So basically I have reacted reasonably well to steroids (especially sick day steroids as I am currently fighting a viral infection and needing to updose) and therefore my Endocrinologist is diagnosing me with adrenal insufficiency.
After a very long and very tedious battle with my GPs who keep writing on my medical record that I have no such thing 🙄
My concern is going forward given that for my GPs to support me, it would need for them to back down and accept that they were wrong when they kept saying I didn't have an Endocrinology problem and they arnt so whilst they are not being obstructive, they are not exactly being helpful either.
I went to see the out of hours GP today for help with updosing and the letter the Endocrinologist wrote to the GPs 3 weeks ago (which I have received a copy of) has still not appeared on my medical record so there was no record of my hydrocortisone treatment for him to look at so he basically had to go on my word.
The only mention of adrenal insufficiency on my record is where I have sent an email through to them asking them to acknowledge I am being treated for AI and the GP writing on my record (I paraphrase) "she's asked us to put it on her record so here it is basically".
So the out of hours doctor couldn't really help with my updosing as there was nothing for him to go on.
He said that I have to get it sorted with the GPs asap but my concern is how do I approach this given that there is such negative attitude to me regarding me having AI at the GPs?
I already have a complaint in with the GPs regarding this and the complaint I sent to the GMC about the situation but at this point I just want to make sure that my GPs are onboard with my diagnosis and not do what they have for the past 8 months which is dismiss me whilst I continue to deteriorate.
Should I write to the patient liaison and spell out my concerns that I feel a serious illness won't be taken seriously?
No point trying to speak to the practice manager as I've spoken to her once in 8 months though she has apparently been handling my complaint. She has said before that she is not clinical though.
So who should I try to speak to ensure they are taking this seriously?
Does that make sense?
Cheers 🤗
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The first paragraph doesn't really make sense I'm afraid. An endocrinologist won't be diagnosing you with adrenal insufficiency because you are reacting well to steroids. You will be diagnosed with adrenal insufficiency as a result of various tests and a likely list of symptoms.
Have you had a 9AM (or thereabouts) cortisol test done? If so, what were the results?
Have you had a synacthen test done? If so, what were the results?
Have your DHEA, aldosterone and sodium & potassium levels been checked?
Have you been checked for adrenal antibodies that can indicate Addison's (primary adrenal insufficiency)?
Have you been suffering with fatigue, dizziness, muscle aches & pains, cramp, salt cravings etc?
Based on the answers to those, your endocrinologist may diagnose you with adrenal insufficiency (primary/Addison's, secondary or tertiary).
Have you been prescribed hydrocortisone or prednisone tablets?
Have you been supplied with emergency injections?
If your endocrinologist has diagnosed you with adrenal insufficiency (or even if he/she hasn't), the endo should have written to your GP after your consultation. Unfortunately, those letters can take a month or more to arrive, which with adrenal insufficiency is far too long. However, through online apps such as PatientsKnowBest (nice name, if only doctors believed it), the NHS app, systmonline (yes, without the middle e) etc, you may be able to see letters and discharge notes long before the hard copy arrives. I often see blood test results that way before the medics do, and often see my discharge notes before I have been discharged. Whatever way you see it, that letter (or discharge note) should provide your GP with the diagnosis one way or another. Without that letter (or discharge note), a typical GP will do nothing. If the letter hasn't arrived, contact your endocrinologist's secretary or the endocrinology specialist nurse, who may be able to hurry it up (if only), or at least confirm whether it has been sent (more likely). In the case of a discharge note, contact the department that you were seen in (e.g. if in A&E, SDEC etc). If that fails, contact the Patient Liaison Service (PALS) at the hospital. If you have been prescribed hydrocortisone or prednisone for adrenal insufficiency and do not have a repeat prescription in place or do not have emergency injections, that is life-threatening so keep chasing the endocrinology team and escalate through the complaints procedure asap.
GPs and practice managers can be a right PITA. I am having a nightmare with mine over both adrenal insufficiency (confirmed diagnosis) and hypothyroidism (confirmed diagnosis), both of which are being handled badly. My GP practice put my life at risk in December, and now the endo & GP are both being a PITA with potential risk to life, so I do empathise with your predicament.
Hiya, yes I've had all the testing done and most tests were borderline low hence him diagnosing me with adrenal insufficiency. He thinks it's only just starting and we've caught it quite early and I am seeing some differences on the hydrocortisone. So yes, it's hydrocortisone he's prescribed.
I don't have emergency injections yet. I have a follow up appointment in a couple of weeks and he said we will go through sick days etc.....then so I might use the opportunity to tell him that my GPs are not being incredibly helpful and ask him to make it very clear in the letters that he's treating me for AI.
My Endocrinologist is private which is leading to some problems with the NHS GPs as they don't want anything to do with my health and just tell my endo to deal with it, even on a primary care level which is frustrating as he isn't my primary care doctor.
I have enough hydrocortisone for 6 weeks but I don't have it on repeat prescription yet or anything like that.
I have recieved my endos letter but it doesn't appear that the GPs have so I will ring and chase it all tomorrow as there is literally nothing on my NHS record currently about my AI.
I think I will also write an e mail to patient liaison expressing my concerns that my AI isn't been recognised at a primary care level.
It is a PITA just because the GPs are annoyed at being proved wrong.
The old private consultant meets NHS GP problem... Shouldn't be an issue, but some GPs are so anti-anything not NHS. My current GP will not accept blood test results that were not ordered by the GP or by an NHS hospital. I use MediChecks (it was MediChecks that identified my adrenal insufficiency and how close to crisis that I was), with blood drawn at my local NHS hospital and the testing done in an accredited laboratory. Even so, my GP will not accept their results. It was because of that that my getting hydrocortisone was delayed by 4 or 5 days, when I was a gnats whisker away from adrenal crisis.
As you have your endo's letter, scan it or photograph it, and email it to your GP today. If you don't have an email address, print out a copy and stick it through their door asap.
It is vital that your GP put your hydrocortisone and emergency injections on repeat prescription asap, without bureaucratic limits on getting more hydrocortisone so that (a) you have a reserve in case of supply chain issues, and (b) you can get more if you have to use extra for sick day rules or just because you need it on particular days (10/5/5 dosing doesn't suit everybody).
Has your endo identified the cause of your AI? Is it primary, secondary or tertiary? If it's primary or secondary, you will be on hydrocortisone (or equivalent) for life. If it's tertiary, in theory it might be reversible, but it's rare. Given the likelihood that you are on HC for life, you will want to be getting it on NHS prescription rather than paying for it. In England at least, you get free prescriptions if you have AI.
Ah thank you, that's all wonderful information, I really appreciate it ❤️ Yes my GPs are exactly the same as yours. I had a medichecks cortisol test come back at 35 and the GP just laughed and said "medichecks, is that even a real company"? And he wouldn't do anything about it and said he didn't have to follow NICE guidelines as they were only guidelines and not rules.
It was actually a day saliva test that first alerted us to something not being right with my cortisol but my GPs have just poo pooed it all along the way but finally I have both an Endocrinologist and a private GP with a biochemistry /biosciences background who both agree it's AI after alot of testing and both of whom want me on steroids. Actually the private GP is very angry about my GPs reaction to all this and has repeatedly said I deserve an apology for the way I've been treated.
So yes, the GPs literally won't accept any test results from me that arnt done by them. Idiots 🙄
Thank you, I will ring my GPs tomorrow morning because I do actually have quite a bad viral infection and I've struggled to know how much to updose as I haven't had any direction. I've doubled my dose today and I do feel like it's helping me keep on top of being really really poorly. I feel like my body is slurping up the steroid 🙈
But I had to see the out of hours doctor for my throat and he didn't have anything on my notes about the AI and couldn't really help with the updosing and he said I need to get that sorted with the GP as soon as possible.
I'm just taking an extra 5mgs as I need at the moment.
The endo initially has me on a very low dose every day, 5mgs, 2.5 and 2.5 because when I was on 10mgs, it felt too much for me and my heart was racing. I am managing the 5mgs and 2.5mgs much better.
He says it's most likely to be secondary AI as I've had some strange pituitary tests and also my T3 and T4 are not right but my ACTH is normal at 28 so he suspects there's some dysfunction of the HPA axis somewhere but he's going to treat it as Addisons with the sicks day rules etc and hydro dosage......I definitely don't have primary though as I passed the SST though it was slightly stunted with a rise of only 130 in 30 mins. My renin was high and my aldosterone and renin ratio was low and my prolactin was high aswell.
I am struggling to find my way with all this as my endo can't give me a definitive answer as to exactly what is going wrong where and that's a weird thing to deal with but the steroids have definitely helped me and I am able to walk again, albeit only a bit whereas before I was completely bed bound for months.
The endo says that once we have my hydro and AI stabilised then he can look at my low T3 and T4 but he cannot do that until he knows my cortisol is stable.
I'm not actually sure what I should call it when I speak to medical professionals because it's more likely to be secondary than Addison's but I have been calling it Addison's because they seem to recognise that more than adrenal insufficiency which they don't seem to understand especially as the hospital so should I keep calling it Addison's when technically it's probably actually secondary? Just for ease of communication with medical professionals going forward.
Yes, I wouldn't even mention saliva-based tests to my GP, despite them being useful.
If your cortisol blood test was done around 9AM and came back with 35nmol/L, that's not borderline. Mine was about the same. That's properly low. (Obviously, I'm a layperson, so this is to the best of my knowledge). MediChecks contacted me (rather than just putting the results on the website as usual) and said that I needed to see a doctor within 6 hours.
I don't know why you would be on 5/2.5/2.5 - you should ask your endo that. That is a very low dose. A standard maintenance dose that is still too low for many people is 10/5/5. Some endo's start people on a higher dose before dropping back to the maintenance dose (mine didn't, and I haven't managed to get an answer as to why not - my useless endo has gone off grid).
Sick day rules apply regardless of whether AI is primary, secondary or tertiary. The SST test doesn't determine primary vs secondary vs tertiary (edit: thinking about it, I suspect it can suggest secondary - if the adrenals work but the pituitary is having problems).
I like that your endo is addressing the AI before your T3 & T4. He/she is prioritising correctly, unlike my current endo (one of many reasons I plan to change endo).
It's a good question about whether to refer to Addison's Disease or whether to refer to Adrenal Insufficiency if it's secondary or tertiary. In forums such as this, I refer to mine as Adrenal Insufficiency as it's thought to be tertiary (although the endo hasn't completed diagnostic tests as far as I am concerned, so I don't consider that a definitive diagnosis), but in some other environments I call it Addison's even though mine probably isn't. If I think I am going into crisis, on the phone to 999 or in A&E reception, I will be shouting Addisonian Crisis as that is more likely to get attention.
On the subject of crisis, with a level of 35nmol/L, make sure that you get emergency injections asap - do not let that slip. As soon as your GP has the letter, start demanding a prescription for the injections. Alternatively, get a private prescription from your private endo or private GP. Once you have them, if you are going into crisis, do an injection before calling 999. Even if you get yourself to A&E and are in the waiting room, do the injection rather than wait for a medic to do anything. In the short time since my diagnosis, I have heard multiple stories of people going into crisis and not getting an injection for hours in A&E whilst the medics try to work out what is going on.
As for sick day rules, they say to double what you normally take, so 5/2.5/2.5 would become 10/5/5. However, it really depends on what you feel your body needs. I am normally on 10/5/5 or 10/5/5/5, but I am ill at the moment and am taking 10/5/5/5/5 rather than 20/10/10. Unfortunately, there is no real-time monitoring equipment available yet (it is in research currently), so it's up to the patient to judge what they need, and for the GP to provide enough on prescription to cope. The flip side is that taking too much is also bad - it can lead to Cushings. Even on a maintenance dose, you will likely want to supplement calcium (with D3 and possibly magnesium & K2) as HC can lead to osteopenia/osteoporosis, and have DEXA scans at some point
Ah thank you, you have some amazing knowledge and it's really helpful, cheers 🤗
Actually my endo wanted to start me on 10/5/5 but I felt a bit weird on the 10's, like I was actually overstimulated and my heart can be extremely irritable when starting new meds and I was nervous of triggering my heart problems off so it was me who asked him if I could drop to 5/2.5/2.5 and build up just to try and avoid any issues with my heart and it seems to be working ok as I can definitely tell a difference on the 5/2.5/2.5. The aim I think is to maintain me at 10/5/5 eventually.
My cortisol was actually only 35 that one time and it was done the day after steroid scalp injections but they still said that the steroid injections shouldn't have dropped my cortisol reading that low so something was up. Medichecks rang me aswell and took it seriously unlike my GP who actually laughed when I suggested I needed to go to hospital.
Since being off HRT, my cortisol at 9am is around 300 which the endo said is low but not drastically low. But he thinks odd things might be happening during the day / when I'm active because it's when I'm active (not laying in bed) or do anything physical that I get very shaky and feel very unwell.
So basically he thinks that my cortisol production is not ramping up when I am active so the one 9am cortisol reading isn't telling the story throughout the whole day. My saliva tests showed that my cortisol is none existent in the morning but does raise a little around lunchtime.
My private GP who is very experienced in diseases at a molecular level with his background said that the issues with the cortisol is why I am experiencing very severe adrenaline levels all the time. He can explain it better than me but he said to me that when cortisol levels arnt working properly, the body compensates by producing adrenaline which is why I am struggling very badly with being severely over symptomatic with adrenaline and shaking so much and struggling to stand. I am able to stand better since starting the steroids.
Yes my endo flagged my low T3 and T4 but he said it would be very dangerous to treat those with unresolved cortisol problems. I didn't fully understand but he said the thyroid meds could put me into a crisis if he put me on them without the AI being treated. He said we can look at them when I am on a stable dose of hydrocortisone.
Do you mind me asking how they test for tertiary AI? Are they going to test that for you? Tertiary comes from the hypothalamus doesn't it? Ive wondered if mine is tertiary just because my T3 and T4 problems are indicative of central hypothyroidism and I thought it all came from the hypothalamus so I was wondering if that's the root of my problems. My endo doesn't seem concerned about doing further testing though to try and figure out exactly where the problem is.
I will definitely get on with getting the emergency injections because a few times I've been in a & e and mentioned AI, I've literally just had blank faces and "oh you can ask the doctor about that when you see him in 8 hours 🙄🙈". I am also going to buy the cards from the addisons website and a medical alert bracelet.
My partner thinks I'm going a little overboard but you don't really want to take any chances when you don't fully know what it is that's wrong with you.
Ok, you have some inconsistent test results there. I wouldn't like to guess what's going on there. I would be tempted to lay off the scalp injections unless absolutely necessary, but that's me.
Tertiary AI is when it is caused by steroids (I have been on a steroid-based asthma inhaler for a couple of years or so). With primary (Addison's) there is a deficiency of Aldosterone, with secondary it's pituitary-related, with tertiary it's caused by steroids. Some endo's bundle tertiary and secondary together as secondary, just to confuse things even more. With mine, it is likely to be tertiary, but other things going on in my body/bloods mean that I wouldn't consider that definitive yet. I'd like to get a scan done on my right adrenal (which is just by the liver) as I have had very elevated GGT blood tests for some years (an enzyme that goes high when there is a liver problem). I've also had hyperhydrosis for many years (although it seems to have got better recently) which suggests a possible hypothalamus problem, so who knows...
Do buy the book from the Addison's shop too. It's only short, but it's useful.
Your partner needs to understand that before hydrocortisone, adrenal insufficiency was a death sentence. If you run out of HC at any time, depending on how suppressed your system is, it's not good which is why getting an unlimited repeat prescription and a reserve of a few months HC at all times is vital. If you go into crisis, your partner is likely to be the one injecting you, getting you to A&E and ensuring they get saline into you PDQ, so he/she really needs to understand how serious adrenal insufficiency is and get comfortable with how to inject.
Ah that's not even the worst of it. He was actually quite polite. I've had comments on my record such as (I paraphrase) "she needs to let this Endocrinology thing go or else she'll never find out what's wrong with her" through to "she does not have an endocrinology problem and I have repeatedly told her so". I can't remember the exact wording and I don't want to look and see.
They moved me to another practice after I complained about those comments but I am concerned that the two doctors that made those comments still have to triage me as they are the ones that do daily triage. It is very concerning that they won't take me seriously after those comments, especially as it doesn't seem like what is wrong with me is fully straightforward as I have had normal, borderline and low cortisol tests so the endocrinologist has said my cortisol levels fluctuate wildly making diagnosis a little harder.
I have rung today and said that I am concerned about my further treatment with my primary care providers so they are going to arrange for a doctor to discuss it with me. I just want to make sure that if I hit any problems such as running out of hydro, I am not going to hit running battles with them. It's a toughy but I don't want to change doctors as the surgery is literally over the road from me so very convenient with my health problems x
Unprofessional comments. This guy is taking everything personally and they aren't supposed to do that. Factual stuff is fine but all the snide commentary is not.
Yes I think that's exactly what's happened. They have taken it personally because they told me that I didn't have a Endocrinology problem but I knew that something was not adding up with my tests and my symptoms so I pushed for further help and discovered that my gut instinct was correct and they were wrong. And since then, I think they've been quite angry that they have been proved wrong and it's led to a very uncomfortable situation. To be honest I genuinely don't care in they feel bruised that they were wrong, all I care about is feeling better and being safe with my condition so that's what I'm going to concentrate on and tell them that I really don't care who was right or wrong or what, just that I want to make sure my primary care provider can support me properly with this illness. Luckily the Endocrinologist is great which is a huge help.
Hello there,just wanted to say that it looks like you've found a kindred soul and there is a light at the end of the tunnel for you.Have followed your story and am pleased to see that someone is listening to you and helping you now.Very best wishes with it all.
Ah thank you, that's very kind of you. It's been a struggle and things are still far from clear but at least I am in a position of being able to stand albeit for short periods after about 6 months flat on my back 😬 and I am hoping that the warmer summer months coming will help me to recover aswell 😊
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