Parathyroidectomy follow up appointment - Bone Health

Bone Health

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Parathyroidectomy follow up appointment

Fran57 profile image
17 Replies

Hello. Those of you who know of me will know that I recently had a parathyroidectomy because, having been diagnosed with osteoporosis I checked on my blood calcium level which was a tiny bit raised and then my parathyroid hormone levels - also a bit raised and researched and found out that osteoporosis can be caused by raised parathyroid hormone levels.

Well, I have just been to see the consultant and he tells me all my levels were back to normal within a very short time after the operation.

This should mean that my bone density will, hopefully, start to improve also.

There are lots of advantages to having this operation,but this was, of course, my main reason, since I do not wish to take bisphosphonates.

I know there are no guarantees but he suggests I have a repeat DEXA scan done in three years and hopes the bones should be improved - at least to the same degree as if I was taking the medication ( without the side effects).

As I say, no guarantees but, on balance, I believe it's worth a try.

Anyway, I did say to some of you that I would let you know how I got on, so...

My main question now is what to do about whether or not to take any calcium and/ or Vit.D supplements....

He suggested I do, for the next few years, but, having again read up on them, there seems to be very little advantage and still some risks that I don't think I'm prepared to take.

I would be very grateful for anyone's views.

I am 60, by the way, in good health, with a good diet ( not perfect, but very good) and I live in the UK. I walk a lot and still work full time.

Many thanks for reading,

Fran 😉

17 Replies
Met00 profile image
Met00

In the UK it's now recommended that everyone take a Vit D supplement in the winter months. It's very difficult to get adequate amounts from diet alone, and the sun is only high enough in the sky to give us Vit D from April to September, or even fewer months than that, depending on where you live.

Kaarina profile image
Kaarina

I too would say continue with the Vitamin D tablets prescribed by your GP. Do you know what your Vitamin D levels are, both in the spring/summer and autumn/winter? My levels stay the same as I am tested twice a year. I do take a Vitamin D capsule prescribed by my GP but I read somewhere that GPs may soon stop this. In some areas GPs have already refused to prescribe it for some time.

I do eat lots of sardines (with bones) as I love them! :) Good source of Vitamin D.

Regarding calcium, if you have enough in your daily diet there is no need to take calcium supplements. On discussion with my GP we agreed there was no need for me to take extra as my daily diet includes enough.

Fran57 profile image
Fran57 in reply to Kaarina

Thank you.

I will eat sardines quite happily, unlike the prunes I am forcing myself to try! 😉

Kaarina profile image
Kaarina in reply to Fran57

I take boron supplement because I cannot tolerate (or my insides cannot, to put it politely!) the prunes although I do like them.

Fran57 profile image
Fran57 in reply to Kaarina

Ha! I really don't need that effect .... I already struggle if I eat wheat. I'll see how it goes .

Sardines for lunch tomorrow! ☺️

Thanks so much for your reply.

HeronNS profile image
HeronNS in reply to Kaarina

algaecal.com/algaecal-ingre...

Kaarina profile image
Kaarina in reply to HeronNS

Thank you for the link, Heron. I eat all the nuts mentioned daily and sometimes sultanas. Red apples, oranges and onions daily too. :)

joanne33 profile image
joanne33

After removal of my parathyroid adenoma the consultant advised a calcium/vit D supplement which my GP prescribes. I also take the whole lot of vit K, magnesium, boron, prunes etc (and a vit D spray as i have coeliac disease so don't absorb some things well through my gut). I also walk my dogs daily. After 2 years my Dexa scan showed big improvements in my hip amd spine, so of course I'm still taking it all!

Fran57 profile image
Fran57 in reply to joanne33

Hi Joanne.

Fantastic news about your Dexa scan- well done you!

I do lots of walking and stair climbing and wear quite a heavy backpack to work. I have a healthy diet and am trying to include all the things like prunes ( yuk) and sardines ( eating them as I type) and I’m hoping to see an improvement but my Dexa scan is will be in three years from now.

I’m so glad your parathyroidectomy went well . Until I researched it I had no idea!!

Keep in touch. Keep doing what you’re doing!

Fran 😉

jamr profile image
jamr

Hi Fran57, were you diagnosed with hyperparathyroidism, or were your levels such for both calcium and parathyroid hormone that they suggested removing it? What are the consequences of having it removed? I have osteoporosis and am still working through possible causes. My parathyroid seems OK, but Vit D was low so I am hoping this is the smoking gun.

Fran57 profile image
Fran57 in reply to jamr

Hi. When they told me I had osteoporosis I didn't want to take the medication, my blood test showed a very small raised calcium, so I asked for my parathyroid levels to be checked. That was also a bit raised, so the surgeon I saw checked my bloods again and agreed that I had hyperparathyroidism . I had never had an operation but if there is a chance that removing the affected parathyroid has improved my bone health then I and the surgeon thought it a good move. He said that if it is the hyperparathyroidism that's causing the osteoporosis then the medication would have no effect whatsoever anyway.

The bones should improve to the same extent ( over the next 3 years roughly) as they would by taking the medication.

There are other reasons for curing the hyperparathyroidism - much less likely to get kidney stones, arrhythmia and much less likely tohave a fracture....worth looking at the video of Dr. Michael Yeh at UCLA about the after effects of parathyroid surgery!

Good luck. Keep in touch. Are you in the UK?

Fran 😉

fairgo45 profile image
fairgo45

Hi Fran

Im new to this board so hope you dont mind me jumping in on your post.

my levels of calcium are high side of normal and PTH quite high at 10 im told i might have to have a parathyroidectomy and im worried what this is like and does it leave along scar .

Thanks Janet

Fran57 profile image
Fran57 in reply to fairgo45

Hello Janet.

I don’t mind at all. I had never had an operation before and I was terrified!

I needn’t have been worried.... it was extremely straightforward and there was the tiniest scar for a few months and now nothing.

I would wholeheartedly recommend you go ahead with the operation.

I am expecting to have a follow up DEXA scan early next year to see what difference it has made.

I would say I did decide to go to the surgeon I believed to be the best in the UK....since it was my first ever operation and I was completely reassured by him. I had a couple of scans beforehand too.

Good luck with whatever you decide, but please keep me informed .

Take care,

Fran 😉

fairgo45 profile image
fairgo45

Thanks Fran

What tests did you have to diagnose parathyroid problems mine was just picked up on a general blood test that calcium was a little high followed by the parathytoid test that was also a bit high subsequent tests were lower but because I had kidney stones a few years ago they said I need to have this op done

I'm not convinced that I need to have this operation can you tell me more about your experience and what test results made it important for you to have it done

Thanks Janet

Fran57 profile image
Fran57

Hi Janet.

Yes, like you, I had a blood test ( I asked for one...see below) and my Parathyroid Hormone level was7.4 and after surgery it was 1.4 within minutes (they check it immediately to make sure the gland was the only one affected... it can be more than one, but very rarely.

I did loads of research ( I always research everything to do with health matters) before I realised it was a good idea, because, as I said, I had never had an operation. Everything I read said that it was importation get rid of the little tumour that grows on one of the parathyroid glands... it can lead to osteoporosis and kidney stones in years to come.

Believe me, Jane, I really did so much research I could have taken an exam in the subject.😉 It was me who asked my GP to check my levels, because she did not know very much about it at all ... and she definitely did not know of the link between hyperparathyroidism and osteoporosis. She said she was glad I did the research because now she would be aware for other patients.

I really did not want to take any medication for the osteoporosis which was a total shock when I was told I had it and then I discovered the link. The surgeon that I found told me that it didn’t matter how much osteoporosis medication I took, it would not have worked all the time I had hyperparathyroidism. That convinced me to try to improve the osteoporosis with the operation. I won’t know how improved my bones are until the next DEXA scan nest year... but I am hopeful...he told me there wouldn’t be much point in testing before then because the optimum time would be after three years.

Every time I hear of someone diagnosed with osteoporosis, I want to ask them to get their Parathyroid Hormone levels checked ( just in case that can be the problem; it isn’t always). I really would never have had the operation if I wasn’t 100% convinced.

I feel so lucky that I was able to discover the link, because otherwise I would have just been wasting my time ( and possibly causing no end of problems) in taking the medicines offered.

Obviously, everyone is different and I don’t profess to be a doctor, but you should really research on safe websites and make up your own mind.

I hope that has helped, please ask again, if you think I might be able to answer any more questions. I am convinced that not many people even know that we have parathyroid glands. I certainly didn’t until I looked in to it and I’m really glad I did.

Good luck ...read up on it.

Fran 😉

fairgo45 profile image
fairgo45

Thanks Fran

That was really useful advice.

I had broken my wrist a year ago and had a bone density scan which showed Osteopenia not Osterporosis .

I live in New Zealand so am not sure what I'm looking for in a surgeon as I had also never heard of parathyroid disease.

My Gp who is Scottish had fortunately so sent me to see an endocrinologist but he is humming and harring about treatment because my levels of calcium are now normal though the parathyroid test was 10.1 he talked of another condition called FHH but research tells me this is very rare so I'm not sure about this.

Are you a private patient as I am not so would I get the best treatment in the public system.

In your opinion is there any danger in delaying it?

I'm due for a repeat scan next week so will know more.

Thanks so much for taking the time to explain things to me

I will let you know the outcome

Thanks Janet

Fran57 profile image
Fran57

Hi.

I’m sure you can look up a specialist in parathyroid surgery where you live. I did go privately to a surgeon who specialises in this because I was so worried about having my first ever operation and we belonged to a private health scheme, which I had never used.

I would suggest you look into the surgeons who do this operation on a very regular basis and particularly look out for one who does a “ minimally invasive procedure” - this is a shorter operation with an incredibly tiny scar.

I watched several operations being done and, as I said before, I did a lot of research, so that I was armed with the questions I needed to ask the surgeon.

I would have to reread all my research in order to be absolutely sure, but I don’t think there is a problem with delaying the operation for a while. But everyone is different and I am not a medical person. I discovered I had osteoporosis in about December of one year and had the operation in May of the next.

Take care, good luck with the research. Let me know how you get on.

Stay safe. ( very jealous of your brilliant prime minister!)

Fran 😉

P.S. in the UK, even in the NHS, we can go to a surgeon of our choice. I travelled two hours to get to mine ( and we don’t drive!) It took a bit of organising but it was fine.

By the way, you can often go home the same day, depending on what time you have the operation. I did stay in for one night.

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