Correspinding recently with our great forum friend Twitchy helped me have this idea for a post.
My trusted GP of 24 years has retired recently and I'm having to start a new relationship with another which I'm not finding easy . I know it will take time but. Iits also coinciding with a new health mystery why I'm getting low blood sugar but I'm not a diabetic which isn't helping?.
I would love to read your tips and experiences with this specially as it gets imposed on us and is another aspect of health we have to deal with!. Also I wonder with our new doctors how muchand how soon do we reveal we're 'Expert Patients 'with knowledge of our complex conditions ?. This is an aspect in struggling with also!.
Thanks , I'm sure I will get some good replies. Hope also you like the enclosed pic and are keeping as well as possible.
MistyX
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misty14
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I too have recently had a letter to say my GP is retiring in Dec of this year. I’m gutted.
Get on really well with him and he actually listens which can’t be said for many.
I’ve been told who his patients are being transferred to, a locum who has covered at the med ctr previously, but never heard of him so time will tell. Cross fingers. Not always great with change 😢
Re low blood sugar could this be a form of hypoglycaemia?
Thanks for your lovely reply. How are you and your mum doing?. I'm sorry your facing GP retirement in Dec. It is gutting when we are so reliant on them for help and support and will so miss their attentiveness!. I too was told who would be replacing him and I wasn't sure she would be the right one so I asked if I could change to my 🌟GP no 2 as I needed experience. My retired GP asked him for me and he agreed to have me on his list!. He wants to see me regularly to get to know me. I did learn that if you want to change you can write a letter to the practice asking to go on your preferred doctors list!. Maybe you could do this if it doesn't work out with the locum hollydebs?. I know different practises have different ways of doing things but you could ask. Good luck for when you see your new one. Hope it works out.
I'm altering my diet and it's improving some of my low blood sugar symptoms thanks. X
Thanks Misty. Worth knowing if me & the new GP don’t click!
Mums not improving as well as I’d hoped so I’ve had to take the decision to take an unpaid sabbatical from work. They have granted 6 months for me to see if caring is where I want to be. Going through the benefits minefield at the moment. Didn’t realise how much they make you jump through hoops for so little. Nightmare. So far it’s going ok xx
So sorry hollydebs you've had to take a six month sabbatical for your mum!. If you need any advice and help re benefits then Citizens Advice will be able to steer you thru the benefits nightmare!. Might save some stress!. You may get a phone call re north Devion C&C in St. John's garden centre!. It's a trial to see interest!. Take care yourself. Xx
Sorry misty , no experience of change of doctor,I hope you are able to settle in with new one and can work together well . Loving your hedgehog pic as always 😀 good luck xx
On the hypoglycaemia front, borderline low blood sugar is a possible indicator of adrenal insufficiency, so do get that checked out. As you know, I had to do a home saliva cortisol test to push my medics in this direction. The guide for GPs that the Addison's Disease self help group publishes is very good for explaining what to look for. addisons.org.uk/files/file/...
Re the new GP: I've tended to shop around within may practice and now have one or two whom I favour and one or two I avoid. When booking I ask for the better ones by name and decline others.
I try to move things on with some sharp questioning to get over any 'dumbing down' e.g a general comment like 'Your tests show some inflammation', gets a question like which indicators and what are the numbers. But I'm not sure what difference it makes. Some doctors like having expert patients, some definitely do not! x
Thanks so much Whisperit for your helpful and great reply!. I shall look at your link with interest as I did also look at adrenal insufficiency or Addisons and realised I do have quite a few of the symptoms. Trouble is they can occur with other conditions so I keep telling myself this to stop worrying!. My new GP is onto it I think as he said he'd ring the lab about a specialist test when he learnt I've been on steroids for 26 years!. I see him on 7/9 and I'm going to have to be more honest and open and having your experiences will help me do it hence my post!.
I love your way of asking gp's important questions which I do try to do myself. What is holding me back is not knowing whether new GP likes an expert patient or not!. I so agree that not all doctors do so I'm tiptoeing my way finding out I guess and it takes time. It's good at your practice that you can see different doctors so can avoid the problem ones!. We have a named GP that we stick to and I m trying out 🌟GP no 2 who I'd been to a few times when my retired GP was on hols!.
Thanks so much for your help and I hope your health is improving. Any signs of your hedgies?. X
You're right about not getting to worried about speculative possibilities, and yes, adrenal insufficiency is one of those. But after being on steroids for 26 years, it is worth checking.
My surgery also operates on a named GP basis, which is sensible of course, as it's no good if you have to keep explaining everything from scratch each time you go in and see a different doctor. I stuck with mine for that reason, until I finally got so exasperated with his passivity that I decided to make the break and just asked the receptionist whether there was someone else I could see instead and kept saying that until they got the message!
I'm a bit worried about Hedgewig. S/he appeared once in June, but since then, no sign. x
Thanks so much Whisperit for the Addisons groups GP info. There are a lot of symptoms that could fit so important I'm tested!. I guess I just can't face having another auto- immune illness but I've got to face it. Have had a very poorly day today but it varies so much. . We have to be so persistent and I'm glad your change of GP helped you. Sorry about hedgewig. Hope he appears. I've just bought a cute hedgehog bookmark which says they can visit up to ten gardens on their nicturnal wanderings . Would you believe it?. TAKE CARE and thanks so much againX
My GP retired three years ago and that is when I switched to my 🌟 GP. I asked for a double appointment the first time I saw him so I had time to explain exactly what was happening to me. Not having a diagnosis other than UCTD didn’t make this easy. I shouldn’t have worried though as my 🌟 GP turns out to be better than my GP who retired! My worry now is that he has cut his hours to part time as he approaches retirement too 😩 There is another GP in the practice who I have seen and is almost as big a 🌟. He will be the GP I move to when the time comes as he is about 20 years of retirement!
Many thanks for your very helpful reply and link to non diabetic hypoglycaemia!. It's a very interesting read. I think my new GP is onto it as he's talked about a specialist blood test for me. I see him on 7/9 to discuss how I am and must be more open about all this!. I didn't realise you first had had a diagnosis of UCTD like me now with possibilility if it changing to Behcets!.
Interesting you asked for a longer appt with your 🌟GP to explain your illness. Our surgery said my 🌟GP no 2 who I've switched to does this as a matter of course!. I found 20 mins went by quickly as I expect you did too!. You will really miss your 🌟GP when he retires. Mind you he could do what mine has done, given up his partnership and works at same surgery as their locum doing emergency work!. Could see him anytime now there!.
Good luck for your Rheumy appt. do hope it goes well and you get your long awaited diagnosis. X
My 🌟 GP never sticks to time restrictions. That’s why he always runs late! A 10 minute appointment can turn into 30 minutes! None of his patients complain as he is so thorough. He usually books me in as his last appointment of the day because, as he once said, there is no one waiting after me. The 2nd 🌟 GP in the practice is just as good and also runs late, refusing to rush patients by sticking to time restrictions. I’m sure the receptionists despair at them! Xx
They are amazing gp's GE but could burn out quickly. It's wonderful your 🌟GP gives you the last appt as you would find it harder to see him now he's gone part time. I found this but had to keep booking appts myself!. Fingers tightly crossed ge for your Rheumy appt. xx
Thank you misty. Will try phoning rheumy office tomorrow to check I am seeing the consultant. Want to see a female as I find it hard enough seeing a strange, male doctor, but with some of the symptoms I have been getting I would be much more comfortable with a female. Xx
I changed my practice well over a year around and have yet to meet my named doctor! At the first two or three appointments they were very cautious and thorough. Since then I've picked the one I prefer. He states blankly where there is an AI problem he doesn't not have sufficient knowledge or training for but doesn't leave it there! With the usual 4 week waiting list one sometimes just takes whoever it is!
Sounds like your new GP lupiknits needs a bit of a bedside manner but good he will refer on anything he's not sure about re auto- immune illnesses!. I guess that's all we need in a doctor!. Hope your as well as possible. X
I'd keep quiet about being an "expert patient" if I were you...kinda gets up a doctor's nose when he's studied for years ...if you mean your GP he probably won't have heard of half the experiences you have had! So softly softly.
Keep your expert conversations for your rheumatologist you'll get more info there.
Thank you aged crone for your helpful reply. I do agree that a lot of doctors don't like patients showing too much knowledge and I understand why!. They can hate the Daily Mail and Internet printouts too!. . It's a tricky tightrope to walk which I'm having to do as need health advice at same time as beginning a new GP relationship!. I took heart from our first appt when he said ' you know your body best' The difficulty is that we learn so much when we've been ill a long time like I have and also they have to have general knowledge about a lot of health conditions whereas we can specialise in our own!. It's how much of that knowledge do we impart and how we do it ?. I'm feeling my way thru very aware of these pitfalls which are affecting my consultations with him!. Given time it will get better as we get to know each other.
Agree re Rheumy but difficulty there is getting to see them!. My appt has been delayed by four months and have six week wait now!.
Hi Misty.....just wanted to throw in my 2 pence with AgedCrone . It didn't take me long in the chronic illness game to see that GPs (and many consultants) do not appreciate expert patients. And, also true that your average GP likely hasn't heard about or studied some of the more subtle aspects of SLE. Absolutely agree 100%....you know your body best but have also found a softly, softly "you're the expert, oh esteemed dear doctor" approach often gets the best results! At our practice, we have Patient Access online which allows you to book appointments from home with your preferred GP, thus bypassing the busy practice receptionist. Finally, my lupus clinic at the hospital has specialist lupus nurses you can ring in between appointments with questions/concerns about your condition. These trained lupus nurses often know more than the GPs when it comes to this complicated illness! Hope some of that helps. Stay well and keep fighting! Good luck with your appointments and take care. Tess x.
I'm all for the 'tread carefully at first' approach with a new doctor and will memorise's Coco's (aka healthunlocked.com/user/bar... 🤩) wise words for my next consultation, a second appointment with a kind ENT surgeon.
I have a taken a very different path with my named GP and Rheumy as both still LAUGH at or ignore 😡 my queries (eg Hydroxychloroquine bleaching my hair? 🧝♀️ It's true! And they have both seen it for themselves now!!): I send letters so they can't deny it's something I said, and I take my complete medical records with me so I can show them results/consultants' letters/past problems they can't find/access/understand.
I've introduced my GP to the more subtle aspects of SLE, like the SLEDAI and the BSR's disease activity categories... 😋
I chose to stick with him rather than have to explain the misdiagnoses on my record to another GP (besides the other three will be retiring soon-ish and the new one went on maternity leave within a year of joining 👌). He's no longer patronising after I made a complaint 🤓
May you have a fair wind behind you Misty, and be well mo xxx
Hi eek, thank you for your lovely reply. Gosh you've had an interesting journey to getting the right help and treatment!. I do as you do take hospital letters to my GP in case they can't find them on computer . It saves time in the consultation and does show that we want to help them to help us!. It does go down well if there decent doctors but a lot of the time it's down to their personalities !. I loved coco's wise words too, spoken from a lady with a lot of experience of doctors!.
I do hope eek your finding better treatment , this can take a while and I hope your as well as possible. X
Thanks Misty, I see a ENT consultant soon, after initial referral in 2015 - my GP chose not to respond to his letter about a biopsy - and your post prompted me to think about keeping him 'on side'...so I'm going to start off my consultation with my worry about breathing and inch towards with my fear of oestonecrosis in my jaw, gentle shoving him a sample of the 'catarrh' that is omnipresent somewhere in my nasal cavity with just a hint of a suggestion of suing if I lose teeth (after £4k's orthodontics)!
Now I have to firm up the objectives for the appointment...🤯
1. Referral to vasculitis specialist if possible, as a biopsy could cause my nose to collapse further. If not (there are none with my NHS Board)..
2. Biopsy (I'm ANCA-negative) ...would that advance a vasculitis diagnosis any, hmph 🤷♀️
3. Test my nose gunk for pathogens as I'm on the Aesthetic Pathway for nasal reconstruction. Surgery if there is an infection lurking, EEK!
4. Suggest imaging of my jaw to check for bone damage and/or infection
All of the above with a 'please put my mind at rest - I'm just a worrying old spinster' approach. 😁
Thanks for a great post, it's really helpful in thinking about how to approach a doctor who is an unknown quantity! xxx
PS Keeping posting Harry and friends! They are very rare here!
I'm so pleased this post and the great responses have helped you plan for your ENT consultation . It's doubly hard seeing a Consuktant we don't know, we have to be prepared for anything!. Awful at the delay you've had thanks to your GP. Just hope it hasn't cost you in clinical terms specially as your high risk for osteo necrosis and Vasculitis. I had to have orthodontic work later in life having done it when a kid but it didn't last. Big commitment but worth it in the end!. Lots of luck for it and your consultation. When is your big day?. Mine is Friday with new GP!. Let us know how it goes. You should do well as you've got good points/ questions there. X
Many thanks for your lovely reply which I completely agree with and do do the softly, flatter approach sometimes!. I do agree they don't always like 'expert patients' and it's hard knowing how much to show of this when forging a new relationship!.
I too have the patient access facility where I can book GP appts online!. It's such a help but our practice sometimes puts all the early ones on which are no good for me!. Feel there should be a mix. I too have a Rheumy nurse that's contactable but I don't see them in between my Rheumy appts as too many cooks springs to mind but I would contact them if I really needed help!. There a good way in to your Rhrumy who we get to see so little because there so busy!. Can't see mine till end Oct now!. Do you see the nurses in between?.is it helpful Do hope your feeling better and thanks for your lovely wishes. Will post an update when I see new GP again next week. TAKE CAREX
Thanks, Misty! I haven't seen the rheumy nurse in between consultant visits, but did ring once or twice with questions and she was very helpful. I think they provide a good first line of communication if you're concerned about something the GP can't help with. Looks like you've had lots of brilliant replies and suggestions on here so best of luck with the appointments! Let us know how you go x
Thanks so much Tess. I may have to use the Rheumy nurses more like you do if it's not as good with my new GP!. Thank goodness we have this backup and yes they are a good source of help and will ask the Cobsuktant of necessary!.
I'm so pleased at all the lovely, helpful responses I've had to this question. Hope it helps others too as there are a lot of doctors leaving the NHS so we could face this a lot!.
I put it all into practice next week so will post an update. Hope your feeling better. Take care X
😍 love your hedgie photo, dear misty! And GREAT question + discussion! Not much i can offer up, as we’ve already “shared” lots over the years re my experience of early onset dysautonomia, + more recently re the little bit of experience i’ve got of blood sugar levels issues & addisons, so i have nothing much to add there 😉...But, for what it’s worth, here’s what’s been “working” lately with new medics i’m hoping won’t decide i’m a “difficult” (eg know-it-all aka expert) patient....during our first appts, i look for a good mo to say something like:
I’m no expert, but my chronic systemic illness is early onset and over the decades i’ve done my best to remember what has & hasn’t helped. So now, with the system under more pressure than ever, i’ll do my best to help by offering up any feedback that can help you help me.
The medics usually look kinda 😯 surprised & 😏 relieved when i come out with this...and, so far, it hasn’t “hurt” our collaboration...and, as appts progress, i try to be “gentle but firm” when i “guide” them through helping me with my stuff😉...maybe the sight of my 64 year old grey hair helps 🤷🏼♀️
you’re “early onset” like me...isn’t it depressing that we never really can avoid these prejudice probs with new medics...this includes every new health system person i encounter: nurses, physios etc etc
Hope you'll let us know how you get on with this new GP...every one here is up against this GP-change dilemma...it’s seldom far from my mind, and your thread is helping me lots to feel less anxious about it
Thank you for your wonderful reply and thoughts. I love your intro to new medics!. I'm not surprised they're surprised as they wouldn't hear it said like that very often!. People are much more demanding whereas your saying I'll help you to help me!.
I'm going to see my new GP again on 7/9 so I will put into practice all these wonderful tips and post an update how I get on!. It's great I've sparked such a good discussion on this as it's an aspect that we do have to cope with as an extra . More so now that lots of GP's are quitting the health service or changing their work patterns.
I'm sorry I can't offer any help for that antibiotic you've been prescribed. Can only say that it's a good idea to talk to your GP about it but I'm sure that's what you'll be doing!. Also your SPOT ON to get bowel better before trying it!. TAKE CAREX
You’re V Welcome...and So True: our GP practice has gone through all sorts of disturbing changes since the 1990s...all v unsettling & doing nothing to give complex patients like us the continuity of care that the NHS has recently officially declared is needed by everyone with chronic incurable illness...thank goodness for great support groups like LUK, + for everyone here helping us all on forum 🌟🌟🌟🌟🌟
Thanks too for mentioning my post (here this morning) asking about azithromycin! Lucky for me, posts i placed asking about this on my 2 Primary Immunodeficiency Disease Forums have come up trumps: of the many replies i’ve had so far, only 1 or 2 have had trouble with azithro! But it’s not all that common for PID patients to also have AIDs like ours, so i v much meed the great feedback i’m getting here (it’s well known there are certain classes of antibiotic we should avoid eg sulfa types)
Hello Misty, someone once described it as almost like a feeling of bereavement for someone with our diseases to lose their trusted GP or rheumy. I think we invest so much in the relationship and are so dependent on them it can feel quite upsetting for that relationship to end and to start again?
I’m like you and have still not worked out how to behave as an expert patient! Sometimes I tread so carefully so as not to seem disrespectful (and to protect their egos 🙄), other times I can spend far longer than is sensible for my health gently suggesting things so the clinician can feel like it’s their knowledge and solutions. Then other times I can go in like an absolute bossy know it all! I did this recently with a new immunologist where I was so fed up with lack of basic knowledge amongst a different specialism I went in having read all the current research and clearly sounded (on the surface!) like I knew a lot more than I did. He then treated me as a medical professional and we had a half hour conversation about advanced immunology that was way beyond me with him finishing by saying (kindly yet firmly) that my knowledge and research was academic and that the treatments/ tests the most recent papers were discussing were not available to clinicians. I have realised that although I have a great depth of knowledge about specific parts of the disease, there are large holes in my general medical knowledge and the only way it really works is if we can work with the clinicians as a team with both sides listening. Which largely depends on their personality (and ours!) of course. I think sometimes it can take time to build a trusting mutually respectful relationship but sometimes you just know that will never happen and it’s best to look elsewhere.
Someone wrote recently that sometimes the burden of being an expert patient is too much at our most vulnerable and what would we’d probably all love is just to completely relax and trust the clinicians all have read the up to date research, understand our disease etc and we don’t have to step in with our hard won expertise and feel uncomfortable and that to get the right treatment we need to risk offending people.
Sorry, haven’t really helped there. Just wanted you to know I find it hard to get the balance too! Hope it works out for you with your new GP. We see anyone in my surgery so see different ones depending on your current needs and their character so one for quick med prescriptions with no tedious questions, one when I just need sympathy and to be listened to, one when I want a scientific discussion and another (very volatile yet effective one!) when I know I’m not taking enough steroids and need to be shouted out and lectured on how dangerous it is!
Sweet hedgehog 😍
Hope the blood sugar gets sorted too, as whisperit says definitely worth looking at adrenal function.
Thank you for your thoughtful and really helpful reply!. I agree with all you say specially about it being a bereavement process!. I ve been at the upset stage and angry stage specially as I saw my old GP at the surgery strutting round taking emergency patients as their locum now while I was waiting to see my new GP!. It definitely affected my consultation with new one and I won't let that happen again!.
We have a named GP at our surgery. In some ways it's good you can see the one that's the best for your particular problem at the time but it must be exhausting for you. I do so agree it's down to personality. How long would you give to a new doctor relationship before realising it's not going to work?.
Interesting chat you had with new immunologist. I hope there was still time for the clinical stuff and he can help you!. I bet quietly he admired your knowledge and grasp of a very complex subject. Funnily enough it was my trusted immunologist retiring who gave me first taste of what having to build new relationships is like!. I'd been with him over twenty years!. I changed to Rheumatology then and it took time. I've often joked that I could work for United Nations because of having had to be so diplomatic with the medics!.
I feel much better able to tackle my next GP appt with him next week so thank you melba and will post an update. Need to be tested for AI which I think he's onto. It helps so much learning of others experiences!. I do hope your as well as possible . X
Hello, I’m not sure how long to give it before looking elsewhere because sometimes we (certainly I!) can be fooled by superficial charm and confidence and initially think they’re great until we discover it’s not necessarily based on a solid foundation of knowledge and/or interest in helping. Likewise they might be amazing, kind knowledgeable doctors who don’t have the outwardly confident inter- personal skills to show us this initially and if we rule them out too early then we may miss out on the best dr we’ll ever have once we’ve built a relationship?! Very difficult! The only type I’d rule out quickly are those who don’t listen or believe us.
Hmm well no, sadly the immunologist was telling me it was a immunodeficiency disease in addition to lupus and there is no cure or treatment. He did say the best thing he could do was to write a letter teaching other drs about it and what to watch out for/ treat quickly because it’s so misunderstood so that will be helpful.
Hope your new GP works out - can totally see why you’d feel cross and upset to see him with other patients as a locum when you’ve got to build a new relationship.
Thank you so much melba for your very helpful reply!. I'm so sorry that you've been diagnosed with a primary deficiency illness with no cure or treatment!. That's really tough . Will it make you extra prone to infections?. What symptoms do you get?. There are PID's where this can be helped by immunoglobulin infusions!. I'm glad your immunologist will write an explanatory letter. It's awful when we collect these extra illnesses as lupus complexities are really enough to cope with!.
I do so agree with your thoughts re weighing up doctors characters and what we can and can't live with!. My new GP is very clever and he spends time at our local hospital's pathology lab and does research projects at Liverpool school of tropical medicine. Keeps him interested in other things and gives him a break. He admitted he s working with gp's to keep the number of tests down to a minimum as the more invasive ones can do harm as I know!. I suddenly worried will he know when is appropriate to test and then he's offered a specialist one which he could get funding for to do with Addisons and this low blood sugar I'm getting!. He does converse well , listens and he's a thinker which I am too and my previous GP was. I do think he will be a keeper, he also outlines a plan of action which I like!. We do seem to be on the same page which is vital as they are our gateway to so much aren't they?.
It was my previous GP I saw at my surgery seeing emergency patients. He's changed his working patterns so has become their locum!. It means whenever we go we could see him. So galling when I know over this new problem I've got he would have been easier to talk to about it as he knows me and has been such a support. It's tough timing having something new for new GP when we don't know each other that well!.
It also contributed to my angry state of grief phase( I love likening this to the bereavement process) as this has coincided with a tougher time for me having parents in their eighties with health problems!. Irrationally we feel let down in our hour of need don't we?.
Sorry for long reply but you've really helped me process this melba with your very helpful thoughts. Really appreciate it. Do hope your as well as possible and you have a good weekend. Take careXx
I like the sound of your new GP! I totally understand how you feel especially when you’ve got other stressful things going on in your life with poorly parents. I was devastated when my rheumy left, I trusted her so much and was so shocked to arrive to an appointment I thought was with her and be told then she’d left. I didn’t give the new one a chance at all and decided to follow my old one to her new hospital! It took ages to get the referral through and she laughed when she saw me and said so many of her lupus patients had followed her!! She said she was accepting the milder ones but I needed a bigger teaching hospital so said she’d advise me to stay at her old hospital. She kindly offered to take me if it didn’t work out with my new rheumy but he’s been just as amazing as her but in a very different way - just took a bit of adapting to and now he’s my absolute hero and I’ll be devastated if he leaves!! 🙄😂
Good luck with the medical relationship building, so interesting and helpful you posted this as it’s so useful to see how everyone manages it - and get wise words from people like you and barnclown
Thank you melba for your wonderful , helpful replies and valuable insights. You've added so much to this post and I'm just pleased that raising this issue will help us all!. With so many doctors and other health professionals leaving the NHS we're all going to face this sadly!. What a story about your Rheumy leaving!. She wanted an easy life though just taking the milder cases!. She was good though to say she would have you if it didn't work out but I'm so pleased it has with your new Rheumy and your better off in a bigger hospital for your care. How long have you been ill?. It's funny as I wouldn't feel the same if my Rhsumy left because he's been difficult to get on with!.id be relieved!. I've improved his attitude towards me but just like you it takes time and effort and we don't always feel up for it. to build a relationship!. It should give me confidence I can do it with my new GP!. Talking to you has made me realise this so another thank you!.
An insight I think to help us is the experience my mum has just had at our surgery!. The replacemen t GP for our retiried one isn't starting till OCt so to fill the slots a series of locums are covering. Mum has seen several doctors and the latest one picked up on this and said wouldn't it be a good idea to see one doctor?. She also thought that a list of points mum had made to show her was too much and she thought she was going to be one of those 'patients'. That was enough for mum to quietly explain the situation and how it was affecting her and from then on the GP was fantastic and pulled out all the stops for her!.
It's interesting how gp's and other doctors can be quick to slot you because they don't have time to think individually!. We have to be mindful of so much in these consultations. I don't wonder there so wearing!.
I shall be putting a lot of your lovely suggestions into practice on Friday!. No pressure!. Ha ha and will post an update. I'm just pleased my years of experience can help others. Keep as well as possibleXx
Wonderful replies here Misty!! I think your intuition was right in picking your new GP, he sounds like he will listen and excellent he is already researching the Adrenal test.
I think the approach is softly softly and knowing your lovely nature I believe you will have got the balance just right.
As you know I changed my practice over three years ago and have a perfect Gp, but even with the best they can all have an "off" day when they are tired or just overworked.
I see mine about once a month and she tells me to make a double appointment as often as possible, as she said she wants time for herself to take in all the complexity. I always felt a bit guilty about making a double appointment as me being a bit selfish, but she has always insisted it is so much better for her too.
We have a good relationship and you do sense when is the right time to tell them a bit more. Sometimes I just begin with"I was once told by a past consultant -------- " that way you can say what you want and it doesnt automatically look like internet research! We are all remarkably knowledgeable on here as we gain from everyone elses experiences and Gp's are often so ignorant of Lupus like illnesses but seldom admit it.
I suppose few of them really have time to research it themselves but they should!!!
I think in fact we would all make excellent Gps on here.
Hope it all goes to plan and also that the Rheumy appointment brings progress for you.
Thank you so much for your thoughtful and encouraging reply. I so appreciate it and you've given me the perfect way to ask my new GP about AI without looking as if I've researched it online!. Genius Cutty I can't thank you enough either for all your Addisins help as well!.
I'm thrilled at the great replies I have had to this as more and more this will happen to us as so many gp's are either giving up or changing work patterns that we all will face it sometime!. It's good your new GP is so heloful and sees you so regularly!. Mine wants to do monthly visits while he gets to know me like yours did!. Don't think it's selfish to book 20 mins as it helps them not to be late!. I had 20 mins at my new GP's first appt and even that went by quickly!.
It's all a tricky tightrope to walk getting to know someone new and I know it will take time. It's a hard issue this revealing our knowledge / research or not. I tend to stick to the sites they use. Patient and the NHS one so they can't object!. As you rightly say they should do it and I reckon they must do it to keep up to date.
I'm having my re- run with new GP on 7/9 so I will post an update how I get on. I'm sure thanks to your help it will be much better!. Hope your improving with your injection. Take careX
I've gone through 3 GPs since the suspicion of my MCTD to now due to staff turnover (and being a student they just put you wherever), and it genuinely has been the attitude of the practice which tends to help.
If your GP was kind, listened and you got on really well with him, hopefully the same can be said of the colleagues that he works with. I actually had quite a harsh, uncaring GP before the 3 that have dealt with my MCTD and since she retired, the practice attitude became a lot better in my experience.
Thank you Amy for your lovely reply and thoughts. I'm glad your practice has got better, do you have a named GP now?. Sadly our practice appears to be imploding after a lot of staff changes and extra patients joining. I love your point that if my old GP was nice , he was and listened which is so important , his colleague will be too and I think that's true as it has been a happy place to work . I hadn't thought of that so thank you !. Do you find it hard explaining what MCTD is?. I'm UCTD and it isn't easy is it to a new health professional?.
Glad you like hedgie, that's baby, two adults come as well, sometimes separately and together!. Love watching them. Hope your as well as possible. X
I do finally have a named GP, and he seems to be the most senior one there, which really helps. He seems to really respect what I and what my rheumatologist has to say about things and also even reconsidered his thoughts when I told him about advice a pharmacist told me too, so he's really open minded.
You're welcome for the reassurance.
I'm MCTD rather than UCTD I believe because I have quite persistent Raynauds that I have to control with Nifedipine, and my flare was very characteristic of a lupus flare (rashes, horrible fatigue and muscle weakness and a CPR and ESR through the roof), so I have the overlap of I believe the Scleroderma/Raynauds presentation and the Lupus presentation. It's mixed when you show signs of two or more different diseases, and undifferentiated when it's not really clear what overlap you show, as far as I've read up on it and in papers and such.
EDIT: I misread oopsie! I tend to describe MCTD like that to those who don't know. However, I tend to tell my doctors I'm a dental student so my consultations get a lot of "expert patient" talk!
However, I've read many American papers that mix MCTD and UCTD a lot, so there's a chance that there's very little difference between them all.
I'm doing well, I'm revising for my final exams next week for my degree, so I'm procrastinating a little at the moment haha!
Hi Amy. It sounds like you have a great GP whose very open minded and prepared to listen which is all we need. Added bonus he's the senior partner so very experienced!. Your a clever lass being a dental student, bet you've had some interesting conversations with medics. It can't have been easy juggling your health with studies so well done. I hope your final exams go well . Lots of stress less hopefully soon and I hope you'll treat yourself to something nice!.
According to Triona Holden's book with graham Hughes 'talking about lupus' MCTD can be defined by the presence of a particular antibody in the blood called anti- RNP. I expect you know this and you tested positive as your symptoms sound perfect for MCTD!. Fingers tightly crossed for you next week. Best of luckX
Thank you so much, yeah, it can be interesting talking to medics, a lot of them assume that dentists only ever study teeth so it surprises them when they hear that we study rheumatic diseases at a point!
It's very fun trying to balance health and studies, but it'll be worth it once the degree is in my hand, I hope! Thank you very much! xx
You must have had to learn about a lot of illnesses as they can affect our teeth and mouths Amy. It will be a great achievement you getting your degree!. Let me know how the exams go and very best of luck. X
Hi Misty, sorry to hear about your retiring GP, a good GP is worth so much, I hope that you get a good one in replacement.
Just wanted to say re hypoglycemia, I have had this problem most of my life, long before I ever had symptoms of SLE.
It started around puberty, I used to not get up in time for breakfast before school, them grab a sugary snack mid morning sending my blood sugar sky high, them my body would respond by producing too much insulin and I would faint, (quite spectacularly at times!)
It took several doctors to work out what the problem was because by the time they saw me my blood sugar had self regulated.
As a 19 year old student nurse I gave a star performance one morning fainting during handover at the bedside, (very embarrassing!) this led to an immediate and very thorough examination and lots of loading sagar and exercise tests.
I learned to manage my unstable blood sugar more successfully, and met my husband who soon learned that it was best to offer me a complex carb snack at to very first sign of irritability yawning or 'flakiness' his words.
Then during my first successful pregnancy I developed diabetes which resolved after my daughter was born.
The same happened with my 2nd daughter.
Another slightly confusing factor is that I almost always have sugar present in my urine even when my my blood sugar is low.
As you can imagine I've had more fasting blood sugar tests in my life that hot dinners!
These days I'm much more careful to eat sensibly, and as I am now a retired nurse I don't ever have to go hours between meals.
Nobody has ever been able to tell me if this problem is in anyway connected to SLE and secondary sjogrens, who knows?
Not sure if this is helpful in your situation, but I do hope that you are feeling better soon. 💐
Lovely hearing from you Creaky, thanks so much for replying and it's very helpful hearing your bloid sugar experiences!. Interesting you've had symptoms of it for such a long time before SLE and battled on thru nurse training and having children!. Your such a fighter.
It's funny because over the years I've fainted in different places, specially hospitals and have put it down to my phobia to do with feet rather than blood sugar but now I'm not so sure thanks to you. Isn't it embarrassing when we do?.
I have tweaked my diet and been better but never skipped meals and see my new GP on Friday who did talk about me doing a fasting blood test. I've also got symptoms of adrenal insufficiency and he may want me doing a specialist test for that too!. It's unfortunate needing health advice trying to get to know a new GP and he doesn't know me !. I think it will work out well, but takes time to build a new relationship!.
Thanks so much creaky, hope your as well as possible at the mo. Glad your blood sugar is better now. Have you been on long term steroids for your lupus and Sjogren's ?. Take care X
Yes I've been taking steroids for about 5 years now and on and off before that, just one of those risks I accept, as life is too grim without them. I've tried to come off but it always ends in tears.
Base dose is 7.5mg but I regularly have to pop up to 30mg for a few weeks when my joints get too bad.
I agree seeing any new health professional is a bit daunting, just because nothing is straight forward, I alway fear sounding like a hypochondriac?
My most spectacular faint was into a huge tray of mushrooms in a busy supermarket, I was with my then teenage daughter, it was very embarrassing for her too, we had to get a taxi home, me with bits of mushroom all over me! 😱😱😱😱
Hope it goes well at the GPsMisty, love your hedgehog btw, we have two at the moment, I keep tortoises and they like to drink for the their water bowls, such lovely creatures.
Thanks creaky for your lovely reply. How awful to faint in such a public / difficult place!. Awful for you and your daughter. I hope the supermarket was good with you. I fainted in Sainsbury's once at the checkout and they were marvellous. I felt so embarrassed as you must have too!. 😊 You've really made me think about this!.
Five years on daily steroids isn't as long as me. Hope your bones are kept an eye on!. I've been on them 26 years and once my new GP knew this he said he'd ring the path lab about this specialist test!. He was a bit horrified I think!. I've been just like you, find reducing so hard and have just got to 7.5 mg!. Never managed 5 mg which is what my Consuktants want me down to!. I've done this from 25 mg two years ago so very slowly!. It's hard isn't it?. Are steroids your main treatment like me?.
Thanks for your good wishes for Friday . Will post an update how it goes!. Lovely you have two hedgehogs visiting and they have your tortoises water!. Hope they get on well if they've met!. 😊It's lovely helping the wildlife!.
I saw my new GP yesterday and had a really good consultation!. We talked about low blood sugar and how I've improved symptoms and he said he wants me to do a fasting blood test to check properly if I have diabetes or not . Said it must be before 9 am so cortisol could be included for adrenal insufficiency!. I asked about it and he looked it up and said main test is blood glucose levels. He's pleased at timing of Dexa scan begin Oct and Rheumy appt 23/10 and depending on outcome of bloods thinks it's a good idea to talk to Rheumy about all this. He wants to see me in a month as I've been able to say how things have changed, fatigue and joint pain wise!.
I'm relieved it was much easier to talk to him yesterday and I like the way he comes up with a plan of action!. I think we will do well. Thank you everyone for your great tips , and adrenal insufficiency info. Couldn't have done it without you as it's all helped me greatly. I'll let you know resukts of bloods. Xx
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