24/7

I think you need to be an annoying patient.  Ring them every Tuesday at 9.30am or something.  Ask for a copy of all letters and results and if not ask your GP for a copy of what they get.  All results should be sent to them otherwise should something happen, they may not know where you are with treatments.  

Incidentally, you need to take methylfolate, not folic acid, it's much easier absorbed and better for you.  Also take K2 (mk7) with your Vit D and it will go to the bones and not elsewhere in the body.  

I take Jarrows Methylcobalamin 5,000 sublingual, 1 per day.  

Hi all,

Mulled wine and mince pies in the kitchen to get you into the Christmas spirit.

Sorry I've been missing for a while. 4 weeks in New Zealand, and then a week or so of jet lag. I had a fantastic time in a very beautiful country. I have loads of photos, will try and add a couple in a minute.

On top of all that travelling just before I went away I met someone new. So I've also been getting to know him, and planning a future together. 

Oh, and also Christmas presents to buy, cards to write.......there never is any spare time!

What is everyone else up to?

Milford sound   

Lake Ohoa

Auckland

Hi Lakeslover,

New Zealand looks amazing You must have had a fabulous time and your home in time for Christmas with your new love. Sounds like next year will be a good one with lots to look forward to.

I am chilling out just now having had a busy day with a hospital appointment and more Christmas shopping. At least the shopping is almost done and most of the presents have been bought now. 

I shall now enjoy one of these yummy looking mince pies.

Maggie x 

So happy for you Lynda, must try and meet up if you would like to. x

Hi Hazel,

Yes, it would be great to meet again.

Looks fab, Lynda! Did your captain turn off the engines in Milford Sound so you could hear the silence?  Just birds and the odd dolphin splashing!  Was fab. 

Glad you enjoyed it and brilliant news that you have met someone, hope it goes well for you!

mistymoley

- I think the  Jarrows  sublingual is the B12 I  take; plus their B-complex too, each morning; then a multi vit, and 3000 vit C, a bit later in the day; then the calcium and Vit D, in the evening... - I still need to get hold of some decent magnesium and the K2, which I must try order from online soon; and once I've got those (hopeing can get a magnesium that is good, combined with Zinc, to avoid tablet overload!) - after that I want to look at my iron, as I know that was a little on the low side too, so then I'll get a decent iron suppliment to take with Vitamine C to aid absorption.....

I think I have succeded in being an annoying patient!; for now; finally got a reply today, from the endocrine Sec, to a .... somwhat nasty E-mail I sent them; putting out all the points they refuse to address/treat, and theatening my next course of action being one of a legal nature, and official complaint through the hospital- it got a response.... and they've more or less addressed all issues; but it took a threatening letter like that, to get them to;

Agree to a bone density scan (all UK, European and worldwide guidelines say this is necessary, not an extra, for patients on long term replacement steroids).
They have revealed to me my thyroid results; and said I can now start growth hormone replacement (but, why were they not willing to tell me this until I wrote them the letter?)
They've said the ECG came out fine; but are ordering a electrocardiogram (the ultrasound I think that is), anyhow, - nice, a bit over-kill to rule out heart problems, but I'm rather happy by this.

They've basically addressed everything, and for now, placated me enough that I'm not putting in a complaint.

But. - like I've energy to spare to do this every time post-clinic appointment, just to get them to give me my results? - I really have so little energy, I dont' get out of the house most days now, until 10 at night, when the effects of the medication wear off; that, the weird repsonse I have to medication, they still don't seem to be addressing.... but... I've got somewhere, at last, it seems....

The growth hormone may  make a big difference; it does in some patients... Though not in all patients... - my levels of GH were basically nil according to the dynamic test I had done (glucogen stimulation test); so I'm certainly in the 'group' of patients, who are most likely to see a marked improvement on treatment.... - I do hope so, its my last chance, just about (as goes NHS treatment) - there are a couple of other hormones, oxitosin (sp?) and dehydroepitestosterone (DHEA), that NhS don't replace, but many patients fund that themselves, and source from EU or overseas elsewhere, so that is somthing I'll consider after a period on the growth hormone, whatever the effect of the GH is....

 



Lakeslover, -  New Zealand sounds fantastic!; My female partner in Sweden, went there, last year, and had a fabulus time too (and I've got a jade pendant  she bought me from there too!). OO; great news on the meeting someone new, hope your having a fantasitc time, getting to know each other.

Christmas!- we're doing very little here; a handful of cards to write (today), and send off, and then I've only a few presents left to buy; and as its just W and me, we're doing a very stress free christmas at home; mainly we plan to stock up with decent cheeses and cooked meats, and, well, as its only the two of us, we're neither bothered by the OTT all the trimmings Christmas meal, so that is one big hastle saved!- I hope to think of something a bit special to cook, Christmas day though... not quite sure what yet...

Hopeing I may get to see  my Dad, and Brother before Christmas, but it seems unlikely unless they visit me, as I dont' think I could really handle travel much at the moment; and I know the rail links back to my Dad's are all messed up over Christmas due to rail track repairs happening....

hope everyone else is OK?