my amazing endo

sorry - had to share this, and i know its not asthma (but its because of my stupid lungs so i thought i could)

After weeks and weeks of my GP becoming a nightmare - he turned from really great and supportive to awful really fast. he's gone on a medication cull, despite the fact that varapamil was slowing my HR down by at least 40bpm and eliminating palpitations at rest completely, that's gone. as with calcuim and iron (which i can stand to lose), then we lost one of my antidepressants, despite the fact that we've still not actually found a cocktail or dose that works for me yet, and once he'd run out of things he felt were in his relm as GP in terms of my breathing he turned on my steroids. Despite the fact that i've been throwing up frequently for most of this term, he had started really telling me off for using injections to the point that there were mornings where i sat by the loo throwing up steroids for several hours to try and keep any dose down. There were days when i gave up completely on trying to take them, as GP had assured me that my adrenals would be working fine now id been off pred for a good few weeks, and so injections never necessary and tablets probably not needed. When i actually started passing out and/or being able to get about by means other than crawling i rang 111 but refused to go to A&E because there couldnt be a 'real' issue, and so went to OOH who told me to give myself an injection immediately, and yes, i felt an awful lot better very fast, even the nausea subsided, but my GP said that steroids can give a bit of a 'natural high' and that's probably what i was feeling.

he had no explanation for the nausea, vomiting, stomach pains, fatigue, dizziness, shakes, tachycardia etc. other than saying i was being over-medicated and that the last thing we should be doing is giving me anti-emetics (he relented and gave me some IM cyclizine for a weekend away) but every time i ended up at OOH they were giving me anti-emetics as i looked so dreadful. Yet he was willing to increase my domperidone as its being given for a different reason even though the levels he has increased it to give me side effects. He is saying im clearly over-thinking my health and yet is dropping the meds that would help if that was the issue (and also - interesting that cons seem to disagree but hey - what do they know!?!) ie anti-depressants. Even though my councellor reccomended i talked to GP about starting anti-depressants or changing dose he criticised me for jumping straight to pills (even though he has in the past). I have no idea why he has changed so dramatically. Thing is, it is well known that he has sort of taken on my case within the practice, so most other GPs are reluctant to change anything and leave it to him, so my only real other option would be to change GP practices which would be soooo inconvenient. the practice is set up in a really efficient way and there is a centre on campus and in town so its always easy to get to.

anyway - that turned into a bit of a long rant - but yeah so i had my endo appt this morning and i knew my GP had written to my endo cons to say that i was taking too many injections and doubling my dose too often. and so i was dreading being told off for it, because it is very very hard to throw up pills for hours, and it is very hard to feel so ill all the time and not have anyone do anything. so by the time i got there (having skipped my morning hydro in case i could have another morning cortisol) i was this shakey and anxious mess and she was a STAR!!! cannot say it enough. she made it completely clear that i had NOT taken too many injections, and she would have advised me to have more if she'd been with me, she said that my GP reccomending i avoid steroids wherever possible was very dangerous. she said that even if my adrenal glands had completely started functioning again i had no way of knowing that (esp as SOMETHING was making me so ill) and so the only thing she would have wanted me to do is make sure i was getting my hydro by any means necessary. and so that i had done completely the right thing. she said she saw nothing about me that suggested i was over-using steroids in terms of hydro, but obvs the pred has had some effect which IS unavoidable, she said that actually my list of meds is yes, long, and yes, complex, but also, sadly, needed to keep me well and that actually we've not got to the point where i should be tolerating such hideous palpitations and tachycardia all the time just because its sinus tachy, and that inappropriate sinus tachy can also be treated so should be given that i wasnt getting side effects. She said i was clearly very very anxious and made completely sure there was nothing i wanted to talk about (even on a personal level if i needed) and was concerned that my GP was going to convince me to stop taking steroids. She said she'd picked up the tone in the letter from my GP and had been really concerned i'd have stopped steroids before i saw her and so might have needed admitting (i think she's considered having a bed ready for me just in case lol!) to be stabilised. she said that being on a lot of meds probably put me at risk for a lot of other health issues that could cause nausea and vomiting that my GP should have looked into, and then arranged a short synacthen test to be done then and there so that we could work out a plan!!

turns out i am still very very adrenal insufficient, my results were slightly better than last time, but i dont think its enough to be significant. my pre-synacthen was too small to measure properly, and my post synacthen was 81 (for those who know cortisol type numbers) and last time i was only ever under 50 so we've gone up at least 31 points, tiny, but something!! nurse gave me a ring today to make sure i injected as much as i wanted and if i needed more vials and GP refused to get in touch with them (i have 4 atm so im not too concerned itll be an urgent thing) and to make sure i was still going to take my hydro (i was really upset and had said it would be easier to feel ill all the time and never take steroids than have the huge ups and downs i was having) and to ring if i had any issues with GP or anyone!! So im seeing cons again on the 6th!!

Just wanted to share this, am so relieved that my symptoms ARE how i'm saying they are, and im not making a fuss over nothing!! thank goodness for good consultants!!

4 Replies

  • I am SOOOO glad you have a good endo - and very sorry you are having to go through this with your GP.

    I don't know if it would do any good, but perhaps you, he/she, and someone you trust should meet with him - it doesn't sound like changing practices is ideal and if there is something that can be done to get things back on track it would be good. Then again, if he's decided he knows better than your endo and even the endo can't get through to him, you may have little choice but to change practices.

    I'm beginning to think that doctoring a person with on-going health conditions is a special art and not all doctors are good at it - some can handle it and even see it as the reason for choosing general practice. But others burn out after a few months when they realize that all their efforts to fix things are going no where. The longer and more frequently one deals with a person, the more likely one's own needs start colouring one's reactions. Unlike psychologists, most medical doctors aren't specifically trained to be aware of counter-transference issues, i.e. being aware that their own needs and expectations can affect how they see the patient and possibly their clinical judgement as well. If they are having problems with the idea of not being able to ""fix"" things, with a young person not being well (""It just shouldn't be""), feeling out of their depth but not feeling ok with saying so, or any number of other issues, it flies under the radar or gets shoved into ""can't be an issue because it isn't supposed to be an issue pile"". The result, I think, is medical advice that starts making less and less sense.

    My former GP also did a sort of about face on me last spring - after months of being amazingly helpful, he suddenly decided that maybe I didn't have asthma after all after having two flares within one week that were bad enough to go to urgent care (actually more like A&E without an operating theatre and only have one resus bay). After the first one he was sympathetic and told me ""Its not fair you have to go through this"". After the second one, he decided it couldn't possibly be asthma despite my having been treated for asthma. Between the two visits, nothing had changed aside from my frequent flares driving home the point that I was really hard to control despite being on fairly high doses of pred.

    So he wanted to give me an SSRI. By his *own* admission, I had given no signs or symptoms of either anxiety or depression during our frequent interactions. Nor did he even ask any sort of question that would allow him to assess whether or not my inner life (feelings, cognitions) was symptomatic. He agreed he couldn't even use my breathing as a measure of success of SSRI treatment, because my breathing was so up and down and had so many different (and very standard) asthma triggers there was no way to tell what caused what. His sole explanation for deciding to treat an asymptomatic ""anxiety"" disorder was ""maybe its an unusual presentation"" (no standard cognitive/affective/behavioral symptoms) - completely neglecting the fact that he was rejecting the asthma diagnosis because it too was an unusual presentation - i.e. only partially responsive to steroids. He was completely oblivious to the illogic there - using the exact same argument to both assert one diagnosis and reject another.

    He even acknowledged that he had a need to ""do something"" (which is pretty awesome in my opinion), but he didn't do the next step and see that maybe this was his need and this was a time to ""not do"". This first time he did backed off the idea when I told him that I was fine with ""lets try this and see - provided he had a clear test of success"". At that point he realized he had no outcome he could use to measure the success of an SSRI.

    After the SSRI meeting, I scheduled a meeting to discuss what was going on the SSRI meeting. During that meeting I offered to have a formal psychological evaluation if he really wanted to raise this issue again in the future. He never asked me to do this, so I assumed the matter was dropped.

    We made it though one hospitalization (May), and a fairly significant exacerbation that pushed pred up yet again (early June).

    Then at the end of June, three months later, when I went to see him because I was coughing up slightly rubbery yellow phlegm, he all but accused me of it being in my head and made no changes in treatment - he sent me for a chest X-ray to rule out pneumonia, but not for a blood test to check for signs of infection. Then a few weeks later when the cough was causing serious collateral damage in several places in my body - pulled muscles in the chest, a throat so irritated from coughing it was spasming (confirmed by ENT), coughs so forceful that they were causing bleeding hemmoroids and bladder voiding so forceful I couldn't do it on purpose if I tried ---- he all but told me I had been lying to him about symptoms. He told me he would refuse to treat the cough even if it remained after I was off prednisone. When I told him that ventolin consistently suppressed the cough, he told me I was imagining it. If I wanted to get better I needed to see a shrink not him.

    My husband summarized the meeting as ""I think he's trying to fire you as a patient"".

    I didn't go back to him at that point because I really needed someone to help with the cough - although ventolin suppressed it and helped me heal from the collateral damage, when the cough was active I was coughing up mucus which isn't normal for me. Blood tests showed was a bacterial infection after all.

    Changing practices was an uncertain experience. I was really reluctant to start all over with a new doctor. However, I am much happier with this new doctor. I can't guarantee he won't eventually get frustrated. However, since I came to him as a patient with on-going unresolved health issues, he knew what he was getting into from the get-go. Also in September when I narrowly avoided a second hospitalization, we talked briefly about how *he* felt about the possibility that I may not be all that fixable, short of (a) the asthma deciding to spontaneously go away (b) other things start going wrong and an alternate diagnosis can be found. (standard alternate diagnosis have already been ruled out).

    If you do change practices, it might be worthwhile to sound out the gp who will be your primary contact about how he feels about dealing with complex unresolved long running medical situations.

  • Good doctors are worth their weight in gold! Im finding myself slightly clingy towards my cons at the moment, a childish response but with her I feel safe and relatively understood, whereas some of the others dont seem to 'get' either me or my asthma. My GP is exceptional too - like Beth, Ive had one who just got out of their depth and couldnt seem to handle that my asthma was beyone them, so tried just stopping the pred etc! My current one is calm, so laid back she is horizontal, and doesnt seem....

  • afraid of my asthma the way some are. Means I trust her judgement and will usually come to hospital when she says I should as I know she doesnt just say it every time!

    Im so pleased youre getting good support from your endo, chronic illness is awful to deal with, especially when youre young and just trying to get on with life.

  • Phew!

    Soph - it's a minefield eh? Thank goodness you have awesome endo... and endo nurses, to pick up the pieces. (I'm still stuck with the one I already had).

    It's really hard when you're going into adrenal crisis and you don't know why - I always want a 'justification' for injecting or upping my dose, but sometimes we just don't know what it is that our body is fighting.

    I've been injecting since Tuesday - but only my official sick day dose. Only started crisis doses after I'd vomited last night. On abx now as I'm tachy all the time - saw a GP locum this morning who said my ears aren't great but wouldn't normally do abx for that, but clearly I'm fighting something so we should help my body out if we can - if it's viral then the abx won't hurt really.

    The hardest bit is that when my cortisol is low I feel paranoid, suicidally depressed, like I'm worthless and useless and wasting everybody's time... all of that makes accessing help appropriately really tough - but the endo nurses tell me that lots of people feel the same. The chest-crushing anxiety is common.

    In terms of whether cortisol of 81 is an improvement on 50 - the cut off for ""you need replacement steroids"" is several hundred. So - nope, your adrenals haven't recovered - I don't think there's a meaningful difference between 50 and 80.

    I get really panicked that they're going to take me off my steroids and tell me there's nowt wrong with me and to stop wasting their time. Odd, eh?

    Your GP is probably invigorated by a recent NHS-wide push on the perils of polypharmacy - a lot of patients are on medication to control the side effects of their medication... etc. Lots of patients are on things like AdCal and Iron which are then trashing their digestive system and they're having to take Omeprazole to cope - and then the omeprazole nicks all their 'iums - and they don't get the benefit of the metals in their diet, let alone their supplements! GPs are being asked to look again at what they're prescribing, particularly repeats, and see what might be harming the patient rather than helping them. (But it sounds like yours wasn't applying much thought to that process).

    I don't think Drs always appreciate quite how long their lever is - thinking in mechanics terms. I ended up wigging out on mine on Tuesday and refusing a referral to GI because I cannot face another Dr - generally I find GPs to be better than specialists, but I'm just fed up of being humiliated / banging my head against the walls of their furrows / feeling criticised for not having the 'classic' presentation or not being textbook... for 'noticing' a symptom that others wouldn't pay attention to... etc etc.

    But I don't think they generally *mean* to be quite so damaging to us - they just really don't have a clue how deeply they can affect us, or what we might read in to their questions or statements. Perhaps you could make an appt to just talk this through with your GP? I'm guessing your endo will be on the phone or write to them anyway - and correct their dodgy position on the steroids. Even in the same endo dept as yours... well - you were there when they were messing up my doses on the endo ward... ! They didn't mean to harm me - they just had one concern that was so forefront in their minds that they lost sight of how important it was not to screw up my steroid taper.

    Good luck Soph, thinking of you,


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