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UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

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UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Dora E on Fri Apr 18, 2014 10:44 am

I'm new here, so this is my intro post as well as my question.  Hello everyone, you seem like a lovely supportive bunch of people :-)

I'm in England, I've recently had a PHPT diagnosis & I'm leaning towards probably going to Tampa to Dr Norman's team.  The endocrinologist said I probably wouldn't be given surgery on the NHS (because my symptoms aren't bad enough), but having read up on PHPT, I don't think it's a good idea to wait to feel worse :-( 

Even though I'm leaning towards the Tampa option, I'm also interested in what's available in this country.  This is partly because I want to have all the facts before I make my own decision, and partly because, when I'm feeling better, I might want to do a bit of campaigning to improve the situation over here for other people. 

There's something Jasmine said on the "old" forum, which I wanted to ask about:

This technique isn't done anywhere in the UK or Europe. My previous surgeon in the UK told me that he had applied to do it for certain complex cases (like mine I guess) but was turned down by whichever body in our Department of Health he had to apply to.

Also there was someone who mentioned a surgeon - was it in Bristol, or somewhere down that way? I can't find the page again now & I might be misremembering - who had expressed impatience about the endocrinologists who take the "wait and see" approach. 

1.  I'd be interested to know names for both these surgeons (unless it was the same person twice!), as a starting point for "medical people in the UK who are interested in improving things".  Maybe in private messages, if for some reason you didn't want to put their names on here.  Or anyone else who you think might be interested in "doing something about it" at a NHS/government level, including yourselves if you have any spare energy :-/

2.  I am wondering:  Jasmine, was it this same surgeon who said no-one in Europe does the MIRP procedure?  I did get the impression that there was no-one in the UK, but I wanted to get that from a definite source & not just guess.  Likewise if anyone else has been told that, I'm curious to know who said it. 

3.  I'm not 100% clear what procedure is currently considered "normal" in the UK, & I'd be interested to hear examples of what other people have experienced over here.  E.g. how many glands taken out, how many glands inspected, what measurements of PTH did they do during or just after the op, how big an incision, was it general anaesthetic, how long the op took & how long you were in hospital afterwards.  (I do realise probably most of you have shared that on the old forum already, in separate threads when you had your ops, so I hope it doesn't seem too cheeky to ask again.  But this would make sure the collected experiences don't get lost if/when the old forum disappears, as well as gathering a summary in one place if that hasn't already been done.  If it has, please point me in the right direction!) 

If people not in the UK want to contribute similar data about their ops as well, maybe it's a good idea to start another thread.  Or if you do post in this thread, at least please make it clear that it's not a UK example. 

Thanks very much in advance for any info!  & wishing all of you the best health possible in the circumstances :-)

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Hadleigh on Fri Apr 18, 2014 2:28 pm

Hi Dora and welcome

That would be me that mentioned the surgeon in Bristol. His name is Mr Justin Morgan and he works at both Spire Bristol (private) and Southmead (nhs) and he does get annoyed with endos who make patients wait and see, if patients have hpth then they need an op and no point in waiting until they are really ill with all the problems that come with it.

Hpth doesn't really cause me any problems, I do have osteopenia and I have a kidney stone, I get very tired and my hair has suffered but I have nowhere near the health problems others suffer with but Mr Morgan said straight away that he would operate, no question.

He also said that many doctors/endos believe if calcium and pth are only mildly raised then there will be no symptoms, wrong, he said patients can have terrible symptoms with only slightly high levels whereas patients with really high levels often feel perfectly ok.

He does do the minimal op but if nothing shows on scans then he will go on a search and destroy mission and check all of them.

I was due to have the scans next week and surgery probably in June/July but it will be further on now as I had to cancel my scan appts. I was told a one night stay in hospital, I don't know if any UK surgeons do it as a day case.

Hope that helps

Nelly
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Jasmine2 on Sat Apr 19, 2014 8:15 am

Hi Dora

Welcome to the forum, so pleased you were able to join us here!  I've only made a quick visit to the forum today Dora, Easter weekend, family staying ....etc etc.... so don't have a lot of time and I want to spend some time replying fully to your post, so this is just to say I haven't forgotten you or ignoring you, but will catch up with you over the next couple of days.

Jasmine x
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Amanda Lynne on Sat Apr 19, 2014 8:32 am

Hi Dora I'm the same as Jasmine I will get back to you with my story soon.
I hope you are prepared for two very long posts from the two of us. Very Happy 
Amanda xxxx
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Tigerlily on Sat Apr 19, 2014 8:18 pm

Hi Dora

Great to have you on the forum! You will get really good information from both Amanda and Jasmine as they have really gone through the mill with this disease.

We others - both diagnosed and not - will also chip in.

Super that you have the energy to be promoting knowledge of this disorder - I'm sure we ill help all we can.

Best of Wishes to you for a peaceful Easter break, Tigerlily.

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Little Audrey on Sun Apr 20, 2014 1:45 am

Hi Dora. Welcome to our wonderful forum! I am sorry I can't help you much with your questions. I am in the US. I am sure the UK forum members will be more than happy to help you out with that.

I am 5 months post-op myself. Recovering VERY slowly, but there is definite improvement with several symptoms now, so, hopefully, I am on my way. I struggled terribly for 3 very long years before I was finally diagnosed by Dr. Norman. As soon as my PTH was first found to be elevated, I began my research. I knew immediately that I had HPT, and I knew that as soon as I was diagnosed, I was going to Tampa for my surgery. My doctors did not agree that I had the disease. Even Dr. Norman dismissed me the first time I contacted him. I kept researching, joining forums, checking out chat rooms, and arguing with my doctors. FINALLY this past November, exactly 3 years after my symptoms had gotten really bad, Dr. Norman diagnosed me. I had a LOT of symptoms. If you are interested in them, you can check out my 5 months post-op post. There were many! A couple resolved immediately after surgery, some have gradually resolved over the past 5 months, and others still remain. Hopefully, I am on my way!

I too am very busy with Easter prep this weekend, so I don't really have time to post more right now. I am looking forward to following your case, and will be more than happy to answer any questions I can.

Again, welcome!

Audrey

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Jasmine2 on Sun Apr 20, 2014 9:27 am

Hi Dora

Right, before I launch into my 'story', the first thing I want to comment on is your endocrinologist's view that you won't get surgery on the NHS because your symptoms aren't that bad.   Grrrrrrr.......!  Whilst I am really pleased for you if you're not struggling too badly with horrible and debilitating symptoms, having been diagnosed you really want to keep it that way and get your surgery BEFORE this wretched disease wrecks your body like it has for so many of us!  So I would be saying to the endo, and the surgeon when you get a referral, that you have no desire to get to the stage where you can't function due to brain fog, memory loss, extreme tiredness and fatigue, nausea and dizziness, not sleeping, excessive thirst and urination, excruciating abdominal spasms and acid reflux, bone pain, muscle and joint pain and inflammation, disengaging with life in general because you either feel too ill or just can't be bothered (we call this HPT 'can't be ar*ed syndrome) and your hair falling out!  These are the symptoms I have struggled with for around 13 years (and I've probably forgotten some ....) but others have kidney stones, osteopenia or osteoporosis as well, plus the longer your body has to deal with high levels of calcium you are more susceptible to cardiovascular disease, stroke etc (I already have mild coronary heart disease!).  My point to the medics would be that it would be less of a cost to the NHS to cure you with surgery BEFORE you start draining resources by being so poorly! 

OK, to summarise my story, I first had raised calcium and PTH back in 2001, when it was first suggested that I might have PHPT, but this was never followed up and subsequently I spent the next 12 years backwards and forwards to my GP with a variety of ever increasing debilitating symptoms, which we now know were due to PHPT but were dismissed as menopause, ageing or hypochondria.  It took a fit of the screaming ab dabs and sobbing that I was at the end of tether in the doctor's around a year ago that made him look at it all again, test for everything going and hey oh, high calcium and PTH.  I did some research on it, including experienced endocrinologists, found that there was a four month wait in my area for an NHS referral and decided I'd waited long enough, so asked my GP to refer me to Dr Miles Levy privately, who is based in Leicester. He agreed with the GP diagnosis of PHPT and, as he is one of the forward thinking endos who is sympathetic to an early surgical referral, referred me to a surgeon of my choice.  Again, I had researched endocrine surgeons and Andrew McLaren was on the list of 'experienced' PT surgeons that Simon had compiled on the old forum, so I went to him, again privately, but under the Choose and Book scheme you can ask your GP to refer you to a surgeon of your choice anywhere if you're happy to go out of area (which I'm guessing you would as you're considering Tampa?). My ultrasound was negative but Sestamibi showed a hotspot.  I had my first PT surgery last August here in the UK.  I should just say that mine was a little more complex due to a previous subtotal thyroidectomy which produced a lot of scar tissue and which also damaged one of my laryngeal nerves causing one side of my vocal chords to be paralysed, although my voice recovered fully.  So, the first exploratory parathyroidectomy was unsuccessful and he removed what turned out to be lymph nodes and said that he didn't find any other parathyroid tissue but had had to go very carefully to avoid damaging my remaining laryngeal nerve.  On this basis he refused to re-operate because of what he called an unacceptably high risk of catastrophic complications as he felt the adenoma was too close to my only functional laryngeal nerve.  He also said that he had consulted colleagues who also wouldn't attempt it.  I couldn't contemplate life with this disease so my only option was Dr Norman in Tampa.

His technique, which is the one that isn't done here, is to use a radio guided probe to locate the radioactive PT glands. It meant for me that the surgery could be done safely without having to dissect through all the scar tissue to find the tumour, which he did in four minutes, avoiding the danger of nerve damage.  Dr Norman usually locates all four glands to healthcheck them and remove diseased glands, to guarantee a cure, but he made it clear to me from the beginning that he would be unable to in my case due to my two previous neck surgeries where the glands could have been displaced or unintentionally removed.  Consequently, it appears I may have another adenoma lurking as since then my calcium and PTH have remained high and I am currently going through the whole diagnostic process again - but I'll get there!

I don't think there's a whole lot of consistency in the UK, Dora, regarding endocrinologists and surgeons who are sympathetic to an early surgical intervention, or who does minimally invasive as opposed to searching out all four glands, I think it's based on their individual views and opinions, which is very demoralising for so many people here, especially those for whom the NHS is their only option.  I think you just have to know what questions to ask and have the courage to demand second opinions until you find the right medic for you, and who you feel confident with.  Which is why it's so great to have this forum for the sharing of information and experiences!  For me personally, if I do have to have yet more surgery I will do my best to go back to Dr Norman, but that may be my only option anyway having already been written off once by surgeons here in the UK, but having paid for it all once it will be quite a strain on the finances to have to do it again.  Fortunately we have BUPA here in the UK for treatment.  Although I can't make any personal recommendations re endos and surgeons here in the UK (apart from Dr Levy who I really like) I have heard some very positive feedback about surgeons Robert Hardy (based in Liverpool), and Fausto Palazzo (Hammersmith, London).

Hope this all helps in your process Dora, good luck with it all and please do keep us posted on your progress.

Jasmine x
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Jasmine2 on Sun Apr 20, 2014 9:47 am

Sorry Dora, don't think I quite answered all your questions - just to confirm re my comment in a previous post, it was Andrew McLaren who told me the MIRP isn't done anywhere in Europe, and that he'd applied and been turned down by the Radiation Protection agency (not sure if that's the exact title....).  I asked him the question when I was exploring my options re Tampa, having been refused a re-operation by him here.

With my UK surgery, it was around one and a half hours and I had an overnight stay.  In Tampa Dr Norman did my surgery in 13 minutes from start to finish, and I was back at our hotel two hours later.

Jasmine x
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Tigerlily on Sun Apr 20, 2014 11:32 am

Thanks, Jasmine, for posting this to Dora, even though you are not feeling great at the moment.

I'm sure all the information will be very useful to all new members who are now able to access and post on the forum (me included!).

Love from Tigerlily xx

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by GRR on Sat May 17, 2014 12:26 pm

Hi Dora,

I'm in London and have had surgery in December 2012. One adenoma was removed at that time. Long recovery but getting better. 
The surgery was done at a main London hospital and the surgeon is highly experienced. My scar has disappeared and is tiny. It was a minimally invasive type of surgery, although I cannot confirm if it's MIRP or not. That's a question for the surgeon, I guess...The only thing I was told if that they used a very specific scan during the surgery and because they borrow it from another department, they can only operate once in 6 weeks.

He also treats privately so if London is an option for you, I can give you his contact details. I grabbed his business card just in case...

Anyway, as somebody explained before, on the NHS you can choose and book any consultant, even if it's outside your area. 

Any questions, please ask.

Best regards,
GRR

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by lozza on Sat May 17, 2014 6:01 pm

Hi Dora,
Welcome, this is a really good topic , as we need to build up a database. 

In uk and rest of the world,i do wonder what surgeons are available in Europe ? might do some searching.

I am not at stage of surgeons, but hope to be soon and this topic will certainly be good for me to look at later.

regards

Lozza Very Happy

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Tigerlily on Sat May 17, 2014 8:02 pm

Hi GRR

Could you let us all know who this wonderful surgeon-guy was in case we need to go and see him?

Thanks, Tigerlily.

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by GRR on Sat May 17, 2014 8:52 pm

Hi Tigerlily,

Please have a look at the link.
http://www.uclh.nhs.uk/OurServices/Consultants/Pages/MrTomRKurzawinski.aspx

He was not even bothered by the fact that my seismibi scan was negative, which is a good sign. 

Best regards,
GRR

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Jasmine2 on Sat May 17, 2014 8:53 pm

Thanks GRR, and welcome to the forum by the way!

Jasmine x
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Tigerlily on Sun May 18, 2014 11:22 am

Thanks for the link, GRR - really useful.

Tigerlily xx

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by bridggar on Thu May 22, 2014 3:28 pm

For info - I had a parathyroidectomy performed at PineHill hospital in Hitchin, Herts in February this year by Mr Mochloulis after a referal by endo Felicity Kaplan. It was minimally invasive and he would appear to be the key surgeon for Hertfordshire & Bedfordshire specialising in this. Whilst the surgery was a success, I'm still on the recovery journey. Whilst I was fortunate not to have many of the symptoms suffered by many on this forum, I was getting increasinly "foggy" and bone ache was causing me to wake at night.
3 months post op, I still have bone pain although bloods show calcium levels to now be normal. I've been taking vit D suppliments when I find confusion setting in, I guess I just need to wait for my body to adjust. FWIW I'm 41 and the surgeon estimated the anenoma had been there for at least 3 years given the size of it when he removed it.

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Jasmine2 on Thu May 22, 2014 4:00 pm

Hi Briddgar

Welcome to the forum, nice to hear from you, and with a positive experience, just what we like to hear, gives us all hope.  So pleased that your calcium level has returned to normal, it must be such a relief.    Although you feel you didn't experience as many symptoms as some, it was still making you miserable I guess and hopefully when your body has adjusted, as you say, you might find that you feel SO much better than you did before!  Sometimes this horrible disease just creeps up on you over the years and you don't realise how unwell you've become because it just feels 'normal' for you, and people who don't think they've had much in the way of symptoms realise that actually they did but just didn't realise it until they start to feel so much better.  I really hope that happens for you Briddgar and that very soon you will be feeling brilliant and fully recovered.  Very often, post op bone pain is due to the bones remineralising after your calcium levels have settled so hopefully it will ease up very soon.  Did your Vit D drop very low before surgery and the reason why you're continuing to take it, and have you had your D levels checked post op as well as your calcium and PTH?  Sometimes Vit D supplements can cause continuing aches and pains so it might be worth checking to see if you actually need it.

Thanks also for letting us know who your endo and surgeon were and how you rated them; I think Mr and Mrs Admin are interested in compiling a database of endocrinologists and surgeons based on recommendation and locality so that's very helpful.

Do let us know how things go.

Jasmine x
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by bridggar on Thu May 22, 2014 4:25 pm

Vit D dropped post surgery so I was advised by Dr Kaplan to take suppliments. I'm in a curious position whereby private healthcare covered the diagnosis & treatment, but I'm now back in the hands of the NHS. (So rather than having bloods taken within 10 minutes of consultation with results known the next day, I have to wait a week for blood test then 5 working days for results) I spoke to another locum GP today who will fax the blood results to my endo who should hopefully be able to advise - she did say previously that vit D needs to be monitored as it can complicate things.

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Jasmine2 on Thu May 22, 2014 4:50 pm

Yes the science can be quite complicated and confusing, especially as your D dropped after surgery and your calcium also came down.  Normally Vit D drops when calcium goes high to try and prevent more calcium being absorbed, and when you supplement Vit D it can push the calcium levels up.  Be interesting to see what your full results are when you get them. Have you requested copies from your GP?  

Hope all continues to go well for you, keep us posted Briddgar.

Jasmine x
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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by GRR on Thu May 22, 2014 6:09 pm

@bridggar wrote:
3 months post op, I still have bone pain although bloods show calcium levels to now be normal. I've been taking vit D suppliments when I find confusion setting in, I guess I just need to wait for my body to adjust. FWIW I'm 41 and the surgeon estimated the anenoma had been there for at least 3 years given the size of it when he removed it.

Hi bridggar,

I was also 41 when I had the surgery and more than a year after the procedure, I still have extreme bone pain from time to time. Both my calcium and PTH are absolutely normal.
I also take vit D as they told me I need to take it to fix calcium in bones. Mine is rocket high and I still need to continue. My vitamin D didn't drop after surgery but, I was told they wanted it at around 90 to assure my bones will recover (I have osteoporosis). 
Keep checking your phosphate levels as well. Mine dropped a few hours after surgery and it was a horrible experience as the doctor in the ward just thought I was having a panic attack or something like that! It makes your whole body feel numb, like having pins and needles everywhere at the same time (including my face). I thought I was getting paralysed or something like that. 

I'm surprised you've been told that it could be 3 years since you have it by looking at the size. I was told they cannot tell by size and actually, my adenoma was tiny but I could remember the symptoms for more than 10 years. 

Best of luck with your recovery! Mine has been extremely slow at the beginning but it got better with time. 
GRR

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Little Audrey on Fri May 23, 2014 12:30 pm

Welcome Bridggar! Great to have you aboard! Don't worry about your symptoms hanging on. It would seem that once this disease takes hold of a body, it just doesn't want to let go. Eventually, the symptoms should resolve. This disease takes more patience than I ever knew I had. Actually, many times I've lost patience, but somehow I keep going, like everyone else.

Yes, my recovery too has been VERY gradual, and at 6 months post-op I still have little twinges of the bone pain in my shins every once in a while, but most of the time now I have none. My plantar fasciitis is also VERY gradually resolving, but the neck stiffness and pain is relentless! I still have slight headaches from time to time, but I am wondering if that might be from the very painful neck muscles. My upper arms and thighs are still stiff and sore. I still have some stiffness and pain in the fingers of my left hand. I still have some intermittent wrist and thumb pain. Several other symptoms have resolved, but these few linger.

GRR, I'm so sorry you're still struggling with your symptoms post-op too. I do hope things continue to improve for you and at a more rapid rate. I was happy you posted about your vitamin D level. I have been thinking lately that my own level should be much higher, and I have started taking supplements to try to raise it. I stopped taking it before my surgery because of the elevated calcium, but I feel safe taking it now. My most recent level was 40. The reason I started thinking about this is because several months ago I started twitching nonstop all over my body. My eyelids have been twitching off and on for the past 3-1/2 years. My right eyelid just recently stopped after twitching for 7 months straight! I thought I was going to go out of my mind before it stopped. Even though this is not painful, it is very annoying. As I mentioned, I am now twitching all over my body. The twitches all over my face, in my upper arms, thighs, around my knees, and in my stomach are now very infrequent. They might twitch a couple of times a day, but they're not constant. The twitches in my lower legs never stop. This has been going on for months now. About a month ago my muscles started feeling extremely weak. It has been very hard to climb steps, walk, or even type on my computer. At times I'm so weak, I get nauseous. I have always been a very muscular person. I have worked all my life to build and strengthen my muscles. This is really hard to accept! A couple of weeks ago I was outside in the sun for several hours planting my flowers. I was feeling so weak and shaky, I was not enjoying myself AT ALL! I felt like I was going to collapse. A couple of hours after I came back into the house, the weakness totally went away! And I had been feeling this way for weeks straight before this happened! My strength came back completely! That was when I started wondering about the vitamin D. I bought some vitamin D supplements and started taking them at that time. The weakness would come and go, but never got as bad as it had been before I started the vitamin D. Last week the same thing happened after being out in the sun. I am really hoping this is the reason for the weakness and the twitching, and it is nothing more serious. It is very frightening. I have not discussed this yet with any of my doctors. My PA is supposed to call and check on me soon. When she does, I will run this by her. I do think my vitamin D needs to be higher than 40. My calcium is now at 9.9, so I know this is not being caused from low calcium.

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by GRR on Fri May 23, 2014 1:12 pm

Hi Audrey,

At 6 months post-op I was also struggling with the muscle twitches but they are now gone. I only have a very faded version on my arms. But, I did have couple of horrible stiffness "attacks" and couldn't move my neck and arm. After those attacks, the twitches ceased. Very strange...
I know what you mean about the eye twitching as I had it during the time I was ill. It actually stopped after surgery. However, if you have not checked your thyroid, request some tests as those twitches are also common in people with thyroid problems.

Just in case...regarding vitamin D, I'm in UK and was talking about the units we use here. Please check if it's the same for you. I was told to aim to be around 90 nmol/L (25-120 normal range). Being just inside the range is not enough with this illness, it needs to be normal high. 

You are nearly there! In a few months times you will be feeling better. I do remember going to the doctors at around 6 months post-op complaining of all the pain, twitches and numbness and they were all looking at me as if I was crazy because "the blood results say you are cured". Nobody knows what to expect! I'm glad at least we can compare notes as it seems we are having a very similar recovery. 

I hope you start feeling better soon!

GRR

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Little Audrey on Sat May 24, 2014 1:51 am

Well, GRR, you don't know what a relief it is to hear you too suffered from lots of twitches! Thank you so much for your comments! I have myself believing I have all sorts of serious diseases!! My PA wanted me to make an appointment with a neurologist because of the twitches. I just made the appointment. He can't see me til August 14th! I'm hoping this will all be gone by then, and I can just cancel the appointment! The twitches are very frightening, but the extreme muscle weakness is what is really scaring me. There is definitely something wrong with my muscles and nerves, and I know calcium, vitamin D, and thyroid issues can affect the muscles and nerves, and since I am dealing with all 3, I'm praying it is they that are causing this!

I too suffer from lots of painful stiffness in my upper arms, thighs, and fingers of my left hand. My upper arms have been very stiff and painful for 3-1/2 years now. This never stops. I will be VERY happy to get rid of all the muscle stiffness!

Here in the US, normal range for vitamin D is 30-100. My latest level was 40. So I'm thinking it might be a good idea to raise that some. As soon as I start swimming for the summer, that will be a big help, but I'm still taking the supplements until I can get it up higher.

Yes, once the PTH and calcium go down, we expect to feel well again, but that just doesn't always happen. I knew when I read on Dr. Norman's site that some people are like tortoises when they recover and some are like hares, that I would be a tortoise. That's just the way things go for me. This is not what I planned for my recovery, but I guess I can deal with it, as long as I know there is a light at the end of the tunnel.

I am so happy you are recovering, even though it is taking much longer than you hoped, and you are finally feeling better!!  cheers  Always love to hear the success stories!!

Audrey

Little Audrey

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

Post by Dora E on Sat May 24, 2014 7:02 am

Thanks to everyone who's contributed to this thread!  I have been reading it all :-)

Dora E

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Re: UK surgeons & procedures etc, inc q for Jasmine & qs for everyone in the UK

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