Adrenal inufficiency

[member_41265]

Hi Pat,
Thank you for the documents you emailed me, it will be very reassuring to have those with me should I end up in A&E again. I'm going to try and get another appointment with my endocrinologist ASAP to discuss why I am having so many crashes. The endocrine nurse, Alison was a great help when I spoke to her yesterday. She suggested some small changes in size and timing of hydrocortisone doses and and another possible explanation why I don't seem to be getting the full benefits from my tablets.

As I have pernicious anaemia and this causes chronic gastritis, my stomach is always very susceptible to side effects from many medications. And I now see why that could affect absorption. I think the Pantoprazole antacid tablets I have to take also deplete hydrocortisone too. As soon as I can get rid of this horrid chest infection, with everyone's help I will concentrate on making the changes needed to stabilise my adrenal problem. Best wishes,

Debra.

[member_41265]

Hi Pat & Carl,

Thanks to you and the excellent advice from Alison am managing quite well at the moment, apart from the infections I have that is. Currently I have a chest infection for which I am on my third different antiobiotic, also awful pleurisy and a partially collapsed left lung. As usual the GPs I saw were too slow to treat the chest infection so complications arose. It was the old story, " your temperature is only 37.2" - but normal for me is 36.6oC or less . People can have pneumonia with a normal or low body temperature - why don't doctors see that? The implications of this for all patients are horrendous!

Yesterday, I saw my Urologist and asked him if he could speak to my Endo and then between them devise a treatment protocol for when I have to be admitted to a ward after a crisis/infection and put it in writing with a copy for me. When I have gone straight to A&E by ambulance I have usually been given IV Gentamicin and one shot of IV cortisone, but then I am sent to a ward and the fun starts. I end up still taking tablets to fend off another crisis. However, when I have the documents from this website filled in my my Endo I will hopefully get what I need. Attempts to get an appointment with my Endo have failed so far but without one I just cant get the forms filled in and signed. Fortunately My urologist is the most senior one in the trust so I'm hoping he'll succeed where I haven't.

I'm still on quite a high dose of hydrocortisone and my face looks like that of the Churchill dog ! But with Alisons help I'm reducing that - without her help I would have been in a right mess. Thank heavens for this website and members, you are all worth your weight in gold ! Best wishes,

Debra.

[Carl]

Hi Debra, good to hear about some progress, shame about the continuing infections. Stay positive and feisty!

Looking forward to more positive outcomes once you get that Endo on board.

Cheers, Carl.

[member_41265]

Hi Carl and Pat and everyone,cation for me on the way to the hospital

I haven't been on here for a while as I've had a nasty chest infection which yesterday precipitated two adrenal crises. Whilst at my GP surgery having a B12 injection I started feeling very unwell and was lucky enough to immediately be seen by a GP who knew a lot about adrenal insufficiency. He was said he thought it was my adrenals that were causing my fever, breathlessness and sickness rather than he infection and a nurse then administered the emergency hydrocortisone injection for me. After 15 minutes I felt much better and returned home and the doctor told me if I started going downhill again later in the day I should go to A&E or call an ambulance. This was because my partner was away that day and its him that has to do the injection as because of neuropathy I haven't the manual dexterity to do it myself.

Unfortunately about 5 hours later I started with another much quicker crash and so I had to ring 4 an ambulance. The paramedic did the Injection for me using my kit and for the first time ever I was given i'v cortisone 6, 12 and 18 hours later. I was also given fluids. But my blood tests have since shown elevated lactate so I've been kept in hospital until it goes down. Does anyone know about lactate and its significance? I gather from the doctors that it means my adrenal situation is still unstable. And the blood for the test was taken from my ear! If anyone knows about this I'd like more information. I still haven't been able to get an appointment with my endocrinologist as she wants me to have a day curve test which involves lots of needles and I don't want it because I have such a bad needles phobia.

I'm at my wits end with it all and exhausted from all the crashes. My partner says I have no option but to have the day curve test even though it will make me wretch and surely artificially inflate the cortisol readings? This is such a steep learning curve. Excuse any mistakes in this posting as the font on my phone is so minute. Best wishes,

Debra.

[Pat]

Hi Debra

Has the ward contacted your endocrinologist? If still in tomorrow, this could be done.
Sounds as though curve/ more tests needed to find out why this is happening.
Let us know how you are

[Carl]

Yes, do let us know how you get on.

I sympathise with the needles thing, like you I was terrible with needles when my diagnosis first came around. But the amount of blood tests and injections I've had in the last 2 years have kind of got me used to the needles. I know that's easy for me to say having conquered the phobia...in fact I've just had a blood test today. I found the more relaxed about it I became, the easier it became to take blood from me, I think the blood flows more easily if you're relaxed. It is just another factor of the whole situation you could do without! I've never had blood taken from my ear before....weird!

[member_41265]

Hi Pat and Carl and everyone,

Thanks for advice, I have escaped from the hospital but not before I had yet another frightening experience. As I already told you, this time round I did get 3 extra IV doses of cortisone but six hours after the last one I went downhill again with nausea, weakness, dizziness. This was around 3am in the morning. I asked for a doctor straight away but half an hour later there was still no sign of one and I must have then fallen asleep.

But that sleep could so easily have been the end stage of another crisis, and with such infrequent observation, so easily have been the end for me. The next day I made a complaint but all I was told was that the shift had changed and a doctor may have looked in on me but saw I was asleep and left. My chest infection has cleared now but when I saw the urologist yesterday he told me ihave yet another uti. At least he's prescribed an antibiotic straight away so I may be able to stay out of hospital this time.

I am told that the lactate test measures the amount of oxygen in the blood. That would tie in with me being short of breath at times. This should be being followed up as it still persists but I'm not optimistic on that front. So anyway, I Am still on my double dose of hydrocortisone and looking like the Churchill dog! And it looks like I will have to have the dreaded day curve test as my endocrinologist won't see me otherwise. Best wishes,

Debra.

[member_41265]

Hi Pat, Carl & everyone,

As demanded by my endocrinologist I had the dreadful day curve test 2 weeks ago but have since heard nothing. Today I had too see my GP regarding some sort of care plan she is compiling to try and stop me having to resort to going to A&E when I have UTIS, sinus or chest infections & accompanying adrenal crashes. I'm not optimistic of the outcome however. Anyway, when I asked her if the day curve test results were available yet I was to be extremely shocked by her reply. She told me no they werent and the endocrinologist who has just taken over my treatment (for some reason I am not now allowed to see the previous lady) thinks I do not have adrenal insufficiency and she wants me to stop taking the steroids . I was utterly gobsmacked as I vividly recall my second short synacthen test showed a baseline cortisol level of only 7, which rose to 50 after the ACTH injection.

I wish I had known this before I put myself through the day curve test, which I was told would only involve one needle but the cannula clogged up so I ended up having multiple stabbings to obtain the final 3 samples. What with my needles phobia it was utter hell. I cant believe what the endocrinologist is thinking of when I have had a pituitary scan which showed a microadenoma, and also I have other deficiencies such as TSH, FSH and LSH. To date I have had 7 adrenal crises, observed by my partner, mother and ambulance crews. Needless to say I am anticipating my next appointment with the endo to descend into a slanging match as I just wont be able to stop myself stating exactly what I think of her proposed treatment regime - or should I say LACK OF treatment regime. The other endo I was seeing until recently made the diagnosis of secondary adrenal insufficiency a year ago, based on my symptoms and the abysmal SST result.

I intend to phone Alison on Thursday and discuss it with her but of course I'm dreading what will transpire if I have to stop taking hydrocortisone. Has anyone else encountered this sort of hassle? Best wishes,

Debra.

[Carl]

Hi again Debra, no luckily I've never had this kind of hassle with my endocrinologist...he was nothing other than professional and easy to contact and understand. My short synacthen test had a high of about 70-odd, and I'm on Hyrdocortisone....so your advice seems odd. It would be good to see the results of the day curve and a proper explanation of what clinical evidence points to you not having adrenal insufficiency. Certainly have a chat to Alison.

One thing is for sure, having a slanging match with the doctor/endo isn't going to solve the problem. You really need their help, and whilst making it clear that you are angry is fine, the real source of your anger, is being really worried about your condition. And you need to try and get that over to the endo, and still get the support you so badly need.

It's a very difficult situation to be in, and I don't envy you that or have any other advice to give. But all you can do is get all the facts straight in your head and a clear list of questions you want answers to prior to getting into the appointment.

I have seen health care professionals quoting this bit of advice to one another - and I think it rings very true. The only true expert on exactly how a condition affects someone, the only true expert in the room on how your condition makes you feel, is you . Make sure whoever you end up sitting with realises that

Best wishes, Carl

[member_41265]

Hi Carl,

Thank you for your advice, I know I have to try and keep a lid on my temper as if I don't it will just make matters worse, like you say. I have calmed down a bit now but have decided to consult another endocrinologist who is based a lot nearer to me than the current one. After 3 years of mucking about with my current endo I have had my fill of what I see as incompetence. She was originally recommended to me by the chairman of a local thyroid support group but I have spoken to the chairman recently and she has heard of 3 other members/patients in a similar situation who now have no confidence in that same endo. All are showing clear signs of pituitary failure (including the classic low TSH with low T4) but the endo will not pursue it. To be honest I think the problem is a woeful lack of knowledge. After all, It was actually her SHO that found my adrenal problem and pituitary tumour.

The GP who has done my new referral agreed with me that I need someone whom I can trust and have confidence in. Especially given the number of adrenal crises I've had and the fact that the endo does not see FSH and LH levels which are almost negligible as something that needs treatment. Unless everything is balanced then my symptoms will persist indefinitely. I have spoken to Alison and she was surprised about what I've been told but thinks once the day curve test results are in then the diagnosis may be more clear.

Time will tell I suppose but I need to feel better than I do now as I need sinus surgery because I have had 10 sinus infections during the past 18 months, three of which precipitated adrenal crises. Luckily the ENT consultant is very familiar with adrenal insufficiency and agrees that it is totally unacceptable to have to put up with it all. I do hope you're doing ok. Best wishes,

Debra.