Hi Everyone

Just to say Hi to everyone great to have found a forum for Hyperparathyroid - now diagnosed by GP as having this after many months of bloods etc, I was also taken off bendofluazide as they said this may be causing high calcium levels, however the first blood test showed it going down and then two months later back up to where it was before.

 I have had a ultrasound which shows Gall stones and enlarged spleen plus I am also Hypothyroid and take 125g of Levothyroxine. My GP says he will monitor me but no mention of an op, unless I have another drastic symptom !

 I originally went because I feel tired, queasy was either having to run to loo for bowels or constipated, skin is dry and very spotty like acne almost. Pains in sides and all joints, make me feel and walk like I was 30 years older. As for sleep that is also bad - sounds like a recipe for disaster lol. This week have had a 24 blood pressure monitor, which I now have to see my GP again as she says it was 175, weight is terrible and just goes up and up. so you can imagine after finding your lovely new site and info available I am keen to see if it can be sorted.

I came across a clinic in Florida that gets mentioned quite a lot on the internet, so I am keen to know if there is anywhere here in UK that have really good info on this condition and what can be done or indeed a person to see. I am not keen on the wait and see how you go bit really as GP mentions, as I wish to have a normal daily life again, so if I have to pay then I will have to start saving and go for it I am of course very interested in any else thoughts or what you have done to help get things sorted out.

Hi and welcome tiniegil

Have you had a pth blood test done ? It sounds like you have many symptoms going on so you are right in not wanting to tick along as you are, naughty GP !

We have a few members who have made the journey to Tampa for surgery but there are also some great docs here in the UK.

Jasmine is currently on the countdown to see Fausto Pallazo in London, I saw an Endo at Spire Bristol and now am seeing a really nice surgeon in Bristol, he hates the wait and see approach !  others will jump in with some more names for you to mull over.

So I would suggest you get to see an Endo asap, you may need a GP referral but some will see patients without but you do need to do your research to find one who deals with parathyroid disease as many don't, the same goes for surgeons, you need one that does regular para surgery so they have the experience.

You have landed in the right place for advice and support, we have a great bunch of people here   Have you looked through our ref section ? we are still adding useful websites so do let us know if you come across anything we can add or shout if we are missing something that you think would be useful.

Catch up later

Nelly

Hello Tiniegil and welcome,
I too am at the beginning of being diagnosed, with raised calciums and
one high PTH.  I am currently waiting to see an endo for an initial consultation in May.  This group is fantastic and very supportive, especially when some days I feel really low.  For me the thirst is worst and no amount of fluids seems to quench it, in one end and out the other.  I just feel I can't relax either, all knotted up but tired out as well.  Anyway, just wanted to say Hi.
Sue

Hi tiniegil
Glad to have you here with us on the forum - but also sorry you have to be here, if you see what I mean.
Just wanted to welcome you and direct you to the BMJ Best Practice site in the reference section (just click the link, it just worked OK for me) for a lot of useful info on hyperparathyroidism.
I think the site is connected with the work of Fausto Palazzo, an endocrine surgeon at the Hammersmith Hospital. Our forum member Jasmine has just contacted him for advice so keep an eye on her posts following her surgery at the Tampa Clinic (www. parathyroid.com will give you more information abou7t the work of Dr Jim Norman there).
Let us know if there's anything else we can help with, if you feel low, or need to have a rant about something - it's all OK here (as long as it's decent!).
No doubt we'll "talk" again soon - Love from Tigerlily.

Thank you both for your warm welcome and tips I will be straight on it a bit later, Lucycatnaps - did your GP do a referral immediately for you? I was also wondering in this age of cut backs, as I saw somewhere that if under 50 your more likely to get the op as I am certainly over by 4 years lol. Or were my eyes deceiving me?

Hi again Tiniegil,
I had worked myself up into a real state from October until January, feeling awful and panicky whilst waiting for test results.  I went back to my GP mid January and basically broke down, he redid all my bloods and the calcium came back high.  I had only had them done last November as am under the Rheumatology dept but no idea what they were as hospital and GP practise seem unable to communicate with each other, just that they were fine.  He repeated the calcium and asked for PTH as well which came back high and then referred me at the end of January but it has been a long wait, my appointment is not until May 13th.  I am using the waiting time to get more blood calciums and PTH done to see if it remains high as I will not be fobbed off with the watch and wait approach.  I am also hypothyroid for the last 10 years and feel it is undertreated.  In fact I went this morning to GP to get a final set done ready for the big day, he has been supportive and is convinced I have HPTH, he has given me the blood forms and told me to wait until week before appt so they are an up to date result.  He is redoing TSH as well , I have a feeling my thyroid went a little manic in January too as had lots of palpitations, I take 75/100mcg alt days at the mo and that has been a fight to get that as they go by TSH results rather than how you feel.  My TSH is now running around the 1 mark and I feel better than when its up in the 2 or 3's. And yes just found out I have a gallstone too
Hugs Sue
PS Forgot to add I am 58

Hi Tiniegil,

welcome to the group, i am 41 and they are not in a rush to do surgery- just the wait and see approach. 

i am not sure how much age comes in to this,

what were your PTH levels ?

keep us posted.

best wishes

Lozza 

Hi Tiniegil

Welcome to our merry band!  But as Tigerlily said, sorry you have to be here at all!  You're in good company though and I'm glad you found us; you'll always find a listening ear and plenty of support when you need it.  Not sure if you have been following any of our stories from the old forum, or on this one, but some of us have had a pretty torrid time of things but that means we have plenty of experience and advice to dispense.

Grrrr! It makes me so mad to even think of medics still adopting the wait and watch approach.  Be strong Tiniegil, don't be fobbed off and keep pushing for a positive outcome! And most definitely don't put up with 'ageism' - age doesn't come into it as long as you're fit enough for surgery, which is the only cure for PHPT so don't settle for anything less than a surgical referral.  

Look forward to hearing how things go for you.

Jasmine x

Hi Tiniegil
I agree with what everyone else has said re don't be fobbed off even if it means you have to push the docs for a referral.
Welcome to our band of merry PTH warriors, we are hear for support, help and if all else fails someone to rant at, we've all done it and as some of us are 2/3 rd time rounders we've ranted aplenty.  
Amanda xxxx

Hey There Tiniegil, welcome!! Yep, it is a shame any of us has to be here, but what a GREAT place to be when you're going through all the crap that this awful disease entails! Everybody here is more than happy and ready to help you through your journey.

I am now 5 months post-op. I had my surgery in Tampa in November. Not sure yet if my surgery was a success, since my calcium is still in the 10s. The doctors tell me I'm cured, but, then again, they all told me I didn't have hyperparathyroidism when I had 2 tumors in my neck, so I'm not sure if I can believe them now either. Time will tell.

Sorry I can't help you with the doctor/surgeon situation there in the UK, as I'm in the US, but if it's support, info, or tips you need, I'm here for you, as is everyone else!

Audrey

Lucycatnaps wrote:I am also hypothyroid for the last 10 years and feel it is undertreated.  In fact I went this morning to GP to get a final set done ready for the big day, he has been supportive and is convinced I have HPTH, he has given me the blood forms and told me to wait until week before appt so they are an up to date result.  He is redoing TSH as well , I have a feeling my thyroid went a little manic in January too as had lots of palpitations, I take 75/100mcg alt days at the mo and that has been a fight to get that as they go by TSH results rather than how you feel.  My TSH is now running around the 1 mark and I feel better than when its up in the 2 or 3's. And yes just found out I have a gallstone too
Hugs Sue
PS Forgot to add I am 58

Hi Sue

TSH is not a useful indicator of Thyroid hormones once you are on Thyroid medication.
The important tests are FT4 and FT3.
Unfortunately, most docs have been taught to use TSH as the reference for managing medication, but this is so very wrong.

The Thyroid puts-out T4, which is distributed around the body and converted to T3 by the parts of your body that need it (which is just about everything).

So, T3 is the key for the maintaining the body's metabolism.

If your Free T4 (FT4) is low, you do not have enough T4 being distributed and you get Hypothyroid symptoms.
If your Free T3 (FT3) is low, then you do not have enough T3 to support your metabolism at normal levels and you get Hypothyroid symptoms. 

If you have 'in-range' T4 levels and have Hypothyroid symptoms, it is likely that you are not (or partially) converting T4 to T3 and you may need to take T3 medication in addition to, or instead of T4 (Levothyroxine).

Edwin

Hi Edwin,
Firstly I hope you continue to be on the mend and are still taking things easy.
In a nutshell, a few years back I had a real run in with my registered GP regarding my thyroid.  I refuse to see him now and always see another in the practise.  I don't think I have knowingly had T3 tested although I am pretty sure as you say that I don't convert T4 well enough.  At the time I asked about Armour and Cytomel but they point blank refused to prescribe either as my TSH was within normal limits.  They did send me to see a consultant who I now know was not an endocrinologist, just a medical consultant who looks after strokes.  I thought he was pretty useless and again just went by TSH levels. He told me that it would be wrong to increase my thyroxine and that some people go through periods of fatigue, then discharged me back to GP. I have now learnt to never take my thyroxine on the day I have TFT's taken.  When I see this new endo I will bring it up again.
Thanks for the info, you know, I know, shame the local medics don't.
Sue

Hello Tiniegil, I haven't really got anything to add, just wanted to say "Hi":-)

Lucycatnaps wrote:Hi Edwin,
Firstly I hope you continue to be on the mend and are still taking things easy.
In a nutshell, a few years back I had a real run in with my registered GP regarding my thyroid.  I refuse to see him now and always see another in the practise.  I don't think I have knowingly had T3 tested although I am pretty sure as you say that I don't convert T4 well enough.  At the time I asked about Armour and Cytomel but they point blank refused to prescribe either as my TSH was within normal limits.  They did send me to see a consultant who I now know was not an endocrinologist, just a medical consultant who looks after strokes.  I thought he was pretty useless and again just went by TSH levels. He told me that it would be wrong to increase my thyroxine and that some people go through periods of fatigue, then discharged me back to GP. I have now learnt to never take my thyroxine on the day I have TFT's taken.  When I see this new endo I will bring it up again.
Thanks for the info, you know, I know, shame the local medics don't.
Sue

Hi Sue

If you get the choice, try to find an endo that specialises in Thyroid.
Most endos spend most of their time on diabetes and, from what I have read on other forums, know as little about thyroid disease as most GPs    and believe that TSH is the driver for medication levels.

I agree with Edwin on this. My endo doesn't know much at all about parathyroid issues, and I am wondering just how much she knows about thyroid problems. All of my doctors rely on the TSH to determine whether or not a person needs medication adjustments. I have asked them repeatedly what it matters what the TSH level is, when it is the T3 that our bodies actually utilizes. They just tell me that if your body needs more thyroid medication, your TSH will be high. They never really answer my question! It is sad that the doctors are taught 1 way of thinking in med school, and they simply refuse to think any differently!

Audrey

Just wanted to say thank you to you all for your messages and thoughts too, is looking like a minefield then from what I am reading, can anyone tell me the best place to go if I considered the private option not sure if this may be the best way to go? and  a bit cheeky I know but an approx. cost (not holding anyone to it for consultation and op if required).

Hi tiniegil

I checked this out with the secretary of Mr Greg Sadler at Oxford because although he will see NHS patients there is no guarantee that he will perform surgery himself, although he will be "in the room" according to his secretary.

I think the cost was in the region of £7000 for the op, which makes a trip to Tampa for the op at around $10,000 quite a good deal!

I hope others will be able to offer more precise details of costs etc when they add to this thread.

Love Tigerlily xx

Thanks you so much Tigerlily have you had a op yourself if so where too ? look forward to hearing of any other reccommedations too, liking the Florida idea holiday too ! well maybe....... one day. 

No, I'm still undiagnosed!! But as you say - maybe one day .....!

Tigerlily xx

I went to Tampa Tiniegil in Feb this year.  The financial package for surgery there is $11250 which is around £7000 give or take according to fluctuations in exchange rates.  Flights, hotel and car hire (if you want it) will be extra of course but you can shop around for good deals according to what you want.  Because we went in the half term hols our flights and hotel were a lot dearer, but in total we spent around £10000 with food and spends (we stayed for a week).  I couldn't recommend it highly enough, and Dr Norman himself does the surgery of all overseas patients.  Hope this helps.  I'm thinking the next best here in the UK would probably be Mr Fausto Palazzo at the Hammersmith in London (or the London Endocrine clinic privately), but I have also heard some very good feedback about Mr Robert Hardy in Liverpool.

Jasmine x

Should just say, I'm not sure about the cost of going private here in the UK - although I did for my first op last year I'm with BUPA and I can't recall how much they paid out but it was a lot more overall than our trip to Tampa.

J

Hi tinegli

Unfortunately I have had to have 2 surgeries as the first didn't cure me and first time with Andrew Maclaren it cost approx £8000 but second time at Hammersmith with Fausto Palazzo it cost slightly more. I am very fortunate to have BUPA cover and they have been absolutely fantastic in helping me through this nightmare. Hope that's helpful and best wishes
Lynn   

Have to keep thanking you all, it is tremendous just to pop on here and everyone helps and gives you a proper answer it is very much appreciated. I have got to see my GP so will ask him what he thinks again this time, will keep you posted. 

Hi tiniegil

If I can't get referred on the NHS to Fausto Palazzo at the Hammersmith for any reason (perhaps because I'm seeing so many people already who haven't been much use ..) I will take Jasmine's suggestion made on the old forum of having an initial first consult with him privately (about £200) in the hope of being referred back into the NHS system with him if further tests/treatment are necessary.

Has anyone here on the forum actually done this, by the way?

Love Tigerlily xx

You would have to check with him that he is willing to do that, some see it as jumping the queue so although you might get an initial diagnosis (or not) you might then have to get a GP referral to get onto a wait list to see be seen in the NHS clinic.

I saw a private Endo, had most of the tests done via my GP on the NHS and got the diagnosis but having surgery privately was silly money so my private Endo then had to ask my GP to refer me to the surgeon she recommended on the NHS as she couldn't do an NHS referral.

It can get a bit complicated doing both private and NHS at the same time but can be done. Also depends on your GP as some will not refer to NHS if you are going private as well.

Nelly