Seven months post-op

Hi everyone,  I haven't posted for ages, but I do keep dipping into the forum to see what everyone's up to.  The reason that I'm writing this now is to give hope to those who don't get immediate relief from symptoms.  I think that the website Parathyroid.com is great, but the only problem is it does give the idea that straight after surgery you will feel brilliant.  It seems to me that this disease is very complicated. Everyone's story is different, so maybe it's best not to expect instant results.  If that happens for you, then you're one of the lucky ones.

It's now seven months since my second parathyroid surgery.  (The first, unsuccessful operation was six years ago.) Although my blood levels became normal straight away I can't say I really felt that much different.  The only symptom to resolve immediately was my thirst.  I used to wake up every night gasping for a drink of water, and within 24 that ceased.

Apart from that I was really worried that I was starting with dementia!  Yes, I KNOW the brain fog is meant to lift immediately, but the opposite happened with me.  I started to find myself doing strange things, such as putting a yoghurt in a drawer instead of in the fridge, going upstairs for something which is always kept downstairs.  I'm sure you get the picture.  The interesting thing is I wasn't like this before my surgery.  However I'm very glad to report that as the months have gone on, this stage has passed, and I'm now feeling much more mentally alert, and ready to tackle new challenges.  I've not felt like this for ages.  (I didn't want to post about this problem earlier, as I didn't want to upset anyone who was about to go for surgery.)

Onto bone pain.  I've had a lot of this, again much more than before my surgery.  I'm not sure whether this is settling down or not yet, although a problem I had with one toe, which a podiatrist called osteoarthritis, but which I always thought was pseudogout, has gone completely, so I think I've been proved right on that one.  As far as the rest of my joint pain goes, I'll have to wait and see what develops.

Gradually over the next few months there have been other changes, but all so subtle that it's only when I think about them carefully I realise what has happened, eg, no more indigestion, (never a huge problem, but I certainly used to get it), my blood pressure is now much more normal, and may be able to reduce to one tablet instead of two.  And I have just realised during these last few weeks, I'm not nearly as anxious as I used to be.  It's really hard to find the words to explain this properly - all I can say is I just feel different. 

 In fact I've felt so different just recently that I asked my doctor for some repeat blood tests, because I felt very confidant that they would be completely normal.  Up until now I've always had it at the back of my mind that I still had a parathyroid problem.  Anyway, I've just got the results back, and sure enough they are better and more normal now than they've been for the last 13 years, even better than they were immediately after my surgery to remove two parathyroid glands.  So now I know absolutely - I really am cured!  I can't tell you how good that feels.

Here are my latest results:  Calcium 2.38 (corrected 2.35)  American values: 9.52
                                         Parathyroid hormone 4.1         American values: 38.6

On Dr Norman's chart this shows I'm in the completely normal range.

I send you all my very best wishes for a successful outcome to your problems.  Keep fighting!
Love Rosie11011

Thank you so much for posting this, Rosie!

We don't hear enough from people who have gone through it and come out the other side.

I am just so pleased for you - and it gives hope to everyone still struggling.

Enjoy getting the rest of your life back! And keep posting on all other improvements/otherwise.
We need to know!

Love from Tigerlily xx

PS Rosie -

For those of us with brain fog, can you let us know who your surgeon was, NHS/private, and at which hospital, and how you rated the hospital and your treatment?

Many thanks
Tigerlily xx

Yes, it's so great to hear about life after pHPT, both the good and the bad. 

There's not so much out there about the journey to recovery.

Thanks so much for sharing,

Dee
xxx

How lovely to hear about life after surgery, Rosie As Tigerlily says, it's so good to hear of finding life on the other side of HPT. 

Did you have a bone scan before your surgery? I understand that it can take some time (years,  for instance) for bones to recover from osteopenia/osteoporosis after surgery. 

It's encouraging to hear of post surgery recovery, so thank you very much for posting. 

Love 
Brigitte x

Thank you so much for your replies.  Tigerlilly, my surgeon was Mr Robert J. Watson, a general surgeon at the Royal Blackburn Hospital.  He is a general surgeon but does 95% of parathyroid operations in this area, and besides that, he told me that 'he had and eye for them', which did give me confidence in him.  Not for me the minimally invasive surgery however, as there were no facilities for that, and mine was more complicated in that I had undergone surgery 6 years previously when the parathyroid glands could not be found.  However I was not too bothered about having a large scar, and 7 months on I can honestly hardly find it myself!  I can't believe how well it has healed.  Also he was able to do a full neck exploration.  He found and tested all four glands, and removed two.  So I do feel that although he was not just an endocrine surgeon, he did a good job for me.


Brigitte, yes I did have a bone scan, and it took years to arrange it.  I have been diagnosed with osteopenia (thinning bones) with osteoporosis in my wrists. In addition to that I have had tooth resorption in one tooth, which my dentist tells me is usually due to trauma, but I did my own research, and was able to tell him (!) that this can also be caused by hyperparathyroidism.  (What it means is the body is literally eating away at the root of the tooth.) He did some major dental work to repair it, but dental Xrays two weeks ago show that it has continued to deteriorate, and I may now lose the tooth.  However I feel that it is early days, and probably this deterioration will have stopped now the parathyroid problem has been fixed. Like osteoporosis, I should imagine this condition also takes years to mend.  So he has agreed to leave it alone for the time being, and if it doesn't get any worse I may be able to live with it for a bit longer.  Only time will tell.


Thank you all for your good wishes.  I will keep looking at this site.  It was such a comfort to me in the days when I was trying to get my endocrinologist to agree to surgery for a second time, and I'll never know why I had to wait 6 long years for this!  I mean, what on earth is the point?  Surely it costs the NHS more in the long run than to simply get on with it!


Best wishes to you all,
Love Rosie11011

Hi Rosie it's really great to hear you are feeling so well after an extended period of recovery.
I'm sure we would all be more than happy to recover slowly as long as we knew that there was hope and a light at the end of a very long tunnel.
It really gives us hope that one day we will be as well as you are and that all this fighting is wort it in the end.
I'm so pleased for you, enjoy your new healthy life.
Amanda xxxx

Thanks for the surgeon details, Rosie - it sounds as though he can be recommended.

Love from Tigerlily xx

Yes Tigerlily, even though he's a general surgeon, not just the recommended endocrine surgeon, I found him really good.  I was an NHS patient, but at my first consultation with him he was very understanding and knowledgeable, really easy to talk to and certainly gave me a feeling of confidence in him.  I would describe him as a gentle giant!  It seems that he was very thorough, and like I said previously, although it was not minimally invasive surgery and I had a big scar, I really do have difficulty finding it now.  I am amazed at how well it has healed - almost as if it had been done by a cosmetic surgeon with a view as to how it would look.  I can wholeheartedly recommend him.
Love Rosie

Fantastic, Rosie - a wonderful result.

I expect Mr/s Admin will add him to our forum surgeon's list.

Love from Tigerlily with        for luck!!   xxxxx

Good to hear from you, Rosie! And great to hear your surgery was a success, and you are healing so nicely! No, for many of us recovery is not immediate. It does take time. It does sound like you are making great strides in the right direction though! And your levels look great!! I'm so very happy for you! I do hope things continue to improve for you until you are 100% again, and I'm guessing that time is not far off.

Audrey