24/7

Ooo yum. I love cheesecake.

It's been sunny up here too. I went for a short walk with my daughter in law and baby, then coffee and cake sat in the sun.

Hello all, not been in for a while....

is any of that cheesecake still left...... mon mon mon ....

Had another three-monthly oncology clinick checkup today, and it was so hot out... I was just a bucket of sweat by the time we got to hospital, and this is not being helped as I'm full on again into the hot flushes at the moment.

Oncologist is happy I'm still in remission, and has now moved me to six-monthly follow up clinic checkups. Just hoping by the time the next appointment comes round I can have my hormones more sorted, so I don't have to keep reeling off a list of symptoms to oncology that I know are most likely non-cancer related, but which potentially could be either endocrine or cancer...

Asides which still trying to get some work done to the house, but I don't even have the energy now I had during the middle of chemotherapy, so its hard to even get any daily chores done, let alone try to get a kitchen and/or bathroom refitted...

Still hoping William and I may make it away for a short break this year, but we're in limbo still waiting for endocrinology to sort out my growth hormone injections, and get set up with those and all the  equipment and things for that, as well as getting the various testing on me, like a bone scan, done before the injections start. - I'm obviously not rattling endocrinology's cage  enough at the moment to make them do anything in any real time span. Injections shoudl have begun at least a month ago now. IN the meantime I've decided to entirely drop taking the levothyroxin (thyroid hormone), as its making me more ill from side efects, than any benifit I'm getting from it.  Now just hoping the cold weather arrives soon, as its just too warm for me to do anything when I'm having hot flushes for 2 or 3 weeks of every eight week period, due to the low testosterone levels.

hope all are well and coping as best we can

Mark

Hi Mark

I'm with you on the weather.  You know it's a really bad idea not to be taking any thyroid hormones at all though, don't you? It might be that levo doesn't agree with you, or you aren't converting, perhaps you should look at other options?  There is a liquid levo which is sometimes tolerated better, or you could try T3 only?  I know it's expensive, and GPs only like to prescribe when recommended by endo's but you really should have something.  Did you ever have your antibodies tested?  Have you tried gluten free? Sorry if I have asked this before.

Hi, yes, I know its probably a really bad idea, but my Drs won't listen to me, or treat me, and I can't keep putting something into my body that is making me feel worse day by day; I've so much more energy now I'm not taking the levothyroxin; the exact opposite of what I should be; I may try argue the case again with the endocrinologist, but my last clinic appointment (they are every three months), he wouldn't listen to my symptoms, and side effects from medications (including side effects listened as potentially fatal), and just told me 'your fine' - having looked at my bloods.

Yes, I've had my antibodies tested; the only positive ones I have is for penitious anemia, which the endocrinologist won't treat. The thyroid is due to my pituitary, so the glutin free etc, (mainly related to things like Hashies) isn't appropiate in my case as far as I can tell. At some point my Drs have to realise that with no quality of life I'd much far prefer to be dead anyhow, so there is no point in their treating me as they do, and constantly ignoring all the massive side effects from medication (I had no symptoms of low hormones at all, until they started me on hormone replacements, with the exception of testosterone). I'm getting a bit jaded with the attitude of the Drs I have to deal with in endocrinology TBH, almost as bad as the ones I had to see in oncology last year- the start of my low testosterone was during chemotherapy, and when I told my consultant my testicles had shrank, her reply was actually; " I don't care. I only want to know if they're enlarged/swollen". I had bloods showing low thyroid levels (Free T4, TSH etc), in March last year during chemo, which they refused to treat until about Feb/March this year. I'm at such a loss what to do, I can't even find any information on how one can change consultants, and as I'm blind, attending a differnt hospital, which would mean massive travel out of the city, is not possible.

Thanks though, it is just so complicated.
 

Yes, of course, you told me about the pituitary thing, I'd forgotten.  

Honestly, I'm so cross that you are in this situation.  It makes my blood boil that endocrinologists are so useless.  I've got a list of them from Thyroid UK who are supposed to be better.  Dr Kevin Shotliff at the Chelsea and Westminster is supposed to be good, or at least open minded, Dr Gul Bano at St Georges, Tooting is another, and Gerard Conway at University College. Also Dr Moira Waterhouse at St Bart's.  You can self refer or ask your GP for a second opinion from any of these.

Hope they will help in some way.

I gave up with the NHS and I self medicate.  If you want details on that you can PM me.

Hello all, I haven't been in for a while.  We have had a terrific holiday on a River cruise in central Germany. 

Mark I understand what it is like trying to get Drs to take a holistic approach. Fortunately I have a great Renal consultant and a great GP who gets things done. I was banging my head against a brick wall, cardiologist and oncologist batting my case back and forth. Both my GP and my renal consultant have written to them asking for a decision.  Can I or can I not have any more herceptin. I know they want you to make informed decisions about your treatment, but if they aren't sure how can I make a reasoned decision.

Anyhow, I have brought back apple strudel so I have left some for all of you. Enjoy

Sorry. nothing to say. it'd just upset people. sorry. feeling so rubbish as my hormones reduce further now, as I'm two wees until next testosteorne injection, and just full of hot flushes.

Mark that sounds such rubbish, so sorry. Heads, together, banging, sounds an idea......

Gillian, really glad you've had a good holiday, strudel sounds wonderful! 

Will try to post a pic of our houseguest this week, bless him.

Hugs to all xxx

A pic of Stanley

I suspect I shall be busy 'walkies' this week! Actually ten days, but who's counting?! 

Hugs xxx