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Long time away

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Long time away

Post by Amanda123 on Mon Jul 04, 2016 1:22 pm

Hi Nelly Edwin & All

I've had to re-register, forgot details.
Its been a long time I have no good news about my health but just thought I'd bring you up to date.
No diagnosis still.
Pains in feet lower legs back & hands worse.
Suspected conjunctivochalasis in eyes, see 7th yes 7th ophthalmologist at Western Eye Hospital on Friday (this appt was meant to be in Feb but has been cancelled 3 times !!!!!).
Cholesterol has suddenly gone up to 8.4 from 5 last year, GP put me on statins but it's made ache even more, I've stopped them until I can see them again, next appt 22/7/16
Feel absolutely awful, have now got urine infection.
I have been contacted by Endo since I last spoke to you all, I'll keep it brief.
She rang to say she was taking my case to big meeting of Endos not sure if international or not as it was an interesting case if that was ok with me. Of course I said yes, she then contacted me after meeting to say, it's such an interesting case it was the talking point of meeting and has raised questions whether FHH causes hpth !!!!!!!!!!!!!!!!! she said it was seriously being considered and they would need to take it further.
Also she asked if I would approve my case being used in the British Medical Journal. I said yes as long as I get to see a copy before it's entered, I have received approval letter requiring my signature but as yet no copy of article. I will not be signing anything until I've seen copy, I have asked twice !!!!!
I see Endo on 14th and have got bloods to do including Calcium PTH, TSH, T3, T4, normal full bloods Vit D, Thyroid antibodies x 2.
It will be very interesting what shows up.
I was on thyroxine for a couple of months 50mg but didn't notice difference so they stopped it.
Last Calcium 2.66 PTH 5.40
No Rheumy appt until end of Nov he hasn't got a clue.
One ophthalmologist suggested it maybe thyroid eye disease but not classic symptoms as from outside eyes look normal.
Hope everyone as well as possible, sorry I've been away so long but I've felt so unwell I'm really struggling with just normal life.
Love Amanda

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Re: Long time away

Post by Hadleigh on Mon Jul 04, 2016 4:53 pm

Hi Amanda, it's so good to hear from you but I'm really sorry to hear you are still struggling. It's a shame the thyroxine was stopped as 2 months is really not long enough. The thyroid eye disease is interesting and certainly a possibility, not everyone has the classic symptoms, I had it mildly but no obvious signs, when I had RAI treatment they gave me steroids for 3 months so it wouldn't get worse.

You seem to be in a similar boat to Audrey with multiple problems and doctors who can't make a definite diagnosis, hopefully one day someone will get to the bottom of it for you both.

Not much to report from our end, I have developed arthritis in my right thumb + trigger thumb which is very difficult to live with, kind of need thumbs for everything ! I had a steroid injection in the joint last week but it's not made much difference, another one next week in the tendon but it will only be a temp fix if indeed it works at all. Edwin is doing ok on dialysis, now well enough to travel a bit but 2 days is the limit as he has to get back to be hooked up.

Forum is very quiet, posts are few and far between these days so I'm not sure how much longer we will keep it going, I seem to answer more PTH posts on the thyroid forum than here which is a bit bizarre.

I hope you find the reason for your symptoms very soon, do keep us posted, love to hear from you whenever you feel up to chatting.

Take care
Love
Nelly x

PS sorry about any typos, stupid tablet has a mind of its own !!


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Re: Long time away

Post by Admin on Thu Jul 07, 2016 9:45 am

Just to add to Nelly's reply, 50mcg thyroxine is a below average dose.
100mcg is more typical, but the usual process is to gradually increase from 25mcg to 75mcg or 100mcg over several months.

3 months is the typical period between blood tests and dose changes.
Thyroxine typically takes 6 weeks for full effect.

Free T3 and Free T4 blood results will be significant, although not the whole story.  Do not accept a 'normal' result for these.  You need to know the levels, so that you can get advice and suggestions from people who have greater knowledge and experience than most docs and endos.

For your info, high cholesterol is one of the many consequences of T3 deficiency.

Edwin

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Re: Long time away

Post by Amanda123 on Sat Jul 09, 2016 7:30 am

Hi Nelly & Edwin 
Thanks for your replies. My TSH had dropped below 1 so the GP said I should stop it as it obviously wasn't Hypo !
I'm sorry to hear you are having dialysis Edwin but hope its doing the job and making you feel better and Nelly you are right you do need your thumb.......a lot, hope it can be eased off.
I was seen at Western Eye Hospital yesterday after 3 hr wait because they lost my notes and I wasn't even going to be seen !!!!!!!
They say its inflammatory not sure whats causing at present, I need MRI and will go back 2 months.
I'm seeing Endo this week, had all bloods done and as I haven't signed consent form as yet I'm sure she will be very attentive.
I will keep you posted.

Amanda xxxx

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Re: Long time away

Post by Hadleigh on Sat Jul 09, 2016 9:04 am

Oh dear stupid GP, TSH should be below 1, did you have t4 and 3 done ? TSH on its own is useless, well it's pretty useless anyway. There are some new studies coming out that should make doctors stop and think, proof in black and white that they have it all wrong !!

Hope they can sort your eyes out soon, good luck with the Endo.

I have to get my head in gear to make a mountain of eton mess today, eldest daughter and friend are having a joint birthday bash tonight, well over 100 people for hog roast, they have been planning it for over a year so hopefully it all goes well and it doesn't rain as it's in a field on friends farm !

Nelly xx

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Re: Long time away

Post by Admin on Sat Jul 09, 2016 10:09 am

I have been trying to come-up with an analogy to bring home the stupidity of the mistaken belief that TSH can be relied upon to provide meaningful information, so here is my current view:

The throttle pedal in your car is used to instruct the engine to increase or decrease the RPM (revolutions per minute) to control the speed of the car (but only when the engine is working properly).

TSH is an instruction from the pituitary gland to the thyroid gland to increase or decrease its output (but only when the thyroid eco-system is working properly).

So, what does this mean?
Well, can the position of the throttle pedal tell you how fast you are driving?  Of course not.  It is simply an instruction to the engine increase or decrease speed.
Can TSH give you an absolute value of the thyroid hormone (T4 and T3) levels from the thyroid gland or tell you if your tissues are receiving and absorbing sufficient T3?  Of course not.  It is simply an instruction to the thyroid gland to increase or decrease output.

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Re: Long time away

Post by Amanda123 on Mon Jul 11, 2016 12:39 pm

Hi Nelly & Edwin
Hope the party went brilliantly, looooooove a hog roast and Eton mess yum.
I would be interested to see the studies about TSH etc.
Edwin your analogy makes perfect sense to me, its a shame the drs are so blinkered.
Amanda xxxx

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Re: Long time away

Post by Hadleigh on Mon Jul 11, 2016 2:20 pm

Hi Amanda

The party was a great success and hog roast was yummy, 2 giant bowls of eton mess didn't last long ! just as well there were other naughty puds available !

The latest study isn't published yet, the scientist who co wrote it is a member on thyroid UK forum so we get info before it goes out, as far as I can make out they have found that everyone has their own set point with hormones, vits and minerals so using the ranges is useless unless individuals know what their levels were when they were healthy, which the majority of us won't. Edwin is the one for studies so he can no doubt find you some reading material.

Flipping raining again, luckily only short showers but our chicks and ducklings are not enjoying it, the ducklings have just about plucked up the courage to come out their house but they scoot back in as soon as the rain starts

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Re: Long time away

Post by Amanda123 on Tue Jul 12, 2016 12:02 pm

I sounds like heaven, chicks & ducklings awwwwww so cute. I hope the weather gets better for them.
That study really sounds groundbreaking, I wonder how long it will be before it filters down to the DRs !!!!
Latest symptom (I wish I didn't keep getting something new) a type of vertigo last couple of nights when I've got up to have a wee my balance is all ove the place feel like I'm being pulled sideways. It goes by morning, not sure what that's all about, hope it goes away.
Amanda xxxx

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Re: Long time away

Post by Hadleigh on Tue Jul 12, 2016 4:54 pm

I get vertigo and have terrible balance problems, can be an inner ear issue like labyrinthitis which i have had twice but it's also yet another hypo symptom, sorry to bang on about it but it really does effect every single cell in the body, I upped my Levo a couple of months ago and after many months of dodgy balance and dizziness I'm 99.9% better.

No rain today so the ducklings have been out more, will try to get a pic of them to post, sadly they don't stay cute babies for long.

Nelly

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Re: Long time away

Post by Amanda123 on Wed Jul 13, 2016 12:34 pm

Hi Nelly
If when I see Endo tomorrow she says I do have thyroid problems, I know it sounds wrong but I will be so relieved, otherwise I have an even worse problem trying to find out what connects all the inflammation going on in my body. Especially as nothing is showing on Rheumy's blood tests.

I'm glad the dodgy balance got better for you, it's really horrible. I'd love to see some pictures of the ducklings and chicks.

Amanda xxxx

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Re: Long time away

Post by Tigerlily on Wed Jul 13, 2016 12:35 pm

Hi All on this string - sorry to have been away so long myself - multiple bone issues to deal with.

So pleased to see that Nelly and Edwin are still here with their invaluable advice and experience, that Audrey is still hanging on in there, but sorry to hear that Amanda you are still struggling.

Don't know why, Amanda, but I always had a feeling that your FHH test was a false positive, for some reason. Is there any way that could be so? Can't remember whether or not you ended up seeing someone with experience in calcium metabolism? 

We never dusted off the kit for The Ritz either, did we? I've felt enormously better since FP removed what he described as 3 hyperplastic PTH glands, but the bone problems I've since have been quite amazing. Osteophytes have grown on the top of both my feet causing me to have to wear Mary-Jane type shoes (not a good Ritz-y look ...), I've developed Golfer's elbow without ever having played a round (probably all that web research has knackered my right arm ...), carpal tunnel in both wrists, a contracture in my left little finger and two lumps under both thumbs causing - hi Nelly! - trigger thumb in my right hand (feels as though it won't come back once the top joint bends towards my palm - worse in the mornings but eases off a bit during the day). Also (sorry - it goes on - and might be PTH-related - anyone any experience of this??) both knees find it difficult to go upstairs now; I seem to have lost discs between L4/5 and L5/6 (but I did have an op to decrompress one of these in 1997, and once you tangle with one spinal area .....), discs have dehydrated between C5/6 and C6/7, and I have osteophytes and subchondral bone cysts across my front cervical area and at C5/6 and C6/7 (nearly finished), a sterno-clavicular joint degeneration and the same at the acromio-clavicular joint.

I'm a right pain the the moment, but luckily it doesn't all hurt at once! I get phases when it's the shoulders, and then perhaps the arms and back. I've gone back to my old chiropractor and am getting well and truly done over once a week which is helping enormously, so it's not all bad.

It seems that Fuller Albright did a lot of PTH research in the 1940's and 50's, and he seems to imply that when the calcium levels fall back to normal after PTH surgery, it all seems to go into overdrive with the bone formation, so this seems to be what is going on. If anyone else has any experience of this I'd be glad to hear their comments.

In addition to this, Addenbrookes are still telling me that I had secondary PTH due to Vit D deficiency - despite a very polite but firm letter to the contrary (underlining it was primiary HPT, however biochemically mild it might have sseemed) from FP to all concerned. It takes me weeks to craft an unemotional letter under these circumstances, but I have done it (4 pages) today and sent it to Addenbrookes, so we shall see what they come up with next!!

It shouldn't matter really, as it is all academic now, but I got very short shrift when I asked for a second opinion at our local hospital (because they sat behind Addenbrookes' diagnosis of 2e due to Vit D def), and no-one would take me on again as a patient at my local hospital when my GP asked for an endo there to see me recently. I've had to find another endo at Ipswich to monitor my thyroid issues - but luckily he seems to know about pHPT and knows FP. To be continued ........

I had a mail from Jasmine recently and she is feeling really tremendously well, bless her. I hope she won't mind me telling you all. I am so pleased for her.

So Amanda - do keep us posted on your appointment this week as I'd be really interested to see how things pan out for you. So sorry you are so unwell with it all.

Nelly and Edwin - glad the party went well and you are having some respite from the symptoms occasionally. Love-a-duck for me and enjoy the summer.

Much Love to All from Tigerlily xxxx

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Re: Long time away

Post by Hadleigh on Wed Jul 13, 2016 2:22 pm

Hi Tigerlily

I am getting lots of bone aches as well, quick onset of arthritis in my fingers, dodgy wrists, elbows, knees and hips. I had a steroid injection in my trigger thumb this morning, the one I had in the thumb joint 2 weeks ago hasn't done much at all so if this doesn't work doc will refer me to orthopaedics again, I can have the tendon release op for the triggering but the worn out joint is more tricky. I do Pilate's every week which has definitely helped a lot, keeps me flexible and I have much more range in movements, even my chiropractor was impressed !

I have wondered if all these boney issues are calcium and/or osteopaenia related, I guess the damage is done so we just have to manage the fallout as best we can, it is soooooooo difficult having a bum right thumb though, good reason to give up work although it's proving difficult to actually achieve it !

Great to hear Jasmine is doing really well, give her our love next time you chat.

Hope you improve in time but it seems we cure one thing and something else comes along, not fun but on we plod.

Off to buy a big duck house now, little whatnots are growing so fast, their main aim everyday is to make as much mess as they can in the run then trash their house, love em

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Re: Long time away

Post by Amanda123 on Wed Jul 27, 2016 9:52 am

Hi Tigerlily
Unfortunately the FHH diagnosis stands as my twin sister has it as well.
Appt at Endo was interesting !!!! I haven't got blood results but she is posting everything to me, she says they are well within range she did tell me them but I didn't write them down and as soon as she said them I forgot them arrrrgh. I will post it all when letter comes through. She was however much less dismissal of my symptoms and seems to be now genuinely listening to whats wrong (it's taken long enough). She did a load more tests including inflammatory markers (Rheumy has done these loads of times) and also chest x-ray to check for sarcodosis. She has suggested that I might wan't to ask for a second opinion Rheumy wise !!!!! 
I am having a pelvic and kidney US on Monday as I've had so much pain in my abdomen and showing white cells in urine but no infection and GP thinks it could be a stone or pelvic inflammation.
I honestly feel like c@%p so any investigations are welcome.
My feet are so painful and right side second toe agony when I walk.
Nelly your ducklings sound gorgeous and a big duck house is intriguing how big ?????
Love to all, I'll post more when I know more, Amanda xxxx

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Re: Long time away

Post by Hadleigh on Wed Jul 27, 2016 3:31 pm

Hi Amanda

Good the Endo is listening, it's a start. Do post results when you get them. I'm having what I think are thyroid prob so I'm going to try a bit of T3 to see if it helps, well I will if I can pluck up the courage !

Sounds like lots of tests for you but as you say it's all good if it solves the issues in the end. If the US shows stones do ask for a CT to determine where they are, I went through all the Lithotripsy only to find it would never have worked as the stones were not where the US showed them !

The ducklings are growing really fast, I'm debating getting them 2 friends but they are so happy I don't want to upset things, will see how we go, I'll get Mr Techy to post a pic. Latest addition I hope will be 2 sheep, well they are 5 month old lambs but very chunky, sadly they won't be living here, they will reside in daughters paddocks in Devon and hopefully have lambies next year :-) Think we need to buy a farm !!!

Take care and keep us posted.

Nelly x

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Re: Long time away

Post by Amanda123 on Wed Jul 27, 2016 3:58 pm

Hi Nelly
Thanks I will let you know.
Lambs sound gorgeous  Very Happy

Amanda xxxx

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Re: Long time away

Post by Tigerlily on Wed Jul 27, 2016 4:20 pm

Hi Amanda & Nelly and Edwin and Audrey

So glad, Amanda, that they are taking you seriously and you are getting some investigations done.

I was just reading this paper: Diagnosis of Asymptomatic Primary Hyperparathyroidism: Proceedings of the Fourth International Workshop (just google that title if the link below does not work - then select the .PDF option):

http://press.endocrine.org/doi/pdf/10.1210/jc.2014-1414

It caught my eye because the last-named contributor is Rajesh V. Thakker whose name comes up quite often in connection with pHPT in all its manifestations. He works out of the Radcliffe Dept of Medicine at the University of Oxford.

It would appear from this paper that that primary HPT can coexist with FHH:

" Rarely, coexistence of FHH1 and PHPT may be found in a small number of PHPT patients, and it is interesting to note that despite having a CASR mutation, parathyroidectomy in these patients resulted in a reduction of the hypercalcemia or normalisation of the serum calcium concentrations. "

Amanda - I saw this and thought of you!  Could this be your situation, I wonder? You do seem to have so many of the symptoms that I had prior to surgery. Make sure they check you out for ovarian cysts when you have the ultrasound - god forbid that you have any/one but a number of forum members have had them alongside their PTH issues. I had a large one removed in March, with no complications, but it had twisted on its ligament so was only a matter of time before it caused problems. I'm thinking here of your abdo pain. I also had a kidney "cyst" that keep showing up on US but not on CT, so they reckon it's not a stone.

My feet have also been a problem with bone growths appearing on the top of both of them, plus two Morton's neuroma. It all sounds very much like your problems - agony on walking was due to the two neuroma with me. I still have them, but stouter Mary-Jane-type shoes have helped when walking longer distances (rather than the soft slouchy thin-soled ballerinas I lived in).

Do let us know your results when you have them. Hang on in there, girl.

Nelly - so glad to hear of the pleasure you get from the ducks and the possibility of lambs! Hope you and Edwin are both doing well.

Love from Tigerlily xxxx

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Re: Long time away

Post by Admin on Wed Jul 27, 2016 6:09 pm

Here is a very good read for anyone who is not getting recognition of their Hypothyroid symptoms, or getting inadequate treatment:

https://healthunlocked.com/api/redirect?url=http%3A%2F%2Fwww.thyroiduk.org.uk%2Ftuk%2FTUK_PDFs%2Fdiagnosis_and_treatment_of_hypothyroidism_issue_1.pdf

It just shows the inadequacy of the BTF guidelines that so many docs and endos believe in.

Edwin

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Re: Long time away

Post by Amanda123 on Wed Aug 31, 2016 12:48 pm

Hi All
Thanks for all the suggestions, I'm still none the wiser but the situation at present is.
I'm seeing Western Eye Hospital friday re inflamed eyes. I've had MRI of head, not really the most pleasant of experiences ! they are querying thyroid eye and other inflammatory disorders.
I now have persistent microscopic blood in urine and pain and GP was most keen to point out it could be bladder cancer, I've seen Urologist who was not particularly pleasant and said it's either nothing just you or bladder cancer, I asked if it could be inflammatory based due to eyes and feet/legs/hips etc etc but he wouldn't really answer, so I've got US kidney/bladder today and cystoscopy  on Monday.
I also have high cholesterol 8 and despite GP insisting I take statins, I have tried but they cause terrible reflux and the bladder pain started when I started taking them, I can't bear to take them. So she wasn't happy and told me I could well have heart attack or stroke, so I'm being referred to lipid clinic !!!!!!!
I am seeing a Private rheumy for an assessment to see if there's more to the inflammatory stuff than is being done (basically nothing my rheumy last said lets wait to see what symptom comes next it might make diagnosis possible, then signed me off for 9 mths). Endo actually said to consider 2nd opinion so I will see him 13th after Eye Hospital to see if they have decision which would be useful. I still haven't had letter from her with blood results so I'm chasing her today.
So that is basically my story up to date.
Nelly the ducks are lovely and lambs sound perfect. Hope everyone is better than when I last posted !!!!! it would be great to hear if someone is doing well.
Love Amanda xxxx

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Re: Long time away

Post by Amanda123 on Wed Aug 31, 2016 1:02 pm

Found last bloods done not endo ones but GP 28/7/16
TSH 2.63 range 0.34-5.60
FT4 7.9 range 7.50-21.10
Feb 16 PTH 4 range 1.60-9.30 adj calcium 2.66 range 2.20-2.60

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Re: Long time away

Post by Hadleigh on Wed Aug 31, 2016 1:39 pm

Oh dear Amanda so much going on for you and very frustrating that it's taking time for docs to sort it all out.
I know you know but I'll say it anyway, your TSH is to high and your t4 way to low, shame there is no t3 result but I would expect it to be low, high cholesterol is common with untreated hypothyroidism.

Definitely get a second opinion if you have the chance, I'm thinking of going down that route with my Gastro, he has lost interest in my 10 year history of whacky liver function but I want to know what's going on.

I'm getting bad joint and muscle pains now, particularly my hands and legs, no point in going to the GP as it will be "well what do you expect at your age " !!

Hope the scans and cysto go ok, do let us know how you get on.

Love Nelly x

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Re: Long time away

Post by Amanda123 on Thu Sep 01, 2016 5:15 pm

Hi Nelly
Had x-ray of kidney & bladder and US, nothing much was said despite me asking but US showed large cyst on right kidney !
This is the side all the pain is on so I'm not sure if that could be responsible.
I'll keep you posted after cysto.

Love Amanda xxxx

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Re: Long time away

Post by Hadleigh on Thu Sep 01, 2016 6:48 pm

Snap, I have 1 or maybe 2 cysts on right kidney, I think it depends on location as to causing problems or not, the nice urologist at Exeter said my cyst and stones where in a position that shouldn't be a problem, what I failed to ask her was what happens if they keep growing ! exploding kidney maybe !
Good luck with the cysto, I don't fancy that at all but a friend had one recently and she said it was over before she knew it had begun, no pain no nothing, fingers x it's the same for you.

Love Nelly x

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Re: Long time away

Post by Amanda123 on Tue Sep 06, 2016 11:56 am

Well that was fun !!!!!
Apparently the one size fits all cystoscope is wrong  Shocked I won't explain further but not fun.
Apart from that obvious problem it was showing I am retaining urine and also have a very clear area of inflammation.
So when the scope was finished I sat down to discuss what happens next only to be told, well we've found why you have blood in urine so I'm referring you back to your GP !!!!!
After much discussion (which was difficult as his English wasn't the best) he reluctantly said oh ok I'll put you down for a clinic appt in 3 months.
Am I wrong or should I have been seen by the Consultant who ordered the scope as there were obvious problems or is it policy just to identify what is causing the initial query and then refer back to GP to start the whole process again.
I told him I was in pain with this but it made no difference.
Confused fed up and angry xxxx

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Re: Long time away

Post by Hadleigh on Tue Sep 06, 2016 1:44 pm

Ouch poor you, I will definitely avoid one !

I would expect to see the consultant afterwards but my experience with urology is that they are totally disinterested and don't give a toss, although the lady I saw at Exeter was a bit more helpful, after my CT she just wrote to me saying what they found and that was it, no clue as to what might happen in the future or what I should look out for symptoms wise, left me knowing I have problems with stones and cysts but no plan of action. A friend who was under urology at a different hospital found it much the same.

I guess you need to see what your GP can do for you, anything like mine nothing much !

Nelly x

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