Hyperparathyroid Forum
By logging-in to this Forum, you are agreeing to the Hyperparathyroid Forum Terms and conditions of Use http://hyperparathyroid.forumotion.co.uk/f5-hyperparathyroid-forum-terms-and-conditions-of-use

New member

View previous topic View next topic Go down

New member

Post by Kath15 on Thu Oct 06, 2016 9:38 am

Hi everyone. I have just been diagnosed with hyperparathyroidism and have been referred to an endocrinologist. I live in West Sussex. Does anyone else live around here and know of a good specialist?
I have been ill for many years. I was initially diagnosed with ME/CFS and then 7 years ago I was found to have a rare brain condition (Chiari Malformation) and I had to have brain surgery. My health has been up and down since then and last year I had another even rarer brain condition (unconnected!) and I was in and out of hospital. I've been managing to continue working part time as a lecturer at Brighton University but in the last year or so I have just got more and more unwell. I was told it was an ME relapse and Fibromyalgia until I finally had some blood tests and I have high calcium and high parathyroid hormone.
I have now gone off sick and feel very unwell. I am extremely fatigued, have constant headaches, ache all over, I'm always thirsty etc........
It's wonderful to find this forum and to know that there are people out there.
I hope everyone is having a good day!
Kath

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Hadleigh on Thu Oct 06, 2016 7:10 pm

Hi Kath and welcome

Bad luck on the diagnosis but good you now know what is wrong and you can be fixed. I'm going to say what I always say to new members, have you had your thyroid function tested ? ME/CFS and Fibro are all commonly diagnosed when in fact its a thyroid problem, usually underactive, many of us here do have both conditions so worth considering alongside the pth issues.

You have had a lot to deal with over the years and I'm sure hpth is just about the last straw. Do you have your blood results ? we can perhaps help interpret them for you. Good idea to always ask for printouts so you can keep track of results, doctors are sometimes not the best at doing it !

I'm not sure we have anyone from your part of the country, we are a bit short of active members right now, everyone is cured and off doing exciting things, but I'm always around.

You do need to see an experienced Endo, one who knows about hpth, many don't ! and if/when it comes to surgery a very clever parathyroid surgeon is required, one who has done a fair number of ops so you have the best chance of success. We do have a list in the reference section of some surgeons, not sure if any are from your area.

Your Endo will need to find out if you have primary hpth which is due to a benign adenoma or if its secondary caused by another health problem, commonly kidney disease but I'm wondering if your past history may have had an impact on your pth glands. You will need some scans, ultrasound and a sestamibi scan to locate any adenomas, they don't always show up on both but if its there then one of them should catch something.

Hopefully you won't have to wait long for your Endo appt but if you are really unwell and struggling then do get back to your GP because if your calcium goes to high it may mean you need to be admitted for treatment to get the level down.

Anyways have a read round the forum, lots of info in the reference bit and umpteen posts from members covering their experiences of hpth. If you have any questions I will do my best to answer and hopefully one of the others will be along to help out as well.

Take care and do keep us posted on your progress.

Nelly

avatar
Hadleigh

Posts : 795
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: New member

Post by Kath15 on Fri Oct 07, 2016 9:56 am

Hi Nelly,
Thank you so much for your kind and detailed reply. It is great to know there is support out there.
I have had my thyroid checked in the past and it was always ok. Maybe I should have it checked again though?
My GP gave me a print out of my results without me asking which is good! When I've looked online there seem to be two ways of measuring PHT. The one I have says the normal range is 1.20 - 7.20pmol/l. My result is 13.2 pmol/l. My calcium was 2.62. My GP said it is probably not reliable as my Vitamin D was low which can mask high calcium. This is all completely beyond me!
I will have a look round the forum and see if I can find any info for my area. I would be willing to travel though if I found the right person. I had such an awful experience when I was ill last year. My local hospital was dreadful and it took three months to diagnose what was wrong. And that was only because I insisted on being referred to a specialist neurologist.
I feel a bit anxious about trying to find an appropriate endo. I'm seeing my GP next week so I will try to find out who I have been referred to.
Have you had the surgery? How did it go and are you well now?
Thanks for your help.
Kath

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Hadleigh on Fri Oct 07, 2016 11:44 am

It would be worth having your thyroid checked again, unfortunately GP's are not good with thyroid issues, in their eyes as long as results are within range you are deemed "normal" when in fact there is no such thing as "normal". Very common for people to have "normal" results but actually have raging thyroid disease, the diagnosis and treatment of thyroid diseases is generally appalling but there is a lot of research going on in the background in an attempt to educate doctors, it's a hard slog !

Being vitd deficient is part of having hpth, again doctors don't know this and commonly prescribe supplements in very high doses, wrong, this will just increase the calcium more !

Have you had a dexa scan to check bone density ? Osteopaenia/ Osteoporosis is another delight of having hpth but once that is treated then bones can improve.

Your pth is quite high but luckily calcium although high is not to drastic, over 3 is getting into the dodgy area. It's the high calcium that makes you feel ill, if you have a high calcium diet you can try to reduce it slightly, nothing proven but I found it helped a bit.

I had surgery about 3 years ago, it wasn't an easy op as I had previously had thyroid surgery but my surgeon was very good and managed to do an excellent job, this was in Bristol. Some people feel instantly better, I didn't and I would say it took about a year for everything to settle down, calcium was a bit up and down for a while and I still get it checked as often as possible just in case !

It's difficult choosing an Endo, once you know who you have been referred to see what you can find out on the internet or better still call his/ her secretary and ask if they have experience with hpth but you may be lucky and hit on a good one first time. I went to see 2, one NHS and 1 private, further tests on the NHS were going to take to long and I wasn't keen on either the hospital or their surgeon so I opted for private, she was ok but still a challenge ! Once she admitted defeat and accepted I was not going to go away she referred me to their surgeon but under the NHS, he was really nice and very experienced so I would recommend him if you fancy trips to Bristol, not my favourite of places !

A few of our members have seen a very experienced surgeon in London, Fausto Palazzo, but you need to get the scans done and have a proper diagnosis of primary hpth before jumping that far ahead. If it turns out to be secondary hpth then it's a different story.

In case I forget to mention it there is a drug called Cinacalcet which can be used for people who either can't have or don't want surgery, its very good at controlling levels, my husband is taking it as he has hpth probably secondary due to his kidney failure. This would need an Endo to prescribe it providing they have heard of it !!

So there we go, if you do get your thyroid checked then we are happy to read the results for you, we have many many years of battling with thyroid stuff so we can offer support on that too Smile Should you want to do any blood tests yourself I recommend Medichecks, they do lots of finger prick home tests kits which you send back to their lab, the service is quick and very good.

I'm off to Tesco now, oh joy.

Take care and I hope you have a reasonable day, here to chat anytime.

Nelly x
avatar
Hadleigh

Posts : 795
Join date : 2014-03-29
Location : Somerset, UK

View user profile

Back to top Go down

Re: New member

Post by Kath15 on Fri Oct 07, 2016 4:57 pm

Hi Nelly,
I hope you emjoyed Tesco!
I haven't had any scans or tests yet as I only got the blood test results on Monday. I have just discovered that my daughter's flat mate's dad is an endocronologist so she's going to ask if if he can recommend anyone!
I have seen the drug you mention discussed on various websites so I'll keep that in mind when I see someone.
I'm sorry to hear that your husband has kidney failure. What a worry.
Glad to her the surgery went well for you.
I looked around the forum today and watched the video that one of the links went to. It explained hpth really clearly which was great.
I hope you have a good weekend.
BW,
Kath

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Tigerlily on Wed Nov 09, 2016 12:26 pm

Hi Kath
I am an old forum member who has been away for a while dealing with other problems (!!) but I have just noticed your post.
Before I add my thoughts - are you any further forward on your "PTH Journey" since your last post?
Do let us know.
Best of Wishes, Tigerlily.

Tigerlily

Posts : 1212
Join date : 2014-04-04
Age : 64
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New member

Post by Kath15 on Wed Nov 09, 2016 2:00 pm

Hi Tigerlilly,
Thanks for your post. I am seeing an endocrinologist at Brighton hospital next Thursday so things have moved forwards a bit. I have had more blood tests today so that I have some up to date ones to take with me to the appointment.
What is your situation?
Best wishes,
Kath

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Tigerlily on Wed Nov 09, 2016 2:40 pm

Hi Kath
I've just posted a new thread Update from Tigerlily on my situation.
Funnily enough we used to live in Worthing, but that was before my PTH episode and so I can't help with recommendations locally.
I would say that with your background brain condition/previous ops you would need to be very careful into whose hands you commend yourself for PTH surgery, if that's the way things end up heading, so to speak.
Your calcium is high-normal and so your PTH should be low or undetectable if the system is working properly. Vit D deficiency often rides alongside a PTH problem, but it is not usually the cause of it. Not many medical people know this! I read some recent research in which 76% of the patients with clearly and correctly diagnosed primary hyperparathyroidism had a Vit D deficiency prior to surgery.
Let us know your blood test results from today when you have them and which endo you will be seeing.
Nelly is right that Mr Fausto Palazzo is an extremely experienced PTH surgeon, especially in dealing with delicate ops after previous surgery. He is the one I would elect to go to in your position. In fact, in your position I would probably invest £250 in an initial private appointment with him (PM me - I can give you his details) if things don't go well with your endo. I did this and then he transferred me over to his NHS list for all the tests and the surgery.

But you never know, you might just get a good endo who knows all about PTH and can advise you well - just don't bank on it!

Let us now how it goes - don't stay out there alone and feeling poorly - we have been there, and we are anxious to give you all the help we can to achieve a good outcome to what can be a really difficult set of hoops to go through.

Best of Wishes, Tigerlily.

Tigerlily

Posts : 1212
Join date : 2014-04-04
Age : 64
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New member

Post by Kath15 on Wed Nov 09, 2016 3:38 pm

Hi Tigerlilly,
That is really useful advice. I'll see how my appointment goes next week and see if I think a private appointment with FP seems a good way to go. I'm hoping to get my blood test results tomorrow so I'll post them on here.
I feel very anxious about the whole thing. I've been ill for so many years and missed out on so much. This diagnosis does give me hope but I do need a good surgeon!
I'll read your new post now.
Best wishes,
Kath

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Tigerlily on Wed Nov 09, 2016 5:29 pm

Hi Kath
Don't feel too anxious about any PTH surgery. FP told me that in expert hands (that's the clincher) it is a simple operation with only light anaesthesia. It was just like that for me in his expert hands. In early morning, surgery around 11am, recovery that afternoon, no sleep at all that night (why are hospital wards so noisy!), and collected by my husband the following lunchtime. You do need someone to collect you, though, as you are not 100% OK on your own so soon afterwards.

The main worry is getting the diagnosis in the first place, after that - life beckons again!

I know just what you mean about being unwell for so long and missing out on great chunks of your life. I am convinced that I had had the PTH problem for at least 10 years before the surgery. I had 3 enlarged and abnormal glands removed by FP. It has taken 12-18 months to get my Ca and PTH levels back to normal, but it has happened, and I feel 200% better on the PTH front.

As I understand it, primary PTH hyperplasia of one or more glands often does not show up on scans - mine didn't, except for a "something" (adenoma? hyperplastic gland?) that showed up really well on ultrasound (but not on the sestamibi scan) as it had attached itself to a lymph node. FP was expecting to remove this 2cm something, but I insisted he checked all the other glands if he could at the same time, and the two on the other side of my neck were also enlarged and abnormal. It meant I had to have a full exploration with a larger incision, but 2 years on the scar is almost invisible. And he is such a nice caring man. Professionally, he sits (or has sat) on the committee that sets the guidelines for surgery, which is quite significant, in my view.

Good luck next week, and let us know your current results when you have them.

Best of Wishes, Tigerlily.

Tigerlily

Posts : 1212
Join date : 2014-04-04
Age : 64
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New member

Post by Kath15 on Thu Nov 10, 2016 4:58 pm

I just got my blood test results. Pth 9.7 (was 13.2 last time) and calcium 2.63.
I've been feeling really unwell today and have a bad pain in the left of my mid back. I hope it isn't kidneys!
Kath

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Tigerlily on Thu Nov 10, 2016 5:36 pm

Hi Kath
If it's primary HPT we get all sorts of bone/muscle aches and pains with it, so your pain probably goes with the territory.
The PTH does tend to be erratic as well, as yours is (and mine was) and your calcium is still high normal. If you did not have a PTH problem, the PTH level associated with that calcium level would be at the very low end of the range, as, in health, Ca and PTH generally live in an inverse relationship.
Let's hope your endo at Brighton knows about thyroid issues and parathyroid ones, and does not get distracted by your low Vit D level. As I said before, it's common with primary hyperparathyroidism to have a low Vit D level.
I still think Mr Fausto Palazzo is your man, because you need a precise diagnosis and an expert surgeon given your previous medical history. Send me a Private Message on here if you want his details. I can also send you the chart of my Ca and PTH levels, so that you can see that erratic Ca and PTH levels often occur with pHPT. A good run of blood test results (perhaps not quite as long as mine, as it took me 2 years to get a diagnosis and surgery!) is a good idea, so that you can see the "climate" and not just the "weather", is what I was told by Dr Jim Norman at the Norman PTH Centre in Tampa, Florida, when I asked his opinion of my case.
Let us know how it goes with the endo, Kath, and hang on in there as best you can until then. There is light at the end of the tunnel, but the tunnel has been quite long and a bit murky for most of us, but we got out of it in the end with a lot of help from each other on this forum!
Ask any more questions that you need to - nothing is a silly question here.
Best of Wishes, Maureen

Tigerlily

Posts : 1212
Join date : 2014-04-04
Age : 64
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New member

Post by Kath15 on Thu Nov 10, 2016 6:09 pm

Hi Maureen,
Thank you for all your replies and support. I'll see how I get on next week and let you know if I think I need to go elsewhere.
Best wishes,
Kath

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Tigerlily on Thu Nov 10, 2016 6:21 pm

Kath - you'll have guessed that Tigerlily and Maureen are one and the same - may have got the body fixed but the brain is still a bit dicky!!
Best of Wishes
T-L Maureen.

Tigerlily

Posts : 1212
Join date : 2014-04-04
Age : 64
Location : Sudbury, Suffolk

View user profile

Back to top Go down

Re: New member

Post by Kath15 on Thu Nov 10, 2016 6:29 pm

Very Happy

Kath15

Posts : 8
Join date : 2016-10-06

View user profile

Back to top Go down

Re: New member

Post by Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum