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Then and Now

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Then and Now

Post by Londanna on Tue Oct 28, 2014 6:35 pm

Hello All – Then and Now

I’d like to introduce myself to you.   My story is somewhat different to that which most of you have experienced but also very similar in some respects.    Some years ago, in my mid twenties, whilst I was living in Norway and just after the birth of my youngest daughter, I was admitted to hospital as an emergency following excruciating pain in my right side, back and stomach.   I was diagnosed with a large kidney stone on the right side and operated on to remove it.  This was a fairly major operation at the time as the stone was far too large to remove microscopically but I recovered quickly and went about looking after my daughters and husband, learning to ski and generally enjoying life.   A couple of months later I received a call from the hospital, they wanted me back because my bloods were showing a very high level of calcium – I needed another operation to remove a parathyroid gland and all would be well after that.  There were no other examinations, no tests, no endos, just the surgeon and, being young and anxious to go on holiday, I just accepted the need and had the operation.   The surgeon took out two glands and again, I recovered quickly, was discharged and went on holiday complete with bandaged neck.   I was told that I should have no other kidney stone problems but to ensure my bloods were tested at regular intervals, just in case, which I did.

 Indeed, for very many years I was lucky enough to experience excellent health.   We returned to the UK and life has been good.   However, suddenly, almost three years ago in the week before Christmas I started vomiting badly.   Everyone thought I had the winter vomiting bug and it did clear up so that I was able to enjoy Christmas as usual.   Things were fine for a week or so after that but then the vomiting started again and this time lasted for two weeks.   I was unable to leave the house until it ceased and lost many kilos in weight.   As soon as it cleared up enough to go out I went to my GP feeling absolutely wretched.   My usual GP was still on sick leave and a trainee GP doctor interviewed me.   It was my lucky day.   Anxious to understand what was wrong and make an impression on his student placement he asked for comprehensive bloods, including pth, calcium and pancreatic tests, also a gastroscopy.   The gastroscopy showed there was nothing wrong with my stomach but the bloods suggested that I might have hpth!!   Just to make sure nothing had been missed, he ordered an ultrasound scan of my abdomen which revealed an enlarged left kidney with a stone causing a blockage.   So there were two things – another huge stone and hpth – I had a diagnosis!

Further investigations showed that I had another very large stone (this was dealt with easily?  with another operation to remove it) but with regard to the hpth, OMG that is where things started to go sooooo wrong.   I was referred to the local endo and then to his ‘general’ surgeon at the local hospital.   For two years they messed me around.   The overriding emphasis was ‘wait and see’.   What for????   They knew exactly what was wrong (I had a positive diagnosis already and had almost every symptom under the sun associated with hpth) .  I was feeling miserable and unwell all the time.   A large blob of fat had deposited itself on my stomach, I looked as if I was about to give birth and my kids said they had never seen anything like it.   It certainly wasn’t because of over-eating.   My last appointment with the local hospital was when I was told that I should make sure I drink a lot and move around a lot, that I was doing fine and they would see me in four months time to see what progress I was making.    Progress??   Were they expecting my glands to stop over producing all by themselves???   I came out completely dazed, asking myself if this was a money thing (my local hospital had financial problems at the time) or if they had just written me off as this was going to be a second operation and they didn’t really know what to do.

Fed up and angry, I came home and started to research other options.   A week later I went back to my GP (who by that time had returned from sick leave) and she suggested I seek another opinion.   I was going to ask anyway and had all the information to hand.   She agreed to write to the Consultant I suggested.

Unbeknown to me at the time, I had hit the jackpot.   I got an appointment pretty quickly and within seconds, from reading the referral, my Consultant stated that he disagreed with my present ‘treatment’ to date, I definitely needed surgery, and that my treatment in Norway had been excellent.   However, he also said that with this amount of disease at such a young age there must be a hereditary element and referred me on to a Consultant endo (in the same clinic) who specialised in hpth.   I repeated all the tests (which were done over a three week period) and was also referred to a geneticist.   Sadly, the result from the genetic tests revealed that I do have MEN 1 – I have had it all my life but I had been completely unaware of it.

I had my remaining parathyroids removed immediately the results from genetics came through, and I now have one third of one gland left.   I spent five days in hospital whilst my levels adjusted but my part gland is working really well and I feel FANTASTIC and so well.   There have been no nasty residual effects or bad days, my calcium levels dropped fast but because I was in hospital on two hourly obs, it was all managed fantastically.   The blob of fat is disappearing- slowly – but I hope to be able to speed this up when I return to the gym in the next week or so.

I now have to deal with the MEN 1.   When I spoke to my geneticist she asked me what I wanted to do, whether I wanted to return to my local team.   You can imagine what I said, not b****y likely, I am staying where I am.   She replied ‘Good.   You don’t want to deal with the kind of endo that works locally’.   I was amazed, docs don’t usually say that kind of thing.   When I saw my Consultant a week later he gave me my results and said that the team were delighted.   He also suddenly looked very serious over the top of his glasses and said ‘I understand you came here wanting a second opinion’.   I told him that I had, because I was so unhappy and wanted something more positive done’.   His reply – ‘GOOD’.   In the kind of way that suggested ‘with that decision, you’ve saved your life’.

Now I am undergoing MRIs to see if there is anything else wrong and I will have tests, including an MRI every three years, bloods and ultrasound scans more often, for the rest of my life.   If there is already something, it will be dealt with straight away.  There is a good chance that nothing else will occur but I will always be at higher risk than others.  How lucky am I?   He also told me that he would continue looking after me, and that there is a comprehensive team of experts already in place for me to provide rapid treatment should another problem occur.   I am an optimist by nature but I feel especially lucky in this.

My one sadness is that I have, in all probability (because this is a hereditary disease although I understand it can also occur spontaneously from time to time), passed this on to one or both my daughters and I feel guilty and sad about that.   They are both having tests, as is my sister, to see if they are affected.   But even this, in an obscure way, has come about at the right time.   My eldest daughter is about to undergo IVF (not related to MEN 1) and if she is found to be positive, this disease is one of 20 that can be screened out before implantation.   So even if my girls are positive, my grandchildren will not have it.   Anyone who is positive will be screened periodically in the same way I will be and my Consultant has already offered to accept one or both my daughters as patients if necessary.  Again, I feel very very fortunate for this.

 So, although this isn’t the result I wanted, and MEN 1 definitely wasn’t on my wish list, things could be very much worse.   I will be very closely and properly managed from now on.

I do sincerely hope that you all feel very much better soon.   I am testament to the hpth operation being very successful.

Anna

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Re: Then and Now

Post by Hadleigh on Tue Oct 28, 2014 7:38 pm

Welcome Anna

Wow what a history but absolutely great that you are now being looked after so well. Its also good to hear when people do well after their pth ops, as you may have read 2 of us have recently had ops but have not yet experienced the "cure" so your post does give us hope that it will happen.

I also have a kidney stone and a kidney cyst and am waiting to see someone about it, my GP is of the opinion that nothing needs doing but I went over her head and got my surgeon to refer me, I hope they sort it before it causes major probs.

Its good to have you on board as your MEN 1 knowledge will be very useful should it crop up for anyone else.

I'm sure the others will be along soon to welcome you to our merry gang.

Take care

Nelly

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Then and Now

Post by Londanna on Tue Oct 28, 2014 8:00 pm

Thank you Nelly.

Yes, I have been following you all on the site and I am just so sorry that many of you are having awful problems, both post op and in getting a diagnosis in the first place. I think it is shocking.

When my daughter met the geneticist at Guys Hospital recently for her test (I dont go there myself) she asked my daughter how I was now post op.   My daughter replied that I was very much better and the geneticist replied that it was good, so many people suffering from hpth just slowly faded away not realising that they were so unwell as some of the symptoms can be very subtle and some of them, especially the brain fog (which might resemble the early stages of Alzheimers) put people off seeking help because of the fear.

I am keen to help with the passing on of any information if it will help anyone.

Anna

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Re: Then and Now

Post by Brigitte0 on Tue Oct 28, 2014 8:32 pm

Welcome Anna and it's great to see you here on the forum. What a rough time you have had but a good result in the end I think. It's good to know that you feel so great as it's a wonderful thought that I might get to that point soon. Nelly and I had our ops a few days apart and are (impatiently) awaiting the fantastic feeling of being cured. 

I know how you feel about the guilt that you undergo when you realise that you may inadvertently have passed on a hereditary disease to your daughters, since I am currently going through that for a different disease. Due to mismanagement and new understanding of my rare disease, I have only recently had the genetic testing done myself so we have to wait until those results come through before my 2 daughters are tested. However, I know my Mum passed the disease on to me and she feels terribly guilty about it since I ended up with many more problems than she had. However, I have never looked upon it as such a terrible thing to happen to me: it's just one of those things. This disease can be inherited or spontaneously occur at the moment of conception when a faulty copy of a gene mutates. I haven't ever wished I was my sister who didn't inherit the disease because I wouldn't be me! It's a mother's lot to feel responsible perhaps, because I will no doubt feel the same way if my girls end up with faulty genes. 

I'm glad to hear you're so well looked after as hospital care seems to differ vastly in different parts of the country. 

Brigitte x

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Re: Then and Now

Post by Kathi209 on Tue Oct 28, 2014 11:12 pm

Wow what a journey you had. I am thankful that I don't have kidney stones my heart goes out to you. I am so glad you have a great team of doc's to look after you. I totally understand the feeling where your kids are concerned. Hopefully they will test negative. If you do facebook there is a group called Amen  for people who have been dx with MEN, I am not a member and sorry I don't have the link. But a big welcome to you and glad you found us.  Take care Kathi

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Than and Now

Post by Londanna on Wed Oct 29, 2014 6:10 am

Thank you Brigitte and Kathi for you kind replies.   It really helps to be able to discuss freely how one feels about things with people who really understand.   I have great empathy with what you have said in your email as well Brigitte.

As soon as I received my diagnosis I became a member of AMEND Kathi and there are many,many people there who also have hpth, who are also experiencing the horrendous problems in getting treated (96% of MEN 1 patients have htph) and many who are quite young.   As you have already mentioned Brigitte, hospital treatment varies greatly.

Oh well, off for another MRI (Piturity scan) today.   Fingers crossed nothing is found.

I hope you both have a good day.

A

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Re: Then and Now

Post by Amanda Lynne on Wed Oct 29, 2014 12:57 pm

Hi Anna
So lovely to have you on our forum, you've been through some tough times but I'm glad you are feeling so well now and are being closely monitored. 
I have just been diagnosed with FHH after having one PTH adenoma removed, my Endo knows nothing about this genetic disease and now feels quite happy to just say, off you go and don't come back. I have been given no other information about it from her apart from a copy of Genetic Report, not referred to a Geneticist, another Endo who specialises in FHH........nothing, in her last letter she said your ongoing symptoms can't be explained by FHH go and see your Rhumatologist!!!!
So I'm in for a bit of a fight, she can't say definitely if I have another adenoma in there either, I have written quite a strong email to her voicing my concerns but as yet had no reply.
Where do you see your geneticist ? I'm thinking of asking to be refered by GP but don't know where or who and my GP's are pretty useless so I need a recommendation, thanks.
Amanda xxxx

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Genetics

Post by Londanna on Wed Oct 29, 2014 1:57 pm

Hi Amanda Lynne

Your treatment is just awful!   But shockingly common, especially amongst local endos and GPs.   My sister had much the same reply from her GP.   'Never heard of it' he said when she went for a referral letter.

I dont know anything about FHH unfortunately but I notice that you live in the South East so I know for sure there are three genetic counselling (and you should have counselling) centres in London.   One at Guys (London Bridge and excellent), one at St George's Hospital in Tooting, SW London and one in North London (Northwick Park) where I went.   I was referred directly by the hospital but my girls asked our GP to refer them for testing.

If these centres are too far from where you live, you can access the British Genetics organisation direct (bsgm.org.uk) and there is plenty of information there for patients, including all the counselling and testing centres in England.   Your GP should be able to write a referral given the information you have already received.   I dont understand how the Endo came to the conslusion she has without sending you to a geneticist though.

If you do go for testing, then it will most probably take a few weeks for the initial appointment and then the results will take another 8 weeks or so.   The upshot of this will mean that you will be in limbo for a while longer.   How terrible.   And I am so so sorry, no one should have this amount of worry.   My imagination would be running riot, so I hope you are in more control than I would be.

Take care

Anna

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Re: Then and Now

Post by Lucycatnaps on Wed Oct 29, 2014 2:45 pm

Hello Anna and welcome,
You certainly have been on an incredible roller coaster but it is so heartening to hear that you are being closely monitored and not falling between the cracks.  I know very little about MEN1 but I can imagine that it is even more challenging to cope with than PHPT.  I was unaware of my raised calciums for the last 8 years until I had more obvious symptoms in January this year and my PTH was raised as well.    
I am making slow progress in getting a diagnosis but my endo does now say my tests are suggestive of PHPT rather than FHH which was mooted earlier.  This forum has been so supportive and such lovely people both here and over the pond.  Anyway, just wanted to say Hi and Hello and Welcome.
Sue in Lincs

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Re: Then and Now

Post by Amanda Lynne on Wed Oct 29, 2014 3:02 pm

Hi Anna
Thanks for that info, all of those hospital aren't too difficult to get to for me but Northwick Park is nearest.
I have a Genetic diagnosis as I was tested through the hospital I see Endo at and I think it was Southampton where the test was done. So it's more of the counselling side of things I'm in need of. I need answers as to what are the health implications of this disease if any and is it linked to anything my parents suffered with.
All that my Endo was interested in was being the only Endo at her hospital who had correctly diagnosed FHH, I'm sure she's had my Genetic Report framed and put on her office wall, now she wants rid of me.
It's not pleasant to be going through this but there are a lot worse things and life has to go on, I'm trying to run a business and have to get on with it really so not too much time to feel sorry for myself.........even though I'd like to:D
Amanda xxxx

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Re: Then and Now

Post by Hadleigh on Wed Oct 29, 2014 3:46 pm

Sorry to but in, where abouts are you Amanda ? I used to live very near to Northwick Park hospital, had my thyroid and other ops done there and my mum had major cancer surgery there so i know it well.

My family lived near Pinner and Mr Admin's family lived in Wembley, we escaped to Somerset 24 years ago !

Sorry rather a random post geek

Nelly

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Re: Then and Now

Post by Amanda Lynne on Wed Oct 29, 2014 4:02 pm

Hi Nelly 
I live in Northwood near Moor Park golf club.
You probably did the right thing.
Amanda xxxx

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Re: Then and Now

Post by Hadleigh on Wed Oct 29, 2014 4:14 pm

I know it well, one of my cousins lives in Northwood and my sister lives in Chorleywood.

We rarely make the trip up that way but if we do I'll let you know and we could maybe meet up.

Nelly

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Re: Then and Now

Post by Lucycatnaps on Wed Oct 29, 2014 4:43 pm

I lived at Stanmore for a year before moving to Boston, so know it a little around there.
Sue

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Re: Then and Now

Post by Amanda Lynne on Wed Oct 29, 2014 4:47 pm

Hi Nelly that would be lovely, Sue Stanmore isn't too far away.
Amanda xxxx

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Re: Then and Now

Post by Hadleigh on Wed Oct 29, 2014 5:45 pm

I had an uncle in Stanmore many moons ago.

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Re: Then and Now

Post by Tigerlily on Wed Oct 29, 2014 7:10 pm

Welcome, Anna - so glad to hear that you have found us and that your odyssey has had a relatively happy ending.
It's so good for us to hear the stories of people who have "gone through it" and come out the other side - hopefully unscathed.

Your experience of MEN1 will be immensely valuable here, as will any recommendations of hospitals, endo's/surgeons/genetics contacts/ etc.

We are really glad to have you here!

Do take good care of yourself and keep us posted on developments and improvements.

Love from Tigerlily xxxx

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Re: Then and Now

Post by Little Audrey on Thu Oct 30, 2014 6:27 pm

Well, it looks like I'm bringing up the rear here once again.    I can't seem to stay caught up with everything anymore.   Heck, I guess I never really could!  Laughing

Welcome Anna!!   So very glad to have you join us here!    My goodness, yes,  you have been through an awful lot!   I am so very sorry to hear of all of your struggles and the MEN 1 diagnosis.  It sounds like you are handling all like a champ though!     It is very nice of you to share your MEN 1 story with us all.  It will be especially helpful for anyone else with MEN 1 who happens upon the forum. Now that I am post parathyroid surgery, my remaining issues don't pertain to HPT, but I keep posting in case someone else might happen upon the forum with the same issues.

I do believe I have genetically passed something along to my son, and even though it is not nearly as serious as the issues you all are discussing, I can understand how you all feel about the matter.    My mother had terrible trouble with her ears.  Her Eustachian tubes were very narrow, causing a LOT of congestion, hearing issues, and dizziness.   I have the same problem, and my son recently started having the same problem.  His dizziness is so bad, he had to take daily medication just to get through the day.   I simply tip over a lot, crashing into walls and things, but I'm built like a Weeble, so I bounce back up!   Laughing    I don't know if you all are familiar with Weebles or not.  If not, let me know, and I'll post a picture for you.   I guess we as parents feel badly about anything negative we pass along.   It is a part of life though.   I mean, we can't stop reproducing because we are not perfect, right?

Well, I'm going to post now about my latest medication switch and the great conversation I had with my endo's nurse this afternoon.    I'm getting tough in my old age!

Audrey

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