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Post by Hela on Thu Sep 29, 2016 9:28 am

I am a newbie here. In 2008 I had large doses of radiotherapy to head and neck area. In 2011 I was diagnosed with MS/CFS & fibromyalgia and my health has been getting steadily worse including daily headaches with little help from GP. Last week I tried one more time to get help, told the GP I couldn't carry on any more like this and insisted on blood tests.  I had blood pressure taken and it was very high. Bloods came back with thyroid out of range and elevated calcium levels, so more bloods taken and nurse mentioned they were for parathyroid.  Looking at one site the symptoms for parathyroidism fits especially as I had maximum radiotherapy both sides of head & neck for cancer of unknown primary in 2008.    I would like to have done some homework before my next GP appointment when I will be given results, but I expect to be referred to an endocrinologist. Has anyone else had parathyroid problems/tumors and/or can anyone please give me any information or advice. Many thanks  

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Re: New member

Post by Hadleigh on Thu Sep 29, 2016 11:06 am

Hi Hela and welcome

I got as far as your second sentence and thought hmmmm thyroid, a diagnosis of cfs and fibro is a typical misdiagnosis in thyroid disease, do you have your blood results ? we have experience with both parathyroid and thyroid so can chat about either and hopefully point you in the right direction.

Have you been started on thyroid meds ? I presume you are underactive ? I think that they will probably want to get your thyroid under control before getting to excited about your parathyroid, although the doctors don't know it there are many pth patients who also have thyroid disease and I know others on here have had to put pth on the back burner while thyroid levels were stabilised. I myself have had thyroid disease, both hyper and hypo for most of my life and even though that was stable the Endo still wanted to mess with my meds before accepting I had hpth ! I had pth surgery 3 years ago, difficult op as I had previously had thyroid surgery but it seems to have worked as my levels are down.

So first thing is to get copies of your blood result, with the ranges, and if you would like to post them on here we can help interpret them. There's lots of info about hpth in the reference section plus some covering thyroid stuff.

If you are going to be referred to an Endo choose carefully which one, many have virtually no experience of parathyroid disease so will take the watch and wait approach, not good, you need one who knows what's what.

I will say if this is your first high calcium don't assume it is hpth, it could be a one off blip or be due to other causes, we usually need a few highs to set the alarm bells ringing. It's possible that having your thyroid properly treated will send the calcium back to where it should be, of course nothing is simple in that getting adequate thyroid treatment can be a nightmare and a long haul, thyroid disease is another thing Endos are generally hopeless at managing, most are diabetes specialists, not thyroid !

I'm afraid the forum is quite slow these days, most members are cured and off living their lives, but there are a few of us still around to answer questions when they crop up.

Have a read around the posts and info section and please feel free to ask for help, either thyroid or parathyroid.

Nelly
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Re: New member

Post by Hela on Thu Sep 29, 2016 11:20 am

Hi Nelly,
Thank you for your helpful reply.  No I haven't had any thyroid meds. Up till now thyroid blood test has been within the NHS's range. Previous test was 2 years ago, This time all I have been told is that thyroid not within range, elevated calcium and further bloods needed as suspect parathyroid.  The nurse would not give me the results, so I have to wait for GP appointment next week.  
I will ask for a print out of my blood results. Also I wanted to get a step ahead and be referred to a very good endo consultant surgeon who does the minimally invasive surgery if it becomes necessary.  The local Endo's do not seem experienced in surgery. But seems difficult looking/finding the right one.
My neck is 'tight' and stiff, but has always been put down to scar tissue from radiotherapy.  I think a lot of symptoms have just been put down to late effects of cancer treatment and ME.  So feel I really need to be on the ball now.
Hopefully the GP will give me a printout of the blood test results and I'll post them here.
Many thanks

Hela

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Re: New member

Post by Hadleigh on Thu Sep 29, 2016 12:01 pm

Your GP cannot refuse to give you your results, legally you are entitled to all test results and it shouldn't be a battle to get them, very important to keep your own records especially with thyroid and parathyroid as we can't rely on doctors to keep track !

Whereabouts are you ? we have a list in the info bit of endocrine/ pth surgeons, Endos are a bit more hit and miss I'm afraid, you just have to google and find one who at least has an interest in thyroid/parathyroid but even then its not easy, I chose to see my Endo privately having picked her off the list but actually she turned out to be pretty awful, she found it hard to put 2 & 2 together !! If I hadn't been on the ball we wouldn't have got anywhere. Endos generally don't do surgery, you get general/endocrine surgeons but they aren't Endos so you need to see one before a referral to the other.

I would honestly wait and see what your results show, hopefully you have had TSH, T4, T3, calcium, pth, vitd, phosphate and renal tested, all those should give clues, then if a referral is needed have a short list of hospitals/names, call their secretaries and ask what they specialise in so you can pick the best of the bunch, but it's a bit of a minefield. If it looks like hpth is likely then a dexa scan, ultrasound and sestamibi scan would be needed for a definite diagnosis but that's a way off yet.

Do keep us posted and we are happy to look at results for you.

Nelly
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Re: New member

Post by Hela on Fri Sep 30, 2016 10:17 am

Thank you  Nelly, I'll have a look at the list.
Nurse from surgery just rung. My GP will be ringing me this afternoon to discus results.
I'll keep you posted
Best wishes
Hela

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Re: New member

Post by Hela on Sat Oct 08, 2016 1:18 pm

Hello again.
Yesterday I went to GP and got all my blood results.  I am being referred to an endocrinologist for scans and then will be referred on to a surgeon who can do the minimal invasive surgery to remove the problem parathyroid gland(s).

Serum parathyroid hormone 8.9 = high (range =1.6 - 6.9) consistent hyperparathyroidism
Serum Calcium 2.75 = high (range = 2.10 - 2.60)
TSH levels 4.61 = high (range = 0.27 - 4.20)
Red blood cell distribution width 17.7 = high (range 11.0 - 14.Cool  Don't know what this means
Serum Albumen 51 = High (range  35 - 50) don't know what this is

The printout says "high" - is this very high or just above the range?

Any comments, advice gratefully received
Many thanks  Smile

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Re: New member

Post by Hadleigh on Sat Oct 08, 2016 2:35 pm

Hi

Your results are high but not too drastic, if calcium (which gives the symptoms) goes above 3 its getting into the dodgy zone, to compare with some of my levels calcium 2.81 and pth 8.1 but these go up and down.

Your TSH is to high and shows your thyroid is struggling, you really need a FT4 and FT3 result to see just how bad it is. Most of your symptoms are quite likely caused by your thyroid rather than parathyroid. As the range stops at 4.20 your Gp should be starting you on replacement hormone treatment, this would be Levothyroxine, starting dose usually 50mcg. Assuming you have primary hpth and will need parathyroid surgery your surgeon may want your thyroid stabilised first, this has happened to some of our members and my dose of Levo was adjusted pre surgery.

Red cell width can amongst other things indicate anemia (common in hypothyroidism) and raised albumin could be something simple like dehydration or a cuffed sample, without the associated results its pretty meaningless but with both thyroid and parathyroid problems going on you will get results slightly off as both of these, particularly thyroid, affect many/all processes in the body. Your Endo will hopefully decipher them better than I can !

If your Endo appt is a way off I would go back to the GP and ask to be started on Levothyroxine, no reason why he/she is waiting for the Endo's say so but ideally they need to do a T4 and T3 blood test, TSH result on its own is useless, you particularly need to know the T3 level which is the active hormone your body needs, bit like the petrol in a car, if the tank is empty the car won't go !

Keep us posted and I'm here to help if I can.

Nelly
PS you may struggle to find a surgeon who does the minimal op, and its not always the best option as they can't see all the glands to check for more adenomas, also a problem if the adenoma is not where they thought, happened to me, hence a 4 hour op !
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Re: New member

Post by Hela on Sat Oct 08, 2016 3:27 pm

Many thanks for your reply.  If I've not heard anything from the hospital about the referral by next week I'll ring and also go back to GP.  
Thanks also for the info about the minimal op. I was thinking that may be better due to anesthetic and I have no saliva, so will be extremely uncomfortable coming round and not being able to talk or reach for water.  But will have to go with whats best to solve the parathyroid problem.
Thanks for your help.
Smile

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Re: New member

Post by Hadleigh on Sat Oct 08, 2016 4:07 pm

You will still have an anaesthetic with a minimal op, you may find a surgeon happy to do it but must be very experienced. It's also a good idea to stay overnight in hospital in case of problems with low calcium. Some hospitals do pth surgery as a day case which is not ideal. I was first on the morning list and left late afternoon the next day and that was a major effort, no way could I have gone home the same day, my calcium and PTH hit the floor post op which was not pleasant !

Nelly
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Re: New member

Post by Hela on Sat Oct 08, 2016 4:33 pm

OK thanks. A lot to think about. Yes I would probably prefer to stay the night in hospital just in case.
Hela Smile

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Re: New member

Post by Tigerlily on Wed Nov 09, 2016 12:47 pm

Hi Hela
How have things been since your last post.
Do update us if you feel able to.
Best of Wishes, Tigerlily.

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Re: New member

Post by Hela on Fri Nov 11, 2016 10:55 am

Hi Tigerlily,
Thnaks for your post.
No progress since my last post. My GP did refer me to an endocrinologist. On chasing, I was put down as routine referral rather than urgent (which it should have been due to past cancer and radiotherapy in head & neck area), which meant I wouldn't get an appointment until well into the new year. 
Went back to GP, who told me that the endo has retired and there is now a different endo to refer to.     She has re-referred and asked for urgent appointment.    I don't know why she herself can't refer me for ultra sound scans as she has now, at my request,  referred me for a bone density scan.
So I am still waiting.  Should I be asking for anything else, like regular blood tests, urine tests or anything else?

Thank you  Smile

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Re: New member

Post by Tigerlily on Fri Nov 11, 2016 5:02 pm

Hi Hela - good to hear from you again. Sorry to hear it has been a bit long-winded for you but hopefully the endo appointment will arrive soon.

Meantime, a bone density scan is a good idea to check for osteopenia/osteoporosis.

An ultrasound would be good too, but I have noticed that some hospitals won't do these separately when referred by a GP. It sometimes seems to have to be an endo referral for an US of the parathyroid glands, perhaps because it's quite a specialist scan in terms of who does it. Also, the US and sestamibi scans are often instructed together only by the surgeon pre-operatively to locate possible enlarged glands; they are not routinely used for diagnosis (that should be possible from the calcium and PTH levels over a run of blood testing), so your endo might not refer for these either.

May I ask which part of the country you are in? We might be able to point you in the direction of useful people. Could you easily travel to London, for instance?

Your medical background would make me wish to tread very carefully regarding the parathyroid issue, and you would need to put yourself in only the most expert hands for PTH surgery because of it.

If you have a sympathetic GP, you could ask for a 24-hr urine calcium test whilst waiting. If your urine calcium is also high, that would also be a pointer towards primary hyperparathyroidism. You could also ask to have your Vitamin D level checked, as Vit D deficiency often runs alongside pHPT, but is generally not the cause of it (as many endo's seem to think).

Have a look at the pages of www.parathyroid.com. The information to be found there has been most useful to a number of us in educating ourselves on the subject.

Hopefully your endo appointment will come up soon if you have been referred urgently. Please keep us posted on developments, and take good care of yourself in the meantime. Let us know if you have any more questions and we will try to answer them for you.

Best of Wishes, Tigerlily.

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Re: New member

Post by Hela on Sat Nov 12, 2016 8:57 am

Hi Tigerlily,


Thank you for your info about scans and who refers, that is useful.


I live in Mid Wales, close to the borders of Shropshire, so my nearest hospital is Shrewsbury and that's where I've been referred.  I have looked at a couple of endos in Cardiff that seem to have a good reputation. My GP suggested that I get an appointment with an endo nearby first and then have the operation, if deemed necessary, with a hospital/surgeon of my choice. But my thinking now is that if the local endo doesn't deem an operation necessary, I wont then be referred to Cardiff.


I understand that the surgeon in Shrewsbury is Andrew Haughton. Cardiff surgeons I found out about are David Scott-Coombes and Michael Stechman (who does the minimal invasive surgery).  They seem very knowledgeable and experienced but can never really tell from reviews until you get to see them.


I realise that you may not be able to actually recommend anyone, but  if you do know of anyone not too far from me, it would be useful.


Unfortunately London would be too difficult for me due to distance, levels of fatigue and I care for my 89 year old mother, so any time away causes problems.

I am concerned too about my past history, and I haven't much faith in Shrewsbury due to past experience

I will ring the hospital next week and find out about waiting times for an appointment. With a view to going to Cardiff straight away. (I feel if I go to Shrewsbury, I'll end up on that track and may be harder to go somewhere else after).



I will ask GP for 24hr calcium test. Re the Vit D, I am already on Vit D supplements. The GP prescribed them a few years ago due to my fatigue and not getting out much.  I did ask her to test for magnesium and Vit D, but these were omitted from the lab requests.

Thank you for all your help and advice, it is very much appreciated.



Very best wishes

Hela

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Re: New member

Post by Tigerlily on Sat Nov 12, 2016 1:46 pm

Hi Hela

Sorry to hear how complicated things are for you, but I think you have come up with a good plan to bypass Shrewsbury and try and get referred straight to Cardiff. I think Nelly and Edwin have experience of the set-up at Cardiff.

In the end I had to bypass the local hospital too - even though it was an eminent University teaching hospital, and get myself to a London endo surgeon with extensive experience in PTH disorders, as I was constantly told that I have secondary HPT due to Vit D deficiency. In the end I had 3 enalrged and abnormal PTH glands removed by Mr Palazzo on the NHS at the Hammersmith Hospital.

David Scott Coombes did 46 parathyroid surgeries in 2015, according to the BAETS Members' Surgery list (which I think Nelly has put in the reference section here). Almost one a week is considered a useful number to be able to have some experience. For comparison, Andrew Houghton did 30, and my London surgeon, Fausto Palazzo did 157.

I couldn't find Mr Stechman listed, so he may not be an actual endocrine surgeon (possibly ENT).

It's good that you are already taking Vit D supplements - so good! Because at least the endo won't be able to say that your PTH is high due to Vit D deficiency! Your GP has done you a really good turn by suggesting you supplement with Vit D. That's one hurdle you won't have to jump over, which saves a lot of time! 

If you are going to ask for a 24-hr urine calcium test, try and get the Vitamin D included as well if you can, so you have an up-to-date baseline level to be able to tell the endo what it is - it will gbe first thing he will want to check - this will save more time for you.

Don't be too worried about having the mini op or not. As Nelly says, it's best to have all 4 glands visualised at the first surgery, because subsequent surgeries to find glands not seen originally are much more complicated and need a really specialised and expert endocrine surgeon because of possible scar tissue, to prevent damage to the laryngeal nerve from further surgery, and because in some instances the glands are not where they should be in the first place. The thought of neck surgery is always daunting, but in expert hands you will be fine, and a slightly larger scar is a small price to pay so as not to have to go the whole procedure more than once.

If you have any spare time whilst waiting for appointments, the website www.parathyroid.com is a really useful one.

Keep us posted on developments - Best of Wishes, Tigerlily.

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Re: New member

Post by pilipala on Mon Nov 14, 2016 10:35 am

Hi Hela,

So sorry to hear about your health issues. It sounds as though you are starting to get somewhere regarding diagnosis/treatment and I hope you get some progress quickly.

I'm based in South Wales and have some experience of the service in Cardiff. I should point out that my case was much less straightforward since my raised calcium was always within the so-called 'normal' range. Still, I cannot recommend the the endos here - I was twice referred - had a total of 3 appts with different people - and they were all absolutely rubbish with regards to parathyroid issues and I kept being dismissed. I found the more senior they were, the ruder they were towards me. i won't share names publicly - but if you want more details PM me.

I definitely recommend skipping the endos and get a referral to a endo surgeon. David Scott-Coombes is apparently nice. I know a lady who had thyroid cancer and he removed all her parathyroids and she likes him a lot. He was polite when I emailed him. My understanding is that you cannot guarantee who you will get treated by under NHS Wales. The waiting lists are so out of control, you basically get the first available person not necessarily the one you want. In England you can choose to wait and see your preferred clinician so if you have the opportunity to register over the border you may get more choice - Birmingham for instance. A lady taking my bloods told me her son had pHPT in his twenties and a surgeon from Birmingham had to come down to South Wales to do the surgery because it was too complex. Though that was some years ago.

i had little choice since I was told that they not longer offered surgery to patients with normal calcium levels here. I'm not sure if that completely true since the doctor who said it to me has told me complete nonsense at times so I don't trust her. Nevertheless I went to Florida and had surgery at the Norman Parathyroid Center in Tampa. They do 12000 minimally invasive ops a year and so you can't get any more experienced than them. I went in at 6am. After scans and a 30min procedure where (like Tigerlily) they removed 3 hyperplastic glands I was out by lunchtime. i have a 2cm scar hidden in the dip in my neck which is very faint one year on. I was lucky to have savings which meant I could do this, I realise not everyone is so fortunate, but it was the best thing I've ever invested in.

Hope your appts and tests help you move forward.

Much love,
Dee

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