Appointment for Hammersmith!

A letter arrived this morning from Hammersmith saying I have an appointment for the 11th of November.  I am so relieved as I was beginning to think they had forgotten me or the referral had got lost.  It will be with Mr Palazzo's team and I am really happy that it is not a long wait!  I really hope that things will now move forward.

Yesterday I had my gastro appt at the local Ramsey healthcare centre that do work for the NHS........ What a difference!  My appt was 3.30, the consultant very pleasant and advised that I do need to have a gastroscopy, explained the procedure and I can have medazolam to sedate.  This morning, along with my Hammersmith letter was a second letter giving me my gastroscopy date for 12th December, typed up and mailed at teatime yesterday!  Now that is fast!
Sue x

I'm so glad, Sue   Finally, it looks like things are starting to move in the right direction for you, which must be a relief. 

Sending you some big cyber hugs! 

Love 

Brigitte xxxx

Great Sue, its all systems go now

Well done Sue. 
Great that they are both so soon.
Love Amanda xxxx

Oh Sue, such good news after so long in the Limboland Cafe! It's like waiting for a flippin' bus, you wait forever at the bus stop then two come along at once! All systems go.......at last! 

Jasmine x

Great news, Sue - just so pleased for you!

When my Hammersmith letter said "FP's team" it was actually with FP himself, so be prepared for that.

Adios Limbo Land Café for you - and The Ritz beckons!

Love from Tigerlily xxxx

GREAT news, Sue!! Everything is moving right along for you. It won't be long now! November 11th is not far off at all. So happy for you!

Thank you everyone for all your well wishes and support.  I am not sure how all this will go and I still think the FHH hat has not been completely flattened.  It is not  helping my anxiety levels and I suspect  I will have to do the urine test yet again.  I am going to get my bloods done today so I have an up to date set to take with me.  I still think the road is full of potholes but at least it is progress at long last.  I try and stay positive but some days it is really hard, I do a good Eleanor Rigby, my face in a jar by the door, I suspect we are all experts in that as well
Thanks everyone, without this group I would be fobbed off by ENT and left to languish.
Hugs Sue

Hi Sue,

I am soooo very pleased for you, now all you have to do is stay strong and slowly climb that ladder to good health. 

Love and best wishes

Diana
xx

Just a thought, Sue, but do you have time between now and 12th Nov to do another urine calcium test so you have the results available for your appointment with FP? Might save some time further along the line.

Love from Tigerlily xxxx

Great news Sue not too much longer to wait.

I`m having a gastroscopy and a flexible sigmoidoscopy on Tuesday which I`m a bit nervous about. 

On Friday next week I`m traveling to Liverpool for a second opinion with regards to HPTH as my local endo has said I've got a vit d issue.  I've collected my latest blood results today and I think he may agree. I've carried on with 1600 units of vit d, PTH 44 (range 15-65), calcium 2.55 (2.20 - 2.60) vit D 57 (50 - 144) phosphate 0.73 (0.8 - 1.5). Oh dear it might be wait and see appointment. 

Take care everyone x 

Date	PTH (15-65)	Corr. Cal. (2.2-2.6)	Vit D (50-144)	Phosphate (0.8-1.5)
20.01.14	Not done	2.66	Not done	Not done
23.01.14	81	2.62	35	0.83
20.03.14	54	2.65	32	0.64
31.05.14	Not done	2.56	37	Not done
10.06.14	53	2.58	47	0.62
06.08.14	63	2.50	66	0.77
15.09.14	37	2.59	61	Not done
30.10.14	44	2.55	57	0.73

Hi Mel,
Just thinking about you and hoping everything went well on Tuesday for your gastroscopy etc, it can't be much fun.  Hoping you feel a lot better now they are done.
Take care, Sue

Good luck, Mel, with your appointment tomorrow!

We'll be thinking of you - let us know how it goes when you've "landed".

Love from Tigerlily xxx

Thanks Sue very pleased the gastroscopy and flexible sigmoidoscopy are over quite an ordeal.  The doctor took some biopsies and said at present the ulcerative colitis is inactive which is a relief to hear.

Thanks Tigerlily for the good luck message.  I haven't digested everything that was said today, but basically I will be having more blood tests over the next couple of months.  A letter will be sent to my endo and gp to up my vit d, I`m taking 1600 units daily and my vit d levels need to get to around 100 so some way to go.  My PTH and calcium will then be reviewed again.  

When i got home from the appointment my ultrasound scan report that I`ve been asking for since August was on the door mat. I wanted to take it with me today but never mind.  The report says:

"There are a couple of tiny low echogenicity nodules lying caudal to the lower pole of the left lobe of thyroid.  The larger of these only measures 4 x 3 cm axially.  They are likely to be tiny benign lymph nodes, but the larger may conceivably be a tiny parathyroid adenoma.  This is certainly not convincing enough to warrant surgical exploration on the evidence of ultrasound and sestamibi scans combined.  However, it would be an area I would review carefully in future if hyperparathyroidism persists and becomes biochemically more severe". 

Do you think it should be mm not cm as this seems large and they are referring to it as tiny?  Its a shame this was not posted sooner despite my efforts but I will email it on. 

I will get up to date with the latest posts this weekend, but I hope everyone has a lovely restful weekend.  

Thanks 

Mel

Mel are you taking meds to keep your UC in remission ? I have been on Asacol for 17 years and haven't has any major flares.

I would think it should be mm if they are saying it is tiny.

Nelly

Hi Mel - glad you are back safe and sound with it all over for a while.

I agree with Nelly about it being mm, but I would contact whoever wrote the report to ask the question, as it's an important error of size that has been made there.

It's good that they plan to give you more blood tests regularly and "review carefully in future" if your high PTH levels persist.

All in all, a good result, Mel. Rest up for a while now and enjoy a good weekend.

Love from Tigerlily xxxx

I had bloods taken a week ago so that I would have a current set to take with me to my appt next week and picked them up today.  I am still taking low dose Vit D and now it has increased into the normal range at long last.  My phosphates seem to want to go higher, a few years ago they were low in range, now just keep creeping up.  There was a comment by the consultant chemist on my lab report as well which makes me think they are fed up of testing my bloods!  It kinda reads for goodness sake, this poor old crock has got PHPT, stop messing around and sending samples and get on with sorting her out.
Vit D 75
Adjusted calcium 2.73  range 2.2 - 2.6
Serum alkaline phosphatase level 64 U/L range 30.0 - 130.0
Serum inorganic phosphate level 1.23 range 0.8 - 1.5
PTH 4.1 range 1.5 - 6.9

Then it says PTH level is inappropriately normal for serum calcium, which would be consistent with primary hyperparathyroidism.  Note that patient had a fasting calcium and 24 hr urine calcium excretion done in September, which with a ratio of 0.0127 would exclude FBH.
Signed consultant Biochemist.

I wish they would keep to the same PTH test system or maybe it is how they record the results??  My last one had a different range and was 53.72 I think?  Makes it hard to compare and this system always gives me a lower PTH.
Sue

Never mind, Sue - an adjusted Ca of 2.73 with a PTH of 4.1 is totally indicative of primary hyperparathyroidism!
 
That's just what FP says about this type of Ca/PTH level combination, i.e. the PTH being inappropriately within the normal range, rather than being completely undetectable (he calls it "inappropriately un-supressed").

That is a super set of bloods to take to FP on 11 November - diagnosed by the Consultant Biochemist, no less - he is a valuable asset to your local hospital - at least he can see the relevance of these bloods!

Great news, Sue - I'm sure you have turned a corner here and will be with us all at The Ritz when we're "fixed"! 

Love from Tigerlily xxxx

Wow Nelly 17 years is amazing not to have a major flare up. I used Prednislone when diagnosed in Jan but changed to Mesalazine / Salofolk after Oestopenia was diagnosed. I have had two flare ups but I hope it will now settle down. x 

Hi everyone,
I didn't post about my appointment last night as was too tired and upset to think straight.  It was a long day, very early start to get to the Hammersmith for 11am, we trained it down from Peterborough and arrived just before my time to find the clinic was running over 70 minutes late.  I saw Mr P and basically he said nothing has changed since he saw me in May.  I then gave him my latest blood tests and 24 hr urine results that I did at the beginning of Sept and despite wht the biochemist here said he still did not like my results.  He explained that a level below 0.01 is definitely FHH and a level above 0.02 is definitely PHPT.  I am in the grey area between with a level of 0.0127  and so he talked about redoing the 24 hr irine then scrapped that and said ,we need to do the genetic test.  So I was sent for bloods and we waited another hour, I sat there weeping and blubbing and thoroughly miserable.  I have a return appointment for the result on the 3rd Feb, just a few days before I am supposed to be flying out for my son's wedding in the Phillipines.  She took loads and I think my left arm is now much thinner!  We left about 1.45 and so was too late to meet my daughter for lunch as arranged.  We then went to see the poppies at the Tower of London, beautiful and moving but so crowded, then walked all the way back on the south bank to Picadilly and met her for an early dinner instead.  This awful panic about going on a long flight is really stressing me, especially if I get bad news just before with this test result.  I know it has to be done to see if the FHH hat really fits but I just feel I am losing it, I sat and wept in the restaurant, I sat and wept on the train home and I wept even more in the car.  So that was my pity party, OH getting more annoyed at me because he can't fix me.  I slept poorly and feel worn out, my toes and upper jaw were really aching in the night.  Sooo now to pick myself up again, keep calm and carry on as they say.  Now sitting back in cafe limbo with the 3 month wait.  
Take care everyone and hope you have a better day.
Hugs Sue

Sue, I'm sorry you had a bad day, but I would look upon it as a cautious approach from FP and not the end of the world just yet. My urine calcium was also low and I had an adenoma. It does seem that your PTH is inappropriately normal for your calcium, did he address that or was it all about the urine calcium? In the long run, it is more likely that FP is dotting the i's and crossing the t's and approaching your case in his logical way and he feels that the right thing to do is to rule out FHH. Don't give up, though I realise you must be terribly upset. Sending you loads of hugs and support. 

Take care and keep on keeping on. 

Love and hugs 

Brigitte xxxx

Sue, I feel for you and really do understand as I've walked in your shoes - literally - having made the trip to the Hammersmith from Peterborough! Mine was the trip from hell .... did you go via the Underground? We did and when I do it again for venous sampling soon I'll be taxi-ing it from Kings Cross and back. All the walking just about killed me and I felt ill and exhausted for days after, so I can only imagine how it was for you as you packed so much more into your day.

I agree with Brigitte, Mr P is extremely methodical with a 'belt and braces' approach and he did exactly the same with me; he was quite certain that, even despite my biochemistry and symptoms, due to my low calcium:creatinine ratio (which was 0.005!) I had FHH and would go no further without the genetic test - which was negative! So try and take some reassurance from my story Sue, yes the three months waiting around in limbo is almost unbearable but as I've proved, FHH is NOT a foregone conclusion even with low urine calcium and UCCR. 

Sending love and big hugs

Jasmine x

Hi Sue 
I'm sorry you had such a long drawn out and stressful day. I'm also sorry that you are having to wait for the results of the Genetic test, it does seem to take forever.
I'm sure you don't have FHH, the experts say it's such a rare disease and I'm certain that I drew that short straw and if it means that because of that the odds against another person on this forum having FHH then that's life.
I'm keeping all my fingers X'd that it will come back negative for you and you get the cure you deserve.
Sending you love n hugs Amanda xxxx

Hi Sue

I am sorry that your at the limboland café with so many of us. I am impressed that he sent you for the genetic test right that day. That would never happen in the USA. Sometimes the wheels in the UK are faster then the US. I sat around for 6 mouths doing nothing but waiting to go see the endo again. Genetic testing is pricey in the US and some insurances don't want to pay. I wish endo would have sent me for the fhh test while I was just sitting around doing nothing. Just rule it in or rule it out. He hasn't mentioned that in the last few visits but I actually would of liked to have it done.
    Hugs Kathi

Thank you to Brigitte, Jasmine, Amanda and Kathi,
I know you are all right and it is the next step, but I just find it all painfully slow and frustrating and like all of us I want my life back whilst there is still some life left in me to do stuff!  In looking at FHH I have come across references to an acquired form which seems to be triggered by auto immune disease and the calcium receptors being partially inactivated by the antibodies.  I actually would find that much easier to believe than this "you were born with it" as there is nothing that I am aware of in my family.  It is even rarer than FHH but it does concern me.  I may be joining you yet Amanda, I am just going to have to be patient.
Thanks for all your kind comments,  they do help so much in coping with all this.
Hugs to you all, Sue x