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Hi from newbie and wow

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Hi from newbie and wow

Post by kevsky on Fri Mar 17, 2017 10:46 pm

First topic message reminder :

Hi all,
 I may be a new member of the "club" in all ways.
Started a few weeks ago when my bloods where checked, i'm afraid I am not yet able to
use all the correct terminology so please bear with me.
After constantly seeing my Dr's for various aches pains Hyperparathyroidism was mentioned.
I have started the ball rolling by seeing a Endo privately.
I have today had a ultra sound but nothing showing.
I now have to see the Endo to see whats next but in the meantime
I would be grateful on opinions of my Blood results as below

07/12/2016      PTH 120 ng/L
" "                vit D 27.8
     
then checked again on
02/03/2017    vit D 27.3
                   White cell count  10.6
                   Calcium 2.71
The initial blood tests in December where not picked up on by my GP!
Only when going at the end of February to moan again about how I felt did the GP ask
why I had not seen anyone about the first results! so I was then sent for the second lot of bloods dated
02/03/2017.
Due to delays and as I pay to a scheme that covers initial consultation I saw an Endo privately 
More to this than I have typing power to cover but my GP practice in turmoil with GPs leaving
and All staff also!!
hope this makes sense and if anyone has an opinion on my blood results so far
Kev

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Re: Hi from newbie and wow

Post by kevsky on Tue Oct 17, 2017 7:57 pm

Hi Tigerlily,
nothing on the ultrasound
it would be nice for something to show but i realise
it is not always the case.
I feel I am in the right hands now tho

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Re: Hi from newbie and wow

Post by Tigerlily on Tue Oct 17, 2017 10:55 pm

So good to have confidence in your team.

If nothing shows on the sestamibi, it might be hyperplasia, but let's hope something shows up.

Do let us know the results of the scan when you have them.

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by kevsky on Wed Oct 25, 2017 11:16 pm

Hi Tigerlily, sorry for late reply.
nothing on any scan so far, will keep posted
kind regards
Kev

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Re: Hi from newbie and wow

Post by Tigerlily on Fri Oct 27, 2017 2:01 pm

No worries, Kev.
Hyperplasia of PTH glands often does not show on scans. It seems to be an enlargement of the glands causing excess PTH to be secreted, but before the formation of an actual adenoma.
Are you being referred to a surgeon for their opinion of your case? It is the biochemistry that is diagnostic, not the scans.

Best of wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by kevsky on Fri Oct 27, 2017 11:05 pm

Hi Tigerlilly
The surgeon ( mark Lansdowne) has requested this scan, hopefully he knows the score and will make the right call. I have to trust someone
Kev

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Re: Hi from newbie and wow

Post by Tigerlily on Sun Oct 29, 2017 9:21 am

Yes, absolutely, Kev. Confidence in your surgeon is essential.

The surgeon orders the scans for localisation to aid in surgery. If nothing shows up, the nuclear scan could have been done incorrectly or misread. Someone I know had a nuclear scan that was read as showing nothing, but the surgeon turned up the contrast and there it was, clear as day!

Let us know what the plan is, when you know.

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by Selby on Sat Nov 25, 2017 5:40 pm

Hi Tigerlily,

I've just joined the forum to update you , and found Kev's adventures.

I'm no less confused now having seen Mr Chadwick, had the Ultrasound and Sestamibi test. The Ultrasound found nodules but nothing else, and no adenoma resulted either during the main test, My Calcium level seems acceptable to Mr Chadwick, and while he would explore and examine all four parathyroids if I wished him to - he delivered the normal warnings of possible damage to the voice box etc - and, of course, the likelihood of not feeling any better afterwards...didn't mention at all the nodules, only to dismissed them as of no concern when I enquired about them.

He disregarded my real concern for the dreadful sweats that occur throughout each 24 hours - my spouse has to endure living with fans everywhere - whatever the temperature - suffering equally with me! According to an American site - it is known to affect older women patients of HPT - not known of by Mr Chadwick. He suggested that maybe my thyroid was responsible for the problem.

I liked Mr Chadwick, I also felt something of a fraud after the results of our two encounters, and after I accepted his suggestion that we meet again in four months, I felt desolate! My poor spouse whom I asked to join me in the meeting with Mr Chadwick - to absorb and regurgitate the conversation later for me, was disconsolate that I'd agreed to yet another chunk of time to pass without progress.

See the site: http://parathyroidprimer.com/symptoms/ - Symptoms of 'Classic' Hypercalcemia. Mike found it after our return.
 
I HAVE ALL OF THOSE SYMPTOMS - INCLUDING THOSE ON PAGE 2!

I chose 'THE SWEATS' as the subject of my consultation with my GP yesterday.....round and round and round........

Keep your chin up Kev...

Kindest of regards to all fellow sufferers - and supporters! X

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Re: Hi from newbie and wow

Post by Tigerlily on Sun Nov 26, 2017 11:59 am

Just a couple of points - and glad you got back to us on your progress, Selby - firstly a lot of us have thyroid nodules that dont seem to cause any problems.

Have you had your free T3, Free T4, TSH and thyroid anti-bodies tested? I have Hashimotos autoimmune thyroiditis and I really chime with your description of the sweats. Not quite as bad as fans in every room, but general bursts of high heat during the day - as in, is it me or is it really really hot in here?

I think David Chadwick could be right that a thyroid function check would be in order. Edwin and Nelly here will be able to help further on this.

Also, you say your calcium is acceptable, but do you have readings of parathyroid hormone to go with your calcium levels? Diagnosis of primary HPT is via the levels of Ca and PTH and their relationship, although I expect you know this.

You could just think this all over for a while and then go back to David Chadwick again. He has not closed any doors for you, the way I read what you have written here.

Are you able to post some Ca/PTH levels here?

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by Selby on Tue Nov 28, 2017 5:38 pm

Hi Tigerlily,

No - my GP doesn't see results from Mr Chadwick's blood tests, I had one at Nottingham last week when I saw him last, so I've booked a Ca and PTH one for next week. Can't remember when I had the anti-bodies tested....

Mr C. seemed happy with my Calcium level - which is why I opted to let things lie until next year, in spite of wanting to move forward, he also found Notts, test results to be different from those from our local Lab....they do vary, it seems.

It's all very trying....

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Re: Hi from newbie and wow

Post by Tigerlily on Wed Nov 29, 2017 6:18 pm

Very trying indeed. Do let us know the results of your Ca and PTH this time when you get them.

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by Selby on Mon Dec 04, 2017 4:42 pm

Hi Tigerlily,

Just picked up blood test results from last week....

            Result     Range

 Ca.      2.40    2.2 - 2.6

 Adj     2.49    2.20 - 2.60  (Adjusted Ca)

 PTH.    16.6    1.6 - 6.9

The others are either close to but just outside - or inside range. Mr Chadwick didn't mention the relationship twixt Ca and PTH - seemed to be suggesting 'seeing what develops' - which is why I couldn't think of a reason not to. 

I'd appreciate your evaluation/s Tigerlily, Edwin and or Nelly because I've had little information to work with from the 'experts'...and only want to point myself in the right direction to recover my health. 

Love to you all.

Selby.

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Re: Hi from newbie and wow

Post by Tigerlily on Tue Dec 05, 2017 2:56 pm

Hi Selby

Thanks for posting these results.

Your PTH is almost 3x the top limit of normal and in my layman's opinion it should not be so high with that calcium level. I think you might have so-called normocalcemic hyperparathyroidism. But this could also be just a moment in time where your calcium was tested and had fluctuated downwards. If you have other tests where your calcium is above 2.6 then it would not be normocalcemic HPT.

 David Chadwick is well known in patient circles for not being afraid to operate with these levels. I am surprised that he wishes to keep you waiting for surgery.

In your position, I would graph all my results in order to show the pattern, and send it to him asking if it is possible that you might have normocalcemic hyperparathyroidism.

I hope Nelly and Edwin will hop on here soon to give their view.

If you feel unable to approach David Chadwick, you could ask a sympathetic GP to test Ca/PTH/Vitamin D every 3-4 weeks or so over the next 3 months, to get more readings and a more extensive pattern, but it looks to me like primary hyperparathyroidism (possibly in the form of hyperplasia, as I had).

Meantime read as much as you can at www.parathyroid.com. UK patients get a lot of good information from there. Also check out Dr Babak Larian's monthly Q & A sessions on Facebook for more measured and less marketing-driven information.

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by Tigerlily on Tue Dec 05, 2017 3:01 pm

Just another thought, Selby - have you had your vitamin D level checked recently?

Most endos and surgeons would want to see your vitamin D at least in the "sufficient" range of around 60 before considering surgery, because they think vitamin D deficiency causes a high PTH level, which it can if you have secondary HPT and severe kidney issues. But Vitamin D deficiency cannot cause high calcium levels, and 2.49 would be considered high normal, I believe.

Back with more suggestions as they come to me!

Best
Tigerlily xx

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Re: Hi from newbie and wow

Post by Admin on Tue Dec 05, 2017 5:00 pm

Another thing to consider is renal function.
Have you had this tested recently (e.g. eGFR, Creatinine, Urea)?

Secondary Hyperparathyroidism, where PTH is high but not Calcium, starts to show-up with stage 3 CKD (Chronic Kidney Disease).

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Re: Hi from newbie and wow

Post by Selby on Tue Dec 05, 2017 6:53 pm

Thank you both for the input - Tigerlily, I was 'Vit D replete' to quote Mr Chadwick in October - so very recently...could it change so quickly?

When the Practise Nurse took the blood test last Thursday she excluded Vit.D, as is now up to the patient to self treat if considered to feel low in the vitamin.....!

Edwin, yes I've had renal function tests done more than once with no cause for concern, although it was mentioned also by Mr Chadwick that he as slightly concerned that GFR level was only 45.

Thanks again, both of you.

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Re: Hi from newbie and wow

Post by Tigerlily on Tue Dec 05, 2017 8:12 pm

Yes that's quite a low eGFR, Selby, I hope Edwin will be able to give a view on it.

Love it that we have to diagnose our own Vitamin D level without access to a test!
I've heard it all now!

If you have a Vit D deficiency though, it could change that quickly. I went from 70 to 38 in the two weeks in the sun I had when I wasnt taking my usual 2000 iu daily, thinking I would get it from the sun. But I obviously dont metabolise it correctly from the sun.

As Edwin says, in secondary HPT PTH is high but calcium is not. It might be worth getting secondary HPT ruled out though, perhaps by another letter to Mr Chadwick?

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Re: Hi from newbie and wow

Post by Tigerlily on Tue Dec 05, 2017 8:16 pm

Just re-read your post - you mention the practice nurse taking the blood.

It has come to light on another forum that GP surgeries are often unable to get PTH samples to the lab quickly enough, and sometimes they are not put into phials containing EDTA (anti-coagulant - if the blood sample is coagulated when it reaches the lab it it not possible to get a correct PTH reading from it).

It might be worthwhile trying to have your blood taken for testing at the nearest hospital in case your PTH is actually higher than your current readings, in light of this.

Tigerlily xx

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Re: Hi from newbie and wow

Post by Selby on Tue Dec 05, 2017 9:20 pm

I must say the system seems to be pretty efficient here in this rural area, the bloods are collected at 10.00am with appts. from 9.00am to 9.50,in order to get them to the local lab, in good time....

Mr Chadwick's report to my GP as a result of our last meeting seems to accept that I have normocalcaemic HPT, and we discussed my troublesome sweats which he 'couldn't relate to my calcium'. He noted that they hadn't checked my thyroid function in view of the sweats, so had that test done while I was seeing him that day. He said that he would write to the GP with the outcome - although he 'suspects that this will not be related to thyroid dysfunction'.

 I saw her about 10 days ago and think I'm right in saying that she hadn't had the result sent to her, anyway, she suggested I try oestrogen treatment to augment my Tibilone (HRT) for a month, to see if that helps...and I was happy to give it a whirl...wondered if it would help what's left as an excuse for hair...thin dead wire - is a better description! XX

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Re: Hi from newbie and wow

Post by Tigerlily on Wed Dec 06, 2017 11:10 am

So you are waiting for results now then - perhaps contact Mr Chadwick's secretary to ask where they have got to?

Glad to hear your blood letting is good where you are!!

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by Admin on Wed Dec 06, 2017 5:28 pm

An eGFR of 45 indicates Stage 3 CKD and I would expect you to have been referred to a nephrologist for renal blood levels monitoring, dietary advice and scheduled follow-up appointments.

Key things to focus on to support kidney function at this stage are controlling salt intake and keeping blood pressure under control.
When I was at that stage, I started looking at food labels and packets.  It was surprising how much salt is in everyday foods, sauces, supermarket sandwiches, processed food, ready meals, cereals, bread, etc.
It will help your heart if the Potassium level is managed (as CKD progresses the kidney gradually loses its ability to manage minerals and vitamins).
Similarly Phosphate level, which is connected with PTH, along with Calcium and Vit D.
CKD patients usually get prescribed a Vit D analogue (e.g. Alfacalcidol).  The kidney is responsible for extracting Vit D, but loses this ability with renal function loss.  Alfacalcidol bypasses the kidney to maintain the Vit D level.

Also, as Hypothyroidism is another of my pet subjects, all organs in our bodies are reliant on getting their optimum level of T3 (the active Thyroid hormone).
The long-term impact of low T3 is that the body's organs gradually lose their function.
Getting Free T3 tested can be quite a challenge, as most of the great and good medical professionals mistakenly believe that TSH (a Pituitary hormone) is the best indicator, followed by Free T4 (which is a pro-hormone) that is supposed to be converted to T3, provided that vitamin and mineral levels are optimum (around mid-range).

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Re: Hi from newbie and wow

Post by Tigerlily on Thu Dec 07, 2017 8:14 pm

Thanks for this Edwin - always useful information for me too!

Tigerlily x

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Re: Hi from newbie and wow

Post by Selby on Thu Dec 07, 2017 9:08 pm

I've taken in what you've both said and think that my next move should be to have another chat with my GP. I should imagine that she could initiate another Vit.D check if I asked for it Tigerlily, don't you?! My skin is flaking on my face again, is that a sign...? 

 In light of your advice Edwin, it seems that I might have to open up the subject of the low eGFR, perhaps Mr Chadwick has left it to the GP to take the next step. He showed some concern about my low reading but didn't recommend referring me in his last report to her. 
I wonder if he's passed on those blood test results...

I didn't expect to have to build such a level of knowledge and steer my own treatment...as for T3 - it seems to be a dirty word, how dare I raise that subject, in spite of Mr Chadwick's suggestion that my sweats could be down to the thyroid...

I must stiffen my back!!! XX

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Re: Hi from newbie and wow

Post by Admin on Thu Dec 07, 2017 10:13 pm

It will be your GP that is routinely responsible for referring you for renal follow-up.
Maybe your GP is not aware of your eGFR, so it is down to you to raise this.

For outpatients, specialists in one discipline are not routinely supposed to refer patients to another discipline as they may not have the appropriate knowledge, but they can make the suggestion to your GP if they recognise that something needs follow-up.

I suggest that a Vit D check is done at the same time as a renal check by your GP.

When you receive a copy of your results from the hospital, I suggest handing a copy to your GP.

GPs tend to only have access to results from the blood lab that they use (probably at a local hospital) and you should assume that an out-of-area consultant will not have access to your GP blood results, so handing over printed copies is worth doing.

It's a little different with renal blood results for some CKD patients.

If and when you see a renal consultant (nephrologist), ask if they use 'Proton' for blood results and whether they are signed-up with 'PatientView'.

If yes to both, this is good news once you are signed-up to use PatientView, as you should be able to access your renal results on-line very shortly after the lab has processed the bloods.  You can setup your account to send you notifications when new results are available.

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Re: Hi from newbie and wow

Post by Tigerlily on Fri Dec 08, 2017 9:21 am

Good Luck, Selby - Edwin's advice is always excellent.

Yes, this is the way the NHS seems to be, going forward. You have to be your own advocate and follow everything up. I need a secretary of my own!

Keep us posted on developments.

Best of Wishes, Tigerlily.

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Re: Hi from newbie and wow

Post by Selby on Fri Dec 08, 2017 5:31 pm

Tigerlily and Edwin - you are educating me!
 
What you say makes perfect sense Edwin, and I now recognise that Mr Chadwick was suggesting a follow-up by the GP.
I will indeed request a VitD test - and having now researched eGFR on the NHS website, a renal test too.

It's the next part of your advice that leaves me with unanswered questions,,,with reference to blood test exchange between medics. I've had comments from across both sides -GP and consultants, that they don't get to see test results from the other - my GP hadn't seen my Nottm. blood test results in spite of the consultant reporting that he would send them - about three weeks on.

I have yet to receive test results from a hospital in my hand, but find your advice to deliver acquired copies across the divide a sensible one - having experienced situations where a consultation was apparently incomplete without that evidence! And there was me assuming that any required test results would be forwarded along with the request for an appointment to see the patient!

It's clear to see that CKD patients are in a different health category - with a need for the additional link for patients. There is much to discover about 'PatientView' and 'Proton'. On seeking to learn more, we find they have been available since 2005 at least, yet we've heard nothing of the service. Although designed for certain health conditions, it would be a great advantage for enabling patients to feel included and more involved in their personal health, I feel.

Learning from you Tigerlily and Edwin to follow up my VitD and low eGFR  meant that I found other links to possible low kidney function - like my badly swollen feet - the right more than the left???! (a long term problem for which I've been treated in various parts of the country with wee tablets - and even double wee pills), none of which helped really...

Anyway, another GP appointment has been made, and off I go in two weeks time - with a list of questions and recent blood result - in my hand!

Bless you both, until next time. XX

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