Has anybody bought themselves an emergency steroid injection?

I need to have a wisdom tooth out soon and am worried about the whole adrenal suppression issue. I am self medicating with 20mg hydrocortisone, for low adrenal function, and am aware that, after 5 years of doing this, I probably now have adrenal suppression (ie. my adrenals may not be able to do much on their own anymore) and that this can turn into a life-threatening situation during tooth extraction. This is probably very unlikely to happen, but I want to be properly prepared - apparently ambulances either don't carry emergency steroid injections, or they do but prefer to get the patient to hospital for assessment by doctors, rather than inject the patient themselves........but my nearest hospital is an hour's drive away!

So, I want to buy my own emergency steroid injection. My doctor doesn't accept that the cause of my "ME" is hypothyroidism and poor adrenal function, hence why I've been self medicating with hydrocortisone (and T3) and why I need to buy an emergency injection without a prescription.

The online pharmacy I buy my hydrocortisone tablets from doesn't sell the injections. Has anyone had any success buying emergency steroid injections without prescription?? (Either for dental work or to carry in their handbags in case of emergency).

22 Replies

oldestnewest
  • Hi, you probably havent fried your adrenals.... 20mg of cortisone is supposed to be high enough to help but not too high. Safe uses of cortisone by mccormack jefferies is the book that explains it all. (Though i havent read it) amazon.com/Safe-Uses-Cortis...

    Have you just stayed on 20 all the time? Not attempted to cut it down? I took slightly more for a while and weaned down over two years.. I got most of my info from the yahoo adrenals forum. They now have a website. rt3-adrenals.org .

    I have had lots of teeth problems and the numbing stuff used to really knock me about... I used to have to sleep for a day after a dental visit. Then i tried stress dosing beforehand.

    Although i no longer take cortisone regularly, today i had to go to the dentist. I took 5 mg two hours before i went,then after sitting in the chair for 1 hour 50 minutes, i took another 5 mg. and I have been fine.

    Suggest you go over to the adrenal forum, vial the website, and ask Val about stress dosing. She is really helpful.

    Best of luck! I have to go back to the dentist for an hour on Friday....

    Xx G

  • Hi Galathea

    Thanks so much for responding and for the very useful info and links.

    I haven't read that book, but I had a look at it on Amazon and it seems probably similar to Dr Peatfields approach to steroids (reading his book was the reason I started using them). I'm inclined to agree with their "safe use" thoughts, but can't shake the worry that me using steroids for this long has caused adrenal suppression. When I was googling the emergency steroid injections, I came across advice for pituitary/Addison's patients, who seem to also have a standard hydrocortisone dose of 20mg, saying how important it is for them to carry their emergency injection at all times. This has put the fear of God into me and made me think I should try and get one.

    Until last year I was actually taking 30mg, but have gradually reduced it to 20mg, as I want to try and come off it eventually. I'm going to carry on with the slow reduction, but it's going to take a little while i guess.

    Really good to know about the yahoo forum. I will definitely take a look at/join that. I did try to join a Facebook adrenal group, but it's a closed group and I had no responses to my messages asking to join. So finding out about the yahoo group is really really useful - thanks :) .

    Good luck with your dentist appointment on Friday! And thanks again for taking the time to respond to my post :).

    Xx

  • Hi surgical guidelines can be found here :http://www.addisons.org.uk/forum/index.php?/files/download/4-adshg-surgical-guidelines/

    I am steroid dependant and would double up if having to have a tooth removed and would take extra after depending on how I was feeling. I always carry my emergancy injection with me though and my dentist is aware of my condition.

    The only time I have had to use the injection is if I have d&v ,usually I can keep myself safe using tablets .

    Have you told your dentist? Mine was surprisingly knowledgable.

    I expect you do have some adrenal reserve as that is a dose that they consider you can be weaned off but obviously you shouldn't rely on that.

    Rx

  • What is d&v?

  • Diarrhea and vomiting-

  • Hi Ratkinson

    Thanks for responding. The doubling up advice is really useful, I've seen that in some other guidelines somewhere but it's always more useful to hear from actual people (such as yourself and the other lovely people on this forum) and find out what they do.

    The thing that worries me though, is that the surgical guidelines given by the Addison's link you gave, state that a 100mg steroid injection should be routinely given before tooth extraction......although I can't tell if they mean tooth extraction performed under GENERAL anaesthetic (not just local, which I am having). Not sure whether that makes a difference or not.

    I have told my dentist about the steroids, but once he found out I am self-medicating, he became quite dismissive about the whole thing. He's generally quite brusque with me and I get the distinct impression that he thinks I'm some sort of neurotic hypochondriac. When I try to tell him how ill I am, when he does the routine "how's your general health" thing at check ups, I can see him inwardly rolling his eyes! I must look completely fine to him, but the reality is very, very different (I'm mainly bedbound.......just the act of getting myself to the dental surgery is a major achievement, even without any dental work!).

    But, whether or not I can get hold of the injection, I will remind him that I may not be able to respond adrenally to the demands of the surgery and that he will need to call an ambulance if I become unresponsive. Scary stuff..... :( . I will double up on my tablets also.

    Thanks again for taking the time to reply :) .

    Xx

  • Have you found using t3 only and hc has cured your m.e? I use both too, but am still bed bound 50% of the day.

  • Hello sulemaye

    No, they haven't made any difference whatsoever :( . I'm mainly bedbound and have been since before I started taking them

    Sorry to hear you're struggling too.

    Xx

  • I have seen some symptoms stabilise on HC but ultimately it's all a symptom of the m.e the need for t3 and HC. I get so irritated when people try to tell me I just need to take NDT or one dose of t3 or whatever and that m.e doesn't exist because it clearly does, it just isn't clear what is causing it for each individual. Something is stressing the body hence the exhausted adrenals and too much rt3 etc. I have worked my way through so many approaches but I am fortunate to have fought tooth and nail for PIP and I use that money in part to fund my health treatments. I am finding the optimum health clinic nutritionist the most comprehensive and useful and am inching forward. It's hell though isn't it, the nebulous unpredictability, to be honest if I'd had a choice I'd rather have had cancer because I'd have either got my life back five years ago or I'd be dead. At least I'd know where I was and wouldn't have everyone looking at me sideways because they believe NICE and the media and think it's all in my head!

  • Yeah, I know what you mean about the cancer thing. I feel the same way! It would probably sound very extreme and a bit odd, if we were to say that to someone who was healthy, but it's an indication of just how frustrating this type of illness is. It is hell. There's no clear treatment path or prognosis. There's nothing. That's interesting to hear about the progress you've been making with the nutritionist. I agree with you that ME is a blanket term and the cause could be different for each person. The hard part is finding the cause, especially as most doctors seem to think we should just accept the illness and do "pacing"!!! Either that or they don't believe we're ill at all! Anyway, good luck with everything. xx

  • Exactly. It is the lack of prognosis, lack of anything, like being dropped into a big dark well where you can't even see the sky and you are forgotten.

  • Chooselife, what time of day do you take your 20 mcg HC? If you only take it in the morning, and allow the adrenals to work for themselves the rest of the day, then they will not be suppressed. Actually, I hardly think you could live on 20 mcg HC if your adrenals were suppressed! You'd need more than that.

  • 20mg is a standard replacement dose , usually split 10, 5 and 5 mg (morning , lunch and tea time)to try and replicate normal daily rhythm. That's what I take and I have no function of my own, obviously it depends on individuals body weight , how well it is absorbed etc.

    As greygoose says, if you take that all at once in the morning six hours later you will have none from the tablet left (assuming you are taking hydrocortisone and not prednisolone) and you will be relying on your own.

  • Hi Ratkinson - I take it split throughout the day too :( .

    Xx

  • Hi grey goose

    Thanks for responding. I take the 20mg split throughout the day, unfortunately :( .

    I used to think 20mg was a small dose too, but have since found out that it's the standard dose for Addison's....... and various bits and pieces I've found on the internet say that a dose of 20mg, for 3 months or more, can cause suppression and these patients need to carry the emergency steroid injection.

    So I was curious to find out what others who are self medicating think and how they deal with eg. tooth extraction, as I hadn't come across anyone on this forum taking about the emergency injection and it doesn't seem possible to buy one without a prescription. Perhaps it isn't as necessary as I think it is and I'm worrying over nothing.

    I'll have a bit more of a hunt around, but I'm probably going to have to attend my tooth extraction with just prior stress dosing and hope for the best!!

    Xx

  • My doctor told me that, for adrenal fatigue, you should never take HC after 1.0 pm. You take it in the morning, to give the adrenals a helping hand at their busiest time, and then let them get on with it for the rest of the day, just so that they don't shut down. And he prescribed me a lot higher dose than 20 mcg! 40 mcg first thing, and 20 mcg around lunchtime. And, he said, I coud take more if I felt extra stressed. He gave me a large prescription to cover that.

    Adrenal fatigue is not the same as Addison's. Of course, with Addison's, you need to take small doses throughout he day, but you really, really don't with adrenal fatigue. Doing it his way, I was able to come of HC after a couple of years, and my adrenals are now pretty good.

    How long have you been taking it that way? Could you not slowly wean yourself off the afternoon dose, but making it smaller and smaller, and adding the extra onto the morning dose?

  • Hi Grey Goose. Sorry for such a long delay in responding. That's really interesting to hear your regimen. I'm going to try and come off it completely, at some point, but in the meantime I will definitely try to make the afternoon dose smaller and add the extra to the morning dose - good suggestion. xx

  • I developed adrenal insufficiency after taking steroids. It was awful. My life was hell. Fatigue was horrendous.

    I eventually realised that unless I could get my own adrenals to work again, I would be stuck for life supplementing and stress dosing - which isn't ideal. Steriods are synthetic and not the same as what your own body produces, they cause osteoporosis and insulin resistance amongst other problems.

    I Switched to hydrocortisone and began tapering very very slowly. My original dose was 20mg, split into 3 doses. 10mg at 7am, 5mg at noon and 5mg at 5pm.

    I reduced by 2.5mg every 2 months til I got to 10mg. Then dropped 2.5mg per month.

    I had taken steroids for 4 years. And it took 3 years for my adrenals to wake up. But they have. It's still on low side, but that's better than being steriod dependant.

    20mg of HC can definitely suppress your adrenals, as it's the equivalent to what your body would produce in an average day, and amounts to 5mg of prednisone.

    you should probably have a short synachen test to find out if your adrenals are functioning ok or have been suppressed.

    Ps. I used to have to carry an injection for emergencies and it comes in 100mg. That's the emergency dosage. But I don't think it's available without a prescription. Normally, when stress dosing to prevent an emergency, you just take double hydrocortisone in the morning. Ie day you have of your dental work, X

  • Hello behappy1

    Thanks for responding. Really interesting to hear your story, though sorry you had such a tough time.

    Do you mind if I ask, how did you know you had adrenal suppression - was it via the short synacthen test that you mentioned? I haven't pushed for that test, partly because I thought that once you've started taking steroids the test won't give a true representation of the situation (but I could be wrong?), partly because I'm not actually well enough to get to the hospital and partly because there's not a chance in hell my GP would agree to refer me for it (also, although it would obviously be very useful to know if I had suppression, I wouldn't be able to get the test done in time for my dental appointment, which has already been delayed too long and is now a fairly urgent case 😞 ).

    Great that your adrenals have woken up a bit - that gives me a lot of hope for the future 😃 .

    Thanks again for taking the time to respond.

    Xx

  • Hello sorry for late reply!

    I knew I had adrenal insufficiency from my symptoms and googling. I was already on steroids due to lupus. I was taking 5mg predisolne daily. But sometimes I was missing a dose.

    I had a couple of strange episodes which made me think something was wrong. One time I was out in Tescos. Started sweating, feeling disorientated and very overwhelmed. Then, threw up. Then one night I felt Such a great thirst and sudden urge to pee . I drank drink 22 glasses of water and sat on loo weeing/drinking. This was over a 4 hour period. It was very odd.

    Then few times started getting severe sharp pain in my lower back, around my kidney area at night time. I had insomnia, malaise and fatigue too. Mentally I felt a mess. Body ached a lot. Some days I couldn't get out of bed. I also noticed my gums got darker and so did my top lip.

    I went to my doctor and told him I was convinced I had adrenal insufficiency and he said he wasn't sure. He did a cortisol test which came back completely normal. I had to go back to dr again as I did more research and realised in many patients a normal cortisol test doesn't exclude adrenal insufficiency. It's whether your adrenals can pump out more cortisol at times of stress.

    I was already taking steroids because of lupus. Dr agreed to short synachen.I had it that week. It confirmed my adrenals were not able to respond much to the acth injection. It was repeated a week later and again didn't rise sufficiently. That confirmed adrenal insufficiency for the NHS.

    I decided to go private to recheck and paid for a load of different tests. Confirmed adrenal insufficiency and vitD deficiency.

    If you think you have adrenal insufficiency the dr will have to send you for your test. It's regarded as a potentially life threatening condition which needs properly medicating.

    It doesn't matter that you're on steroids or hydrocortisone. They only lasts 4-8 hours per pill.

    You basically don't take any on the morning of the test. the day itself, you just have a blood test, then an acth injection and then another blood test taken either 30/60 mins later. After that you take your hydrocortisone and go home.

    Your GP has to send you if you have any symptoms. I have had 11 short synachen tests now, to keep monitoring . Xx

  • Hi there

    Now it's my turn to apologise for a late reply! Thanks for giving so much information, I found it really useful and extremely interesting.

    I'm wondering if, because you were on prescribed steroids, your GP might have been more open to the possibility of adrenal suppression than mine - mine doesn't know I am taking steroids, so I would either have to admit to that, or try and persuade him (without telling him about the steroids) that I might have adrenal problems. If I come clean about the steroids, my guess is that he'll be so furious about that, he won't entertain any sort of testing at all. I once mentioned that I take my temperature and blood pressure several times a day and he told me off for being "very neurotic"! According to him, it seems that taking any sort of interest in one's health indicates hypochondria at the highest level. I've tried different GPs at my surgery (there are only 4 GPs there) and he's the best one (believe it or not!). I can't change surgeries because they are very strict about the catchment areas (and I can't afford to go private).

    I will ask him about the tests, but I'm pretty sure that, even if he agreed to the cortisol test, if it came back normal he wouldn't let me have the other test :( . I'll try though!

    Thanks so much again, for the advice though. At least I know what I should be aiming for and if I keep on at the GP about this, he might eventually give in, even if just to shut me up! xx

  • I can relate to what you're saying. I used to worry and get told off myself - stay of dr Goggle, you must be depressed and that's brining on your symptoms.

    Until I took charge and said no, I know my body and what is happening isnt right. Yes I have looked at goggle and I'm glad I have because I know what it may be. And what investigations I want. If I appear depressed that's only because I don't feel well.

    Look, lie if you need to but do get the test done. Just having a cortisol test will not necessary pick up adrenal insufficiency. You need the short synachen test.

    You could say, I wasn't feeling good, very low energy and dizzy and took some Chinese herbs for several months which lifted me a bit. Since discovered they have got steroids in them. Binned them but symptoms now even worse, and feel weak?

    I say this as a suggestion because GP's worry when you people take Chinese herbs . Alarms bells ring and get tests done. ,👍

You may also like...