# Addison's Disease?



## Twitchy (Nov 19, 2011)

Hi all...

Just wondering if anyone else 'out there' has Addison's disease? I'm currently waiting for a test to determine whether or not I have it (hypoadrenalism)... looks like it would mean tablets twice a day & an injection kit in case of emergencies.  Apparently it's another of those lovely autoimmune conditions you tend to get if you've got one of the others...(bit like bestwick figurines it seems!!)   Just wondering if anyone could fill me in on the day to day reality of it, as there's scant info about...

Many thanks,

Twitchy x


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## Pumper_Sue (Nov 19, 2011)

Hi Twitchy,
              I have the pleasure(not) of having addison's  

If you have Addison's you will be prescribed HC (hydrocortison) and or prednisolone. Plus a drug called florinef ths helps you keep hydrated and stops your BP ending up under the floor boards.
It's an apsolute must that you take the steroids and on time every day of your life. Always carry info to say you have addison's and always make sure you have an emergency injection kit with you at all times. (It will save your life)
In times of illness/stress you will have increase your steroid doses as your body doesn't produce any. The rule of thumb is if you vomit twice you use the emergency injection and call an ambulance. (It's a bit like balanceing insulin)
This  link has a lot of info http://www.addisons.org.uk/info/i_index1.html obviously it doesn't dwell on having the double wammy of diabetes as well

Hope it helps. Give a shout anytime if you want more info


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## Twitchy (Nov 19, 2011)

Thanks for your reply Sue - I think it's reassuring!   When you say "on time", what kind of margin for error is there exactly?! (Thinking of the rascally kid-induced state of permanent chaos I live in....!!!)  Still hoping against hope this is just a virus or something, but apparently the BP results & some other tests are enough to merit further investigation, so have some kind of intravenous test to look forward to now. Sounds fun! 

Thanks again,

Twitchy xx


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## Pumper_Sue (Nov 19, 2011)

Hi Twitchy the test is a ACTH stimulation test. 

The ACTH stimulation test is a blood test in which the amount of cortisol in the blood is measured before and after an injection of ACTH, usually over a period of 60 minutes.  Individuals with adrenal disease produce a comparatively small amount of extra cortisol in response to the injection.  Different hospitals apply different thresholds to define how small an increase in blood cortisol means adrenal failure. An elevated blood level of ACTH should also be found. 

If you are not feeling to bad at the moment you are very lucky not to have got to crisis point. Sounds as if you have a good team to spot a potential problem. 

Meds 1st thing in the morning and lunch time if on HC. This mimics your body response to cortisol.

Addison's is life threatening and a bad cold can sometimes end you up in hospital if you don't understand your bodies need for extra steroids.
If you have a crisis, your bp and bs go through the floor boards  A normal stay is 24 hours with an IV line pumping steroids into you. Then a 3 day period of double oral meds and feeling completely washed out.

You can live a normal life though as long as you remember the basic rules.


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## Twitchy (Nov 19, 2011)

oh my goodness, that sounds darn scary!! Hoping even more than before now that the test goes ok & I don't have this condition - it does NOT sound fun!  With two little walking germ factories (one at primary school, one at nursery!) sounds ilke I'd not need the injection so much as a permanent IV, eek! How on earth do you cope? I've been looking & I do seem to have quite a few of the symptoms, although apart from a marginal blood test & my BP dropping when I stand the rest could just be attributable to the aforementioned kids lol...fingers, legs, toes etc crossed that that's the case now...but seriously, thanks for telling me how things are - I'd far rather know what to expect & if there's one of many things this forum is great for it's getting at the facts the docs don't always want you to find out so you can ask them awkward questions hehe!

Thanks again! xx


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## Pumper_Sue (Nov 19, 2011)

Twitchy said:


> oh my goodness, that sounds darn scary!! Hoping even more than before now that the test goes ok & I don't have this condition - it does NOT sound fun!  With two little walking germ factories (one at primary school, one at nursery!) sounds ilke I'd not need the injection so much as a permanent IV, eek! How on earth do you cope? I've been looking & I do seem to have quite a few of the symptoms, although apart from a marginal blood test & my BP dropping when I stand the rest could just be attributable to the aforementioned kids lol...fingers, legs, toes etc crossed that that's the case now...but seriously, thanks for telling me how things are - I'd far rather know what to expect & if there's one of many things this forum is great for it's getting at the facts the docs don't always want you to find out so you can ask them awkward questions hehe!
> 
> Thanks again! xx



Lol You will be fine, you have the 1st tool a pump, control is so much easier with a pump.
I have lived and worked on a farm for years and am still alive to tell the tale 
Your body does tell you when you need extra steroids though, so as long as you listen to it you will be fine.
Other option is rehome the kids


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## AJLang (Nov 19, 2011)

Hi Twitchy I just wanted to let you know that I'm thinking of you and hope that everything works out ok xx


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## trophywench (Nov 19, 2011)

Pumper_Sue said:


> Lol You will be fine, you have the 1st tool a pump, control is so much easier with a pump.
> I have lived and worked on a farm for years and am still alive to tell the tale
> Your body does tell you when you need extra steroids though, so as long as you listen to it you will be fine.
> Other option is rehome the kids



Oh how kind Sue! - look Twitchy - your kids can go and live with Sue in Cornwall - or perhaps she'll be willing to just have them for all the school holiday weeks!  ROFL - that being the time when most people would gladly give em away .......    




























's alright, only joking!


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## Pumper_Sue (Nov 19, 2011)

trophywench said:


> Oh how kind Sue! - look Twitchy - your kids can go and live with Sue in Cornwall - or perhaps she'll be willing to just have them for all the school holiday weeks!  ROFL - that being the time when most people would gladly give em away .......
> 
> 
> 
> ...



No problem I love kids...................... what time is lunch


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## Twitchy (Nov 20, 2011)

LOL at you lot!!  

I personally reckon it's not autoimmune, it's just the kids stressing me out that has worn out whatever squishy looking internal organ it is that makes adrenaline hehe!   They might drive me mad but I love 'em... 

Thanks for the info - it ls really, really appreciated! I'm an engineer by trade, I like to know all the gorey details no matter how scary, I like to know the worst case, so your replies have really helped! 

Thanks again,

Twitchy xxx


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## grahams mum (Nov 21, 2011)

they were talking about addison desease on saturday regarding the medical dog maybe you can apply for a puppy to be trained (01296 655888)


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## Twitchy (Nov 21, 2011)

grahams mum said:


> they were talking about addison desease on saturday regarding the medical dog maybe you can apply for a puppy to be trained (01296 655888)



Really? That would be Amazing!...guess you have to meet pretty tight criteria though & I wouldn't want to 'do someone out of a dog' who needed it more...at least if it turns out I do have this condition & it gets nasty then that might be a good idea long term, depending how bad it gets...a good silver lining!   Thanks for the number.


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## grahams mum (Nov 21, 2011)

i hope you can have one if is going to be a really good help


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## Pumper_Sue (Nov 21, 2011)

grahams mum said:


> i hope you can have one if is going to be a really good help



Most people with Addison's realise when they are in trouble and need to take action. There are a few though who have the unfortunate problem of a very fast onset of crisis an alert dog would lovely for that.


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## MissMolly (Nov 22, 2011)

*What's the symptoms?*

Hi Twitchy hope u get ur answer soon never fun to wait.

Sorry for prob sound a bit daft... but they have done those Addisson's test on me for the last 5 years because I have such a bad trouble with hypos and sudden unconsciousness and they don't know why. However they have found that my cortisol (not sure how u spell it)level  and one other level is only a 1/4 of a "normal" level but to me they have said its not Addisson's because the 3rd level is almost normal. Can't remember what they call the "3rd level" I'm constantly injuring myself broken ankle, broken arm, broken leg, number of concussions, fractured skull, stabbed myself a number of times as well, was driven over by a buss 3 years ago when I fell as I went of the bus. The paramedic's in the area there I live know me by name, address, partner, GP, work (when I had one)... like a friend  
A friend in US her sis is a T1 Diabetic and she's said her sis hypos are awful... I use to complain about mine. That's why I wounder what's your symptoms or the reason why they check that on u? Any suggestions for anything who might be helpfull to me??


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## Twitchy (Nov 22, 2011)

Hi MissMolly, sorry to hear your hypos are so awful!!   My main symptoms are dropping BP when standing compared to sitting, and low cortisol levels - although I'm yet to have the intraveinous test...I've also been permanently exhausted for months whilst thyroxine levels etc are fine...plus I suspect there are several other symptoms that the doc was subtly asking me about without wanting to freak me lol...he did do the first blood test last year, so I guess there are enough indicators for him to keep an eye on me...??   My hypos are thankfully not too bad, but I've always put that down to me being diagnosed so young, I've always assumed that my body has somehow adapted over the years...or maybe I'm just really lucky!! 

All the best,

Twitchy xx


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## AlisonM (Nov 22, 2011)

I've had Addison's for about 15 years now. It turned up well before the Diabetes and seems to be one of the many. many conditions I've got that doesn't actually cause me too much trouble as long as I keep taking the meds.

The main symptoms for me seem to be tiredness, aches and pains and dizziness, especially when standing. Before I was diagnosed I developed a nasty habit of falling over for no apparent reason. Also, my BP would drop and I would start stammering quite badly. 

For the most part I seem to manage OK with relatively few problems, except the hypos. The theory now is the Addison's may be driving some of the more severe hypos I've had but 'they're' not sure of that since the meds are keeping my cortisol level within tolerance. Whatever that means.

Have they given you a date for the tests yet?


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## Pumper_Sue (Nov 22, 2011)

If you have low blood sugar due to addison's, carbs will not raise your blood sugar. Only steroids will.
@ Miss molly have you tried a different type of insulin to the one you are on?
A change and some education on how to use it might just solve your problems.
Many people can not use analogues so worth thinking about a switch and if not on analogues try it or another you havent tried.


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## Pumper_Sue (Nov 22, 2011)

AlisonM said:


> I've had Addison's for about 15 years now. It turned up well before the Diabetes and seems to be one of the many. many conditions I've got that doesn't actually cause me too much trouble as long as I keep taking the meds.
> 
> The main symptoms for me seem to be tiredness, aches and pains and dizziness, especially when standing. Before I was diagnosed I developed a nasty habit of falling over for no apparent reason. Also, my BP would drop and I would start stammering quite badly.
> 
> ...



If the hypo is caused by low cortisol then carbs as stated in the above wont fix them.
What dosage of steroid are you on Alison and how do you take them? (As in timeing)


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## AlisonM (Nov 22, 2011)

I do know that Sue, it's one of the reasons I have such trouble with Hypos. On a normal day, I'm on 2 HC (or 40mg per day) at the moment. I had some problems with indigestion so I take them with my meals (20:10:10).


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## Pumper_Sue (Nov 22, 2011)

AlisonM said:


> I do know that Sue, it's one of the reasons I have such trouble with Hypos. On a normal day, I'm on 2 HC (or 40mg per day) at the moment. I had some problems with indigestion so I take them with my meals (20:10:10).



Wow that is a lot of HC  double the normal dose.
Do you think you just use it very quickly? I found just using HC on it's own was a diaster with me as seemed to gobble it through my body at a rate of knots.
So to solve the problem I use Prednisolone as well as HC. 5 pred and 5 HC. As pred is longer acting I just take both tablets in the morning. This stopped all the crashes very nicely thank you. 5 pred and 5 HC is equal to 25 mg of HC.


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## AlisonM (Nov 22, 2011)

I was on a lower dose to start with and we ramped it up until things stabilised. I've been on the current dosage since the 'ologists' conference earlier this year and it seems to be working, one of the few things that _is_ going right so I ain't messing with it.


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## Pumper_Sue (Nov 22, 2011)

AlisonM said:


> I was on a lower dose to start with and we ramped it up until things stabilised. I've been on the current dosage since the 'ologists' conference earlier this year and it seems to be working, one of the few things that _is_ going right so I ain't messing with it.



I wasn't suggesting you messed! with it. All I was doing was pointing out what worked for me in the same situation. As 40 mg HC is an awful lot of HC and carries a lot of dangers at that levels (weight gain, high A1's, catteracts and cushings)

The idea was perhaps it was something to discuss with your team if things started to be probmatic again.


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## AlisonM (Nov 22, 2011)

We have, of course, discussed the risks and I am closely monitored and regularly tested. By we, I mean myself and the specialist team at Raigmore (would that the Diabetes people were so on the ball). I've also done my own quite extensive research so that I understand the dangers and benefits. 

Unfortunately, I am faced with a whole range of medical conditions each with it's own needs and complications, and the drug interactions are often fearsome. This is another thing that must be considered as we have to be very careful what I take and when. All of this has a serious effect on any possible medications regime and HC, even at this high dose, is causing few problems so far. As long as that continues we see no need to change it when there are other problems more immediate that need sorting. Indeed, the only thing I can't seem to get under any sort of control at the moment is this blessed Diabetes.


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## Pumper_Sue (Nov 22, 2011)

> Indeed, the only thing I can't seem to get under any sort of control at the moment is this blessed Diabetes.


This was the problem I had and as soon as I changed to a different action of steroid it stopped the ruddy hypo's big time.
There's a forum on the www. that deals with Addison's and diabetes and another member suggested a change of steroid without the peaks and troughs might work. So after discussion with my team who hadn't even thought of the idea it was agreed for me to try it. Talk about an oh wow feeling.
Hypo's now are of my own making ie miscalculation of insulin or carbs 
Obviously pred can't be used as an emergency dose due to it's slower onset so HC is used for that as is injectable HC if I hit crisis point.


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## Northerner (Nov 22, 2011)

Interesting stuff. Is the fact that carbs don't raise BG due to the fact that you need the cortisol as part of the process to stimulate the liver? I'm always a bit hazy about how directly those jelly babies get into my blood!


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## Pumper_Sue (Nov 22, 2011)

Northerner said:


> Interesting stuff. Is the fact that carbs don't raise BG due to the fact that you need the cortisol as part of the process to stimulate the liver? I'm always a bit hazy about how directly those jelly babies get into my blood!



I think so Alan.
Interesting thing also is if you look on a glucogen kit it states not to be used with adrenal inaficiency. (hopefully they spelt it better than me lol)
Basically people with addison's have no storage to dump so no point in the injection.


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## Twitchy (Nov 22, 2011)

This is really fascinating stuff! Albeit a tad scary & a bit of a blooming pesk for people with multiple conditions...interacting meds are never much fun.   I still don't have a date for the test yet, wondering how long to leave it before calling the endo nurse myself  I did see the GP earlier & he stated in one breath that it's good that the endo seems to be seeking to 'rule out' hypoadrenalism rather than confirming it (as it were) and then in the next confirmed the symptoms did all point that way & it was unlikely to be anything else, doh! If it IS Addisions I just hope it won't stop my Vitrectomy in early '12, I'll have been waiting nearly a year & will be soooooo unamused!  Maybe I'll call the endo nurse tomorrow if I don't hear anything today...?!


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## Northerner (Nov 22, 2011)

Pumper_Sue said:


> I think so Alan.
> Interesting thing also is if you look on a glucogen kit it states not to be used with adrenal inaficiency. (hopefully they spelt it better than me lol)
> Basically people with addison's have no storage to dump so no point in the injection.



So would you need to be put on an intravenous glucose drip to raise your levels, or would a steroid injection work? Am I also right in thinking that glucagon injections don't work if you are intoxicated or if you have already had one in the previous 24 hours, as your liver can't respond?


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## Pumper_Sue (Nov 22, 2011)

Northerner said:


> So would you need to be put on an intravenous glucose drip to raise your levels, or would a steroid injection work? Am I also right in thinking that glucagon injections don't work if you are intoxicated or if you have already had one in the previous 24 hours, as your liver can't respond?



Hi Alan,
         it's a funny thing to say but I can tell the difference between lw steroid hypo and hypo lneed carbs.
Hypo as in need carbs just treat as normal and carry on with life as per normal.
Addison's induced hypo means low blood sugar and low BP and can also involve winning the prize for vomiting. Dehydration is a very big danger.
The only time I have been admitted for a full blown crisis it involved after hours doctor x 2 plus 2 teams of paramedics. They set up an IV line to get fluids into me plus steroids. No glucose was involved at all. Once admitted The drip was continued for 24 hours with steroids 100mg every 6 hours.
The same has happened when needed a GP call out just an extra injection of steroids into arm or leg to tide me over with instructions to ring if going down hill again. ( I tend not to ring as know where I will end up)
Consultant does his nut about this says if you need to inject you come in. (seems a dreadful waste of resources if I can manage)
You then need double steroid dose for 3 days after as well so your body recovers. Washed out rag springs to mind as the feeling.

I'm not sure about the usage of the glucogon injection as don't have one. Liver would be well and truly depleted after booze though so can't see it being any good if nothing to work on.


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## Ellie Jones (Nov 22, 2011)

Yes Alan you'll correct about the Glucogen Jab, not sure though whether it's actual 24 hours, but it can only dump what ever is stored in the liver..  Also if you suffered a series of hypo's in quick succession then this also depletes the liver store (the liver won't re-blemish the store while hypo hence higher risk of a rebound hypo)..  So can make the Glucogen pen ineffective.. 

If a glucogen jab is administered by an ambulance crew then they should automatically admit you into A&E for monitoring in case of a rebound hypo!

I actually didn't know this until last Wednesday, Yep Les had an hypo which I ended up having to call the paramedics out for  Ellie did her bit, but alas because Les had dosed off on the settee, he woke up disorientated and contrary and wouldn't have any Jelly Babies would drink anything, attempting to spoon feed him sugar didn't work, I tried wetting my finger dipping sugar to see if I could get that in his mouth...  Absolutely  having none of it as he got nearer to unconsciousness I got the Glucogen kit out only to find both ours were out of date last month

So had no option but to call out the paramedics...  We had a newly qualified paramedic who really wanted to avoid the Glucogen Jab due to having to having to go into A&E, so he tried a last ditch attempt to get Les to drink something but failed, then we tried pining Les (the technician, me and flo) so the paramedic could get a cannula into Les, failed both times he managed to get the cannula in, but because Les was fighting us, ended up going through the vein..  So Jab it was

Les was taking a long time to come around after the Jab, I found out why when I looked through his meter..  He had 3 previous hypo's that day 2 at work, and the 'low' he said he had when his mum was here, was quite a nasty hypo!  Oh and 2 hypo's in work the day before..


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## Northerner (Nov 22, 2011)

Blimey Les! C'mon mate, get yer act together!  Sounds scary Ellie, he's very lucky you were around!


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## Twitchy (Nov 22, 2011)

Ellie Jones said:


> So had no option but to call out the paramedics...  We had a newly qualified paramedic who really wanted to avoid the Glucogen Jab due to having to having to go into A&E, so he tried a last ditch attempt to get Les to drink something but failed, then we tried pining Les (the technician, me and flo) so the paramedic could get a cannula into Les, failed both times he managed to get the cannula in, but because Les was fighting us, ended up going through the vein..  So Jab it was
> .



That's horrific - am I right in interpreting that as the paramedic didn't want to be bothered with a trip to A&E?? And as a result basically caused unnecessary injury & distress? That sounds like someone who shouldn't be qualified at all if that's how they are 'caring' for people!  Not confidence inspiring at all...   Hope Les is recovering well! xx


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## Ellie Jones (Nov 22, 2011)

No it wasn't a dereliction of care or duty of the paramedic, he was honestly thinking of best treatment in the interest of the patient...  

Our A&E department is in the next town which is 15 miles away we only have an small injury unit..  So Les's was more than happy to sign a disclaimer form, that's a first before I've just signed to say that I'm happy to take over care of Les..

Mind you, if you can stifle a snigger and maintain a straight face, when muppet (Les) first words has he came round was 'oh I say' in a rather feminine voice...


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## Twitchy (Nov 23, 2011)

Ellie Jones said:


> No it wasn't a dereliction of care or duty of the paramedic, he was honestly thinking of best treatment in the interest of the patient...
> 
> Our A&E department is in the next town which is 15 miles away we only have an small injury unit..  So Les's was more than happy to sign a disclaimer form, that's a first before I've just signed to say that I'm happy to take over care of Les..
> 
> Mind you, if you can stifle a snigger and maintain a straight face, when muppet (Les) first words has he came round was 'oh I say' in a rather feminine voice...



Glad to hear it wasn't shortcuts being taken, phew!   ...and have you told him what he said yet?!  Scary time for you though, glad he's ok now! x


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## trophywench (Nov 23, 2011)

LOL at Les - puts me in mind of an ambulance lady asking me to tell her my name as I was coming round.  I can remember thinking what a stupid question (?) and saying, Well I do KNOW it, of course.  She said eg Perhaps you'd like to share it with us then?  Me - I just can't be bothered ! and went to sleep.  They carted me into the hosp and once I got there and they came to tend to me, I could actually have sat up and made sense, but just on it the ambulance were doing the handover and telling doc what I'd said, they had a laugh - and I cringed with embarassment and decided to stay 'asleep' for another 10 minutes!  LOL


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## Twitchy (Dec 1, 2011)

Well had the test this morning, just back...looking like a 'pin the tail on the donkey' board lol!   Won't get the results for a while it seems...feeling really queasy which I'm taking as a good sign that something internally must be kicking out some kind of hormonal response to the jab?!  Anyhoo, waiting game now...


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## Northerner (Dec 1, 2011)

Twitchy said:


> Well had the test this morning, just back...looking like a 'pin the tail on the donkey' board lol!   Won't get the results for a while it seems...feeling really queasy which I'm taking as a good sign that something internally must be kicking out some kind of hormonal response to the jab?!  Anyhoo, waiting game now...



Hoping for the best possible outcome Twitchy


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## Steff (Dec 1, 2011)

Hoping for the best possible outcome too Twitch xx


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## AJLang (Dec 1, 2011)

Hi Twitchy hope that they get this all sorted out for you soon and everything starts to improve for you.  As we are getting to the end of this year I hope that next year goes brilliantly for you, you deserve it to  xx


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