyroid hormone issues and testing vitamins and supplementing accordingly has returned me to good (not perfect) health, the aches and pains are receding. 🌱🦋🌱
Hi there, Thanks so much for replying! If you haven't already I would recommend adding yourself to this facebook group facebook.com/groups/Hyperpa.... If you message me I can talk to you more about where I will be for ( hopefully) surgery.
I’m ok thanks, still have the kidney stones and Lithotripsy to break them up didn’t work so I’m stuck with them. I also have other issues ( heart, spleen and gallbladder) which may or may not be a result of the long term high calcium levels.
I realise it's not the same as primary hyperparathyroidism but I've seen normocalcaemic hyperparathyroidism mentioned within post threads a few times recently.
My knowledge is limited as I've only recently started reading around the subject as my ENT surgeon is suggesting I may have normocalcaemic hyperparathyroidism as my PTH levels are above range, calcium low normal and vitamin D was low.
I don't have my full test results (so this is vague) but my PTH was 8.9 pre thyroid op and 11.3 post op (6.9 upper limit on the range)
So I'm currently taking vitamin D and to be retested again in about two weeks. Hopefully by then my PTH will have dropped and be within range.
I've had a severe vit D deficiency many years ago so concerned for my bone health now. PTH was never mentioned or tested then.
I was prescribed Levothyroxine due to tiredness and below range FT4 so hoping my PTH levels will drop.
Parathyroid issues are supposed to be quite common especially for post menopausal women. I'm concluding from that there then must be lots of women with undiagnosed hyperparathyroid problems but be completely unaware.
If I've misunderstood that hopefully someone with more knowledge will correct me.
I'm on a parathyroid site (hyperparathyroid UK action 4 change)..this site has helped me immensely and after my first diagnosis of primary hyperparathyroidism in 2004 endo did watch n wait ,I was diagnosed again in 2020 and again endo wanted to do watch and wait..in essence wait till both my PTH and calcium go sky high which does not always happen, I recently saw a private parathyroid surgeon in Oxford who as identified a 6/7mm nodule in my neck by ultrasound scan, something the NHS refused to do,he as diagnosed me with normocalcaemic hyperparathyroidism.
Unfortunately for me I had full thyroidectomy in 2019 after suffering with awful hyper symptoms,. Again GP failed to recognise my symptoms ,I went into thyroid crisis after my body couldn't take the anti thyroid drugs, so I have a double whammy as I'm struggling with thyroid medication ATM.
All my symptoms were put down to my menupausal state (easy cop out for GP/specialist) no endo believed I had a parathyroid problem even when they both wrote to me saying it was possible I have this condition due to the 3 blood tests, my PTH was out of range as was my calcium on 3 occasions, but my surgery did my bloods wrong after these 3 and I felt like I was fighting a loosing battle with the endos😠....the correct way to test is (PTH, calcium,vit D all in one draw) the PTH must be done in a EDTA tube and must be processed within 3 hours of draw unless put on ice, then magnesium, phosphate.
Primary hyperparathyroidism/ normocalcaemic is something some endos don't understand, my PTH and calcium went out of range then went back into range so the endo said "ho your ok now" with this disease the calcium and PTH can swing in and out of range so one test can show out of range and another can show back in range unfortunately the in range give free range for endos/GPS to dismiss the condition..as I found they wouldn't retest my blood to see if my calcium and PTH had remained in range, only finding it had gone out of range again after I was rushed into hospital passing a kidney stone🤦which is part of this disease!!, I can tell you to get all print outs of your blood work! you can still have a parathyroid problem with a calcium within range and a PTH within range both being at the top end of normal.
Example... When a healthy person has good health there PTH and calcium will do the see saw method being if one is upper ie, PTH the other will be lower , but in my case both my PTH and calcium are just below the ref range(very top end) meaning I have a bad relationship between PTH and calcium, this as I say is something endos can't wrap there head around, because both PTH and calcium are what they say are in range 🤦 in the same way if a patient presented to an endo with a TSH sitting at the very bottom of the range and there T3 and T4 were sitting at the top of the range the endo would still insist they are ok even if they present with hyper symptoms.. they focus way to much on levels and insist you can't have symptoms with levels like this🤦
My journey as been a long one and since 2004 I have gone on to develop kidney stones, ostiopein in total spine and thigh, calcified tendonitis, calcification in joints, knees and ankles,heart (calcium deposits of joints/heart due to untreated parathyroid disease) lost 5 teeth ☹️this disease as ruined my life I'm now disabled with swollen painful joints, my symptoms are constantly on the toilet to pee,utter thirst, headaches, tremors,sweating, bone vibration,very weak sensation throughout my legs, I'm now waiting to have a pet chlorine scan at Liverpool, to which my surgery are fighting 😠 eventho the parathyroid surgeon as found the nodule in my neck😠😠 I'm sorry to end my post to you on a bad note... but I have no faith in our health care system anymore, I hope you fair better than I have and hope you get an understanding specialist who understands this disease👍,best of luck💓
I'm sorry this post is a long one...but the condition of hyperparathyroid is complex💓💓💓💓
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