24/7

Just popped in to say hello

xx

Hi Carol,

Lovely to see you popping back to keep an eye on us all and thanks for the bacon and crispy rolls you left for breakfast.

Hope you and your family are doing ok

Hugs, G n' J

Hi Carol,

Good to see you. Hope all is well in your world.

I'm now back from New Zealand. I had a fantastic time touring both islands.it is a very beautiful country. I'm not so keen on the earthquakes though....we were right in the middle of the big one.

Now to tackle the washing......

Hi Carol, 

Good to see you popping in....

Hi Lynda, 

Glad to know you're safe, shaken not stirred, eh? Hope the washing is easy to get dry in this late autumn/going on winter! 

Popped some croissants by the coffee machine....

Hugs xxx

Hi Carol, welcome back Lynda. 

I have a story about earthquakes, we were on holiday in Crete. It was early in the morning. My husband had gone to the shop for supplies.The kids were 2 and 3, and I thought they were jumping on their beds and I went to tell them to stop, then realised it was an earthquake! grabbed some clothes and ran outside until it stopped! 

Hi, Carol, hope all is going well, or as well as it can be.

Linda!; so envious of your trip away! - I can't rely on my day to day health enough anymore to travel anywhere, let alone abroad, a pity, as it was about this time last year, I bought my tickets, before I flew off over Christmas by myself, to visit my  female friend in Sweden. =- Hope I can get fit enough and consistantly well enough to be able to travel again soon; at the moment I don't think I could even risk a train trip an hour or two away, to see my family.

Some progress though; have played about with my meds, and found an odd thing, where if I take the steroids a minute before I eat food, rather than one minute after I eat, my reaction to them, is entirely differnt. - Also tollerating the thyroid meds better since I switche off the brands that I reacted too so badly; Just a hastle sometimes getting the pharmacy to consistantly provide the correct brand I can tollerate.
About to get on the phone later today, and hastle the hospital, been waiting two weeks now, for a letter from endocrinology, with results of my latest heart ECG, kidney function test, and for thyroid results, as they were talking of increasing my dose; Also waiting for the thyroid levels to get high enough so I can start the human growth hormone; I've three boxes of growth  hormone, about £1000 worth, sitting in the fridge, maturing, waiting for me to be able to start injecting it each day, and the growth hormone nurse, is still awaiting my phonecall so she can come round and teach me how to self-inject.
Also must hastle endocrinology to do a blood test on my testosterone and leutinising hormone levels, as I'm fairly convinced I'm producing my own testosterone again, only the Drs refuse to believe me, and their idea is I just keep having intermuscular testosteorne injections, even though I probably don't need them. - I really can't understand their attitube soemtimes, I think the testosterone injection is a couple hundred quid a time, if nothing else, just a waiste of money if I don't need it; and 'natural testosterone', makes me feel a lot better than the random injections that wear off and make my levels shoot high then low and affects my energy levels so much, etc.

As a last resort, if they won't measure my levels before my next injection on the 23Rd December, I'll turn up, for the injection, let them take bloods, to measure the LH and T levels, then just refuse the IM injection, if they won't play sensibably then I won't either anymore, I can't handle being treated so badly when I'm already feeling so ill.

Having said which, been feeling a lot better the past few days; trying to figure out why the only thing I've changed is that I've started taking sublingual B12 capsules, so maybe they are helping (so much for 'being in normal range', I'm starting to believe all these 'normal ranges' for things like vitamines etc, are pretty meaningless).

Hope everyone else is OK, - we've got some loverly sunshine here today, although the local newspaper is promising... threatening a cold snap; going to get outside whilst the sun is out, - its cheaper than the Holland and barret vitamine D capsules!

Gosh, Mark, never ever ever take "normal levels" as Gospel! B12 should be around 1000 and if low in range you will struggle to convert the levothyroxine. Your folate should also be high, Vit D as well, and ferritin between 70 and 90. If any of these are out of balance then you will not convert efficiently. 

Hi Helen,

thank you for posting these levels, I'll take a note and check that daughter has good enough ranges of all! 

Hugs xxx

Hi; yes I know.



But the hospital won't measure my levels, or at least if they do, I don't get told what they are; I don't really want to replace stuff unecessary, and give myself more diarrhea, and potential side effects. so
Currently I'm on the B12 sublingual 1000 MG  X 2 a day, vitamine D3 and calcium (to try and stop my bones being ripped out of my body by the steroids), and hopefully magnesium too soon, if I can find anywhere that sells a decent version of the magnesium (H&B in town, and Boots don't have anything except the magnesium citrate which I won't take as its useless). - But without Drs measuring my levels I don't really like tampering with it too much, B is fine, as its water soluable, too much calcium can increase risk of heart disease, and D is fat soluable so can accumulate in the body and one can over-dose on having too high levels.

I was on folic acid last year, whilst I had cancer; when I had cancer people measured my bloods and told me the results; I was diagnosed with penitious anemia last year too, but Endocrinology have  forgotten that, unless I remind them, and when I remind them they just tell me my levels are OK, and I don't get given copys of my blood results.

I've now been waiting... err, two or three tweeks I forget to hear back from endocrinolgy, but they've not bothered writing. My GP said she'd chase them up, but now I've not heard from GP, so I'm back at zero again. no one doing anything, and my health detioriating day by day as I sit  at home, feeling faint and dizzy, in pain, and  drink tea and just wait. Still waiting to hear if anyones going to investigate further my enlarged heart too, or tell me the results of my kidney function test, or do anything about the increasingly bad oedema.
I'll probably have to cease all medication again dsoon, and force myself into a medical crisis so they will pay attention again, its the only way so far I've found to make them actually do anything, thus far that method got me off the terrible steroids that were making me halllucinate I'd been on a year, and the seocnd time I ceased medication I at least got them measuring my thyroid levels again. - Still need to know what thyroid levels are now, so I can start the growth hormone, but I think they seem to have forgotten about that.

How does one get results from the hospital then? Everyone else cept me seems to have a built in inate knowledge of how to be a ptient, no one ever taught me how to be a patient, or told me what is ment to happen in a consultation, I think that is why they confuse me so much, the Drs and nurses all behave so eratically and unscientifically it frightens me.