Re: Update since I saw endo...

[Guest guest]

no thoughts/ideas anyone?

>

>

> Havent really felt like typing all this out until now...

>

> ...I am currently on weekly injections of B12 (Cyanocobalamin) and daily dose

of 2 x colecalciferol 20000. The Cyanocobalamin goes down to monthly in 4 weeks

time.

>

> Any advice on whether i ought to take anything else in the mean time or wait

until i have spoken to dr skinner/seen the cardiologist (not had appt. for that

yet).

>

> I am utterly devasted that i am 30 and have a severe heart problem and am

facing open heart surgery...... and more so that for the last two years at the

very least, i have had this and had no treatment for it. How much better might i

have been if it had been caught two years ago? Grr!

>

[Guest guest]

Hello Emma, I know little or nothing about what you should or

should not be taking now that you have found you have a severe heart problem

and would recommend strongly that you telephone Dr Skinner's office as soon as

possible to arrange a time to speak with him to get his recommendations. I am just

so sorry to hear about this and hope everything is cleared up as soon as

possible. However, you will have already been assured that open heart surgery

today is very safe and very effective and does not carry the awful worry such

an operation had when it was first used many years ago. Let us know what

Dr Skinner recommends when you have spoken to him Emma.

Luv and big (((HUGS)))

Sheila x

no thoughts/ideas anyone?

>

>

> Havent really felt like typing all this out until now...

>

> ...I am currently on weekly injections of B12 (Cyanocobalamin) and daily

dose of 2 x colecalciferol 20000. The Cyanocobalamin goes down to monthly in 4

weeks time.

>

> Any advice on whether i ought to take anything else in the mean time or

wait until i have spoken to dr skinner/seen the cardiologist (not had appt. for

that yet).

>

> I am utterly devasted that i am 30 and have a severe heart problem and am

facing open heart surgery...... and more so that for the last two years at the

very least, i have had this and had no treatment for it. How much better might

i have been if it had been caught two years ago? Grr!

>

[Guest guest]

Emma,

Wow what a story, shame I missed it earlier (but it was Christmas Day). I

would get in there fast and ask the doctor for Free T3, Free T4 and TSH readings

whilst he still feels guilty.

There is a whole chapter in the book, Hypothyroidism Type II by Mark Starr, but

this refers mainly to the heart enlarging as it gets filled with mucin. There

are photos in the book which show the heart going back to normal size after

receiving natural Thyroid.

I loved your description of the doc not hearing your heart from 4' away, at

least you still have a sense of humor. I know all this must be a shock, and

the idea of heart surgery is very scary, but you're in a much better position

than you have been for the past few years.

Ask for the thyroid test results for the past few years , it might be worth you

having a look and deciding whether you have a problem. You are entitled to

them under the freedom of information act and the doc has to give them you if

you write to him. I wouldn't be trusting this doctor to read a set of thyroid

tests, have a look for yourself.

x

>

>

> Havent really felt like typing all this out until now.

>

> So last I posted here, i was waiting for an appt to see endocrinologist at my

local hospital.

[Guest guest]

Emma,

Here's an excerpt from wikipedia about B12 injections.....

A common synthetic form of the vitamin, cyanocobalamin, does not occur in

nature, but is used in many pharmaceuticals and supplements, and as a food

additive, because of its stability and lower cost. In the body it is converted

to the physiological forms, methylcobalamin and adenosylcobalamin, leaving

behind the cyanide, albeit in minimal concentration. More recently,

hydroxocobalamin (a form produced by bacteria), methylcobalamin, and

adenosylcobalamin can also be found in more expensive pharmacological products

and food supplements. The extra utility of these is currently debated.

It does say that the useage of hydroxocobalamin is debated over the synthetic

cynocobalamin,,,, Hmmmmmm... I know which one I use...

.

> >

> >

> > Havent really felt like typing all this out until now.

> >

> > So last I posted here, i was waiting for an appt to see endocrinologist at

my local hospital.

>

[Guest guest]

Thanks guys (I figured folk had missed this due to the festiveness)..

I intend to speak to Dr Skinner asap, or at least to his secretary and see what

is advised there. I don't forsee any problems getting my GP to refer me (I DONT

*assertive face* grr! he wouldn't dare!).. if i need that doing to get to see Dr

Skinner..

Im also going to ask to see all my notes, which is going to involve spending

half the day in the Drs reading them - oh wot fun..

Interestingly and I do not think coincidentally, oen of the symptoms that has

been at best irritating and at worst debilitating, that of pins and

needles/numbness and pain down my left thigh has almost completely gone

following hte B12 jabs... So looks like that WASNT sciatica due to being fat...

No one has told me ANYTHING about open heart surgery, for reassurance or

otherwise - heck no ones telling me anything unless I ask outright and even THEN

i am getting not a lot in response. The vast majority of what I know is through

my own research and I really do dread to think what happens to folk who don't

have my bolshy nature and pushy frame of mind - actually I do know.. I suspect

they die.

Oh and I think i managed to badly upset one of the nurses the other day by

daring to ask if i could do my OWN b12 jabs... i got back 'no. beacuse they are

intra muscular'... 'yes I know, if i could just be shown how to do that'../ 'No.

you need to be trained...'.

Riiiiiiiiiight. Which part of 'shown how to do' did she miss there. I fear I

have committed a huge faux pas in suggestion a mere non-medical person could

possibly learn how to do such a deeply complex task for themselves. Theres

probably a posse of outraged nurses hunting me down as I type this... wait...

arrrrrrrrrrrrrrrrgh.

Ill update (supposing the outraged nurses dont get me) in a few days when ive

got further news! (A sense of humour is a must I find!)

Em

[Guest guest]

Em,I too asked if I could inject my own B12 and nurses said I could not possibly do it myself.   Dah, I inject insulin several times a day.Lilian

Oh and I think i managed to badly upset one of the nurses the other day by daring to ask if i could do my OWN b12 jabs... i got back 'no. beacuse they are intra muscular'... 'yes I know, if i could just be shown how to do that'../ 'No. you  need to be trained...'.

[Guest guest]

Hi Emma

What a shock for you to be told about the open heart surgery! Good on you for

still having a sense of humour.

I like the part about sitting four foot away in A CHAIR!! ( No way to listen to

a heart)

Can I just say Dr P is so lovely, glad you will be seeing him. He says that an

old doctor once told him many years ago that most patients know what is wrong

with them when they come into the surgery.

Another point I might raise, what do the GP's say to patients who are not

overweight?? Since they blame everything on being overweight??

Heres to a Hopefull New Year for getting some health back for you.

Lots Luv Stephie

>

> And.

>

> He discovered i have a left mitral valve regurge problem.

>

> Now for the last two and a half years I have been saying to myself, to

everyone else including doctors 'some of my symptoms, especially the chronic

water retention which if left untreated leads to fluid build up on my abdomen,

pitting edema and fluid in my lungs which limits my ability to breathe - could i

possibly have a heart problem'...

>

>>

> If i say I am monumentally hissed off with my GP (who has never listened to my

heart!) is something of an understatement!

>

> > I also have severe vit b12 deficiency and vit d deficiency.

>

>>

> re-visted my GP on monday an it is very clear that he knows he has made an

almighty clanger in missing this heart problem as the cause of the serious water

retention that he has been giving me diuretics for for the last nearly 3 years!

>

> He did try to claim it was because im fat.. (which i am, fair play im 23 stone

and thats going to cause fatigue and tiredness...) and also that being fat means

its hard to hear the heart. Its a heck of a lot harder to hear it if you remain

sat in a chair 4 ft away though, as compared to using a stethoscope....grr!

[Guest guest]

" It's all in your head " …. " you are depressed

- here's a prescription for antidepressants " …. " you need to get

out and about more and stop brooding " … " your TFT's are within

the reference range - therefore, you do not have a thyroid problem "

Luv - Sheila

Another point I might raise, what do the GP's say to patients who are not

overweight?? Since they blame everything on being overweight??

[Guest guest]

Yes of course Sheila

How could I forget???

And there was I swimming thirty to forty lengths of the local pool three times a

week trying to control my weight.

But then my GP then said your thyroid was a bit low do not worry about it!!

Stephie

>

> " It's all in your head " .. " you are depressed - here's a prescription for

> antidepressants " .. " you need to get out and about more and stop

> brooding " . " your TFT's are within the reference range - therefore, you do not

> have a thyroid problem "

>

> Luv - Sheila

> Another point I might raise, what do the GP's say to patients who are not

> overweight?? Since they blame everything on being overweight??

>

[Guest guest]

>>>>>Another point I might raise, what do the GP's say to patients who are not overweight?? <<<<<

They actually take the trouble to investigate a bit more.Lilian 

[Guest guest]

My own example is: " Wrap up well " . Nothing else.

Hans

Another point I might raise, what do the GP's say to patients who are not

overweight??

[Guest guest]

Hi Emma

I maybe missed your earlier postings but gather that you may need open

heart surgery and as I have been there and done that after being air

lifted as an emergency case into the Wolverhampton Heart & Lung

Hospital, said to be one of the finest in the world, I can assure you

that nowadays it is done routinely. I was amazed at how many of these

operations are done in a week and on the fifth or sixth day you are

allowed home. I had a bit of a hitch but six of the women who went down

to theatre on the same day as me left sooner than me. On the second day

you are wanted out of bed and on the third walking round. Unfortunately

I have ME (now I believe it was hypothyroid and adrenals) and it limited

my recovery somewhat but I surprised myself and all the doctors as to

how well I did. I was 72 when I had the operation and you are young so

your recovery should be much quicker/better. Within six weeks you will

be able to carry on most things except lifting.

As for injection B12 I am surprised that you have not been shown how to

do this. I do it regularly and there is nothing to it. If you were

diabetic you would have to do it!

All the best. Good luck

Audrey

[Guest guest]

Thanks Audrey, that really does help. Ive been told pretty much nothing at all!

I'm like a mushroom here (kept in the dark and fed on...!!)

I got told years ago I was depressed - back in the days when I probably wasnt

quite fat enough for it to be that.

Funnily enough, not one single anti depressant has worked on me and I 'fell out'

of the mental health care system swearing I wouldnt touch it with someone elses

bargepole again!

>

> Hi Emma

>

> I maybe missed your earlier postings but gather that you may need open

> heart surgery and as I have been there and done that after being air

> lifted as an emergency case into the Wolverhampton Heart & Lung

> Hospital,

[Ed]

[Guest guest]

I was taught how to inject B12 for my daughter by the district nurse. Eventually

my daughter took over and did this herself (she is 22). She had to inject a

small amount everyday. Its very straight forward to do and my daughter has

overcome her problems with needles and blood tests by doing this herself, Judy

>

> Em,

>

> I too asked if I could inject my own B12 and nurses said I could not

> possibly do it myself. Dah, I inject insulin several times a day.

>

> Lilian

>

> >

> > Oh and I think i managed to badly upset one of the nurses the other day by

> > daring to ask if i could do my OWN b12 jabs... i got back 'no. beacuse they

> > are intra muscular'... 'yes I know, if i could just be shown how to do

> > that'../ 'No. you need to be trained...'.

> >

> >

> >

> >

>