To want to see a doctor

[Locc]

I have a fairly new complex medical it started last September. There's been a bit so with my my tests etc and I was discharged from a clinic despite still having this serious problem.

I have asked for a face-to-face meeting appointment with a GP due to the complexity of the issue and have been refused. I have spoken to two peas on the phone phone but they just do not understand the problem as they have no experience with this particular issue.

Am I being unreasonable to push for a face-to-face so I can explain this and make sure they are understanding what I am asking them for help with with?

Because of this and been extremely isolated and other medical problems I've ended up suicidal. At the end of last week I was really poorly with the new problem ( which can be life-threatening) but I feel unable now to ask that help because nobody seems to be listening.

I don't know what to do do.

@Mrspimplepopper

Sorry, I didn't see you have seen endocrinology already

No problem, I didnt see this until after I replied to your initial. Response, sorry.

@Lougle

You can write a letter to your GP and enclose copies of the reports. Then they'll contact you. I've had to do that a few times for complicated things. A 5 minute face to face isn't going to even get you started on your issues.

Thank you, that was going to be the next thing I did but one of my carers rang 111 on Friday when we struggled again to raise my blood sugars. She sent a paramedic who stayed with me until my blood sugar was stable again. My carer helped explain everything that has happened and he was shocked that an endocrinologist discharged me on the basis of the test results and without being given the info about both comatose events. I now have a GP phone appointment later this morning.

Saturday not Friday, sorry.

If you are awaiting to see an endocrinologist, what is it that you are wanting your GP to do?

I find it difficult to know how to respond to this because this shows you have either misunderstood theany times I have already examined this or not ready any of my posts that discuss this aspect.

Also, I've already said I've been to a&e/through to resus twice and a&e after following instructions given for, what to do if I cannot raise my blood sugar to 4mmol/l at home.

I am so weary of almost begging for hell.

I now have a GP phone call appointment later today after yet another lengthy} paramedic visit. He is the 1st one to seem to link all the Information together and understand.

I am so weary of almost begging for hell. what an apt typo!! I meant help, not hell 😁

@Bumblesbumbles

This sounds incredibly hard. You’ve obviously had really frightening things experiences. Covid can make this even more isolating and scary and it sounds like you have a lot of unanswered questions. In terms of physical health your GP should be your advocate here even if It is outside their knowledge area. Sorry if I’ve misunderstood your post but it sounds like you’ve been discharged from endocrinology? I think you need a proper endocrine screen and I hope the GP would push for that.

Understandably this has taken its toll on your mental health and I think you should flag this to the GP or access your local mental health services via 111 option 2. Have you got any support?
Sadly when you’re feeling unwell it’s even harder to push for proper care. I’d personally go for a virtual appt- acknowledge it will likely not be their area of expertise but ask who they feel you need to be referred to next or ask them to get advice from endocrinology or even acute medicine.

I feel for you op- it sounds really hard and the current situation makes it so isolating

Thank you so much. I think you are the first person to actually get what I'm trying to explain and I really appreciate it. It is hard to explain when feeling so exhausted from it all.

When my GP said 'this is outside the scope of my expertise' I asked if he could send me to someone whose expertise it was. He said again that he was f sure what to do. Its so difficult and I can't even talk to my usual GP.

I hadn't thought about contacting Pals, I will call them as soon as they open. Thank you.

It has definitely worsened my ready poor mental health; I told my GP I was struggling with it and all he did was start, a drastic reduction of my antidepressants
, which unhappy with but he doesn't seem to care.

I called the samaritains on the suggestion of MNHQ a d that sort of helped,

I have a phone call appointment with my GP tomorrow due to yet another paramedic visit as my bloid sugar wasn't raising and the glucogel slime didn't work.

Your penultimate paragraph has given me the fekng that it really is OK to push harder for the care I need. Thank you so much.

@Locc

If you are awaiting to see an endocrinologist, what is it that you are wanting your GP to do?

I find it difficult to know how to respond to this because this shows you have either misunderstood theany times I have already examined this or not ready any of my posts that discuss this aspect.

Also, I've already said I've been to a&e/through to resus twice and a&e after following instructions given for, what to do if I cannot raise my blood sugar to 4mmol/l at home.

I am so weary of almost begging for hell.

I now have a GP phone call appointment later today after yet another lengthy} paramedic visit. He is the 1st one to seem to link all the Information together and understand.

So sorry for my subpar help I work in A&E so was genuinely trying to talk through the options available to you.

The option of thinking a face to face appointment with a GP is 'all you need' is misguided.

Anyway, bye now.

I get your frustration but unless you need a physical examination you are putting the doctor at an unnecessary risk .
If they don't understand what you are saying on the phone saying exactly the same face to face will not make them understand anymore.

Locc- it sounds like you have some actions in your mind; PALS, asking for clear clinical plan from GP. I don’t know if you see the same one each time but I’d ask to speak to another one.
The mental health- it’s good you spoke to the Samirtans but I’d also sign up to CBT.

Have you got someone with you at home to support you.
It sounds incredibly stressful for you- having so many things unanswered and, by the sounds of
It, not being properly listened too.

@rwalker

I get your frustration but unless you need a physical examination you are putting the doctor at an unnecessary risk . If they don't understand what you are saying on the phone saying exactly the same face to face will not make them understand anymore.

I left a few days to answer this as I couldn't find the words to explain. This is a complex issue and talking in the phone doesn't offer the same gravitas as speaking directly nor do you get the same flow of conversation.

I finally spoke to my GP on the phone and this resulted in an urgent face to face appointment. During that appointment my GP learned that:-

I had never met or spoken to my endocrinologist

My severe hypoglycemia correlates with my blood pressure going from very high despite being medicated (180/110 average) to new average of 110/55

previous resting sinus tachycardic pulse (125-140) and previous supraventricular tachycardia has reduced to a 56 to 64bpm resting heart rate

that the severe hypoglycemia has caused 1st degree heart block (not an issue in itself, but when coupled with severe hypoglycemic events it is dangerous

that 2 x of the same 2 tests were carried out incorrectly

huge weight gain despite losing my appetite and eating very little (please don't say this is impossible, it can be an indicator of serious metabolic disorders)

And he found a new heart murmur

I have been referred back to endocrinology. I have been booked in for MRI of full abdomen, echocardiogram, ECG, chest xray, blood tests and something else I cannot recall.

I feel upset that it has taken so long for a GP to respect me enough to listen to what I was asking for (and explaining well).

It should not take 5+ hours to reverse hypoglycaemia. It is a dangerous condition and the treatment I have had has not reflected this.

Sincere thanks to those of you who have shown compassion and understanding, I really appreciate it.

Well done for pushing it Locc. It’s not easy when you’re ill and understandably worried. It takes a lot to fight to be heard in these circumstances.
I’ve been thinking of you and wondering how it went. I hope things start to move forward now so that you can get a proper diagnosis and the care you need.

If you are awaiting to see an endocrinologist, what is it that you are wanting your GP to do?
.
I find it difficult to know how to respond to this because this shows you have either misunderstood theany times I have already examined this or not ready any of my posts that discuss this aspect.

Also, I've already said I've been to a&e/through to resus twice and a&e after following instructions given for, what to do if I cannot raise my blood sugar to 4mmol/l at home.

I now have a GP phone call appointment later today after yet another lengthy paramedic visit. He is the 1st one to seem to link all the Information together and understand

So sorry for my subpar help hmm I work in A&E so was genuinely trying to talk through the options available to you.

The option of thinking a face to face appointment with a GP is 'all you need' is misguided.

Anyway, bye now

I was very frustrated because I had ready explained about the numerous visits to A&E and had already explained that I had been discharged from endocrinology despite never seeing or speaking to the consultant. My blood glucose was so low I was comatose, on 2 occasions, blood pressure was unrecordable (low), peri-arrest, had bradycardia, etc. I would hope an A&E nurse would realise that a patient, GCS 3 plus all the above would warrant attention to find out what was causing repeated hypoglycaemic crisis.

It is a truly scary situation to be in and, apart from the 2 comatose episodes, the treatment received has been diabolical. I was just asking for help, not to be called misguided. Eventually I was told.i had been correct in pushing for this face to face GP appointment. It should not take this amount of effort or begging to get a potentially life-ending condition adequately investigated should it? I'm sure that had it been your mother or child you would have encouraged them to push for help as I can't really believe you would tell your own relative they were misguided. 😔😔 Feeling very sad

Can you afford to see a consultant privately?

@Locc

If you are awaiting to see an endocrinologist, what is it that you are wanting your GP to do? . I find it difficult to know how to respond to this because this shows you have either misunderstood theany times I have already examined this or not ready any of my posts that discuss this aspect.

Also, I've already said I've been to a&e/through to resus twice and a&e after following instructions given for, what to do if I cannot raise my blood sugar to 4mmol/l at home.

I now have a GP phone call appointment later today after yet another lengthy paramedic visit. He is the 1st one to seem to link all the Information together and understand

So sorry for my subpar help hmm I work in A&E so was genuinely trying to talk through the options available to you.

The option of thinking a face to face appointment with a GP is 'all you need' is misguided.

Anyway, bye now

I was very frustrated because I had ready explained about the numerous visits to A&E and had already explained that I had been discharged from endocrinology despite never seeing or speaking to the consultant. My blood glucose was so low I was comatose, on 2 occasions, blood pressure was unrecordable (low), peri-arrest, had bradycardia, etc. I would hope an A&E nurse would realise that a patient, GCS 3 plus all the above would warrant attention to find out what was causing repeated hypoglycaemic crisis.

It is a truly scary situation to be in and, apart from the 2 comatose episodes, the treatment received has been diabolical. I was just asking for help, not to be called misguided. Eventually I was told.i had been correct in pushing for this face to face GP appointment. It should not take this amount of effort or begging to get a potentially life-ending condition adequately investigated should it? I'm sure that had it been your mother or child you would have encouraged them to push for help as I can't really believe you would tell your own relative they were misguided. 😔😔 Feeling very sad

I think you're misguided to push for GP face to face because it's far too urgent and you need go to A&E and push for inpatient specialist review. Or go via pals and ask for urgent specialist review/re-review. As per my original post. Anything your GP can do will realistically take far too long.

Hi OP. Does anything precipitate these attacks - fasting even for a short period perhaps?

My son has a condition called Ketotic Hypoglycaemia (aka Accelerated Starvation). He’s better than he was now but wakes daily with sugars around 3, and can be lower, especially if vomiting or otherwise unwell.

KH is supposed to only affect children but I know adults with it, and also there are metabolic conditions which have similar effects but are more unusual (glycogen storage disorder for example). When he was born he had Hyperinsulinism which is basically the opposite of T1 diabetes, and very rare and usually diagnosed very early on in babies because it’s so serious - not sure if it could develop in adulthood. But my point is there are other conditions that can cause this and which GPs and even a lot of endocrinologists may have limited experience of.

I would contact your GP and ask to be referred to a larger hospital (your nearest university hospital) to their endocrine team and when you see them ask them about referral to Metabolics.

You might also want to join the Ketotic Hypoglycaemia International group on Facebook - there are definitely adults with similar issues in there and they might have some ideas for pursuing it further.

I think you're misguided to push for GP face to face because it's far too urgent and you need go to A&E and push for inpatient specialist review. Or go via pals and ask for urgent specialist review/re-review. As per my original post. Anything your GP can do will realistically take far too long.

I had already been via A&E and been an impatient for 2 weeks (where all the relevant tests were done wrong!) . Pals told me to see my GP. He wouldn't see me - from September until monday this week.

In normal times this may have been a bit easier to navigate but it felt that everywhere I went I was getting the excuse we can't because of covid.

I had a phone call this morning offering me an appointment on Tuesday March 9th at 9 a.m. to see the same consultant who didn't bother speaking to me previously. Patients SHOULD NOT have to go through all this to get an appointment to see the relevant specialist. Particularly a specialist that I'd already been referred to and discharged from without speaking to or seeing!

If there has been serious detrimental effects to my health because of this wholly unnecessary delay I won't think twice about complaining.

@SinkGirl

Hi OP. Does anything precipitate these attacks - fasting even for a short period perhaps?

My son has a condition called Ketotic Hypoglycaemia (aka Accelerated Starvation). He’s better than he was now but wakes daily with sugars around 3, and can be lower, especially if vomiting or otherwise unwell.

KH is supposed to only affect children but I know adults with it, and also there are metabolic conditions which have similar effects but are more unusual (glycogen storage disorder for example). When he was born he had Hyperinsulinism which is basically the opposite of T1 diabetes, and very rare and usually diagnosed very early on in babies because it’s so serious - not sure if it could develop in adulthood. But my point is there are other conditions that can cause this and which GPs and even a lot of endocrinologists may have limited experience of.

I would contact your GP and ask to be referred to a larger hospital (your nearest university hospital) to their endocrine team and when you see them ask them about referral to Metabolics.

You might also want to join the Ketotic Hypoglycaemia International group on Facebook - there are definitely adults with similar issues in there and they might have some ideas for pursuing it further.

Hi thank you for your message. I am not on Facebook but it sounds worth joining so I can so I can access the group you've mentioned . I haven't heard of this condition before or so I'll also be checking that out thank you

I've not been able to find anything I do, but I or don't do,, that precipitates these attacks and no way of stopping them happening. I eat every 2 hours; I'm finding this struggle because I've totally lost my appetite so even eating half a size of wholemeal bread isn't as easy as it should be.

sometimes I get very shaky and incredibly sweaty so it is literally dripping off my back, arms and legs and feel very sick. However the two really severe crises when I became comatosed have I had no knowledge that anything was about to happen, I've just collapsed with no symptoms.

I am so relieved something is finally being done and that my GP finally listen to me me. Again, thank you so much to those that have offered me support advice and understanding it is really helped

@Lightsabre

Can you afford to see a consultant privately?

Sadly, no. I'm not even in a position to put the heating or hot water on, but at least my winter coat and have plenty of use this year as I wear the inside and outside. I'm not bothered though no I'm used to it.

I did a nice name change fail too... Ah, never mind!

I presume they've excluded Addison's? Some aspects of your collapses sound similar to an adrenal crisis.

I've not been able to find anything I do, but I or don't do,, that precipitates these attacks and no way of stopping them happening. I eat every 2 hours; I'm finding this struggle because I've totally lost my appetite so even eating half a size of wholemeal bread isn't as easy as it should be.

It’s really tough eating when you’re not hungry - we really struggle as DT2 needs to eat but if he doesn’t want to it’s a real challenge as he’s also autistic and doesn’t understand why it’s so important. Unfortunately loss of appetite is a symptom of sugars dropping so it can be a vicious cycle.

Obviously I wouldn’t want to suggest anything that might help since who knows what’s causing your issues, but for us eating slow release carbs with protein is the best way to maintain sugars. We also give cornflour at night (mixed in with milk) and we also have specialist glucose polymer powders to make up solutions when sugars are low (SOS is what we use now but there are others that do the same). The adult versions and management are listed here bimdg.org.uk/tempdoc/27022021_083812_BIMDG_ADULT-OralERGeneral_2017_holding_898483_05042017.pdf

Hopefully they’ve prescribed something for hypos at home?

@SinkGirl

I've not been able to find anything I do, but I or don't do,, that precipitates these attacks and no way of stopping them happening. I eat every 2 hours; I'm finding this struggle because I've totally lost my appetite so even eating half a size of wholemeal bread isn't as easy as it should be.

It’s really tough eating when you’re not hungry - we really struggle as DT2 needs to eat but if he doesn’t want to it’s a real challenge as he’s also autistic and doesn’t understand why it’s so important. Unfortunately loss of appetite is a symptom of sugars dropping so it can be a vicious cycle.

Obviously I wouldn’t want to suggest anything that might help since who knows what’s causing your issues, but for us eating slow release carbs with protein is the best way to maintain sugars. We also give cornflour at night (mixed in with milk) and we also have specialist glucose polymer powders to make up solutions when sugars are low (SOS is what we use now but there are others that do the same). The adult versions and management are listed here bimdg.org.uk/tempdoc/27022021_083812_BIMDG_ADULT-OralERGeneral_2017_holding_898483_05042017.pdf

Hopefully they’ve prescribed something for hypos at home?

Thank you for such a long in depth response, I really appreciate it.

It must be so difficult to help a child with this type of problem, I feel for you.

The only prescription items I have are glucagon gel, sharps, lancets and the stunning yellow sharps bins!

I have made a note of the glucose polymer powder because it can take house tk raise my blood sugar from 2.5 to 3,let alone a decent levsl.

I hope your little one manages to cope with this at such a young age.

Just a quick point as it might be important if you have another emergency!

There are two things they might have given you - glucogel (or a similar product) which is a gel in a tube, or glucagon injections. They may have used glucagon injections in hospital but they are different things - only pointing it out in case you for example told a paramedic you’ve had glucagon when you’ve actually had glucogel, as this may impact how they treat you.

Glucagon injections tend to work for hypoglycaemia but when they don’t
I believe it indicates a glycogen storage or other metabolic issue - so that’s one way medics might be able to figure out what’s going on.

Either way, you need to see someone more knowledgeable about causes of non-diabetic hypoglycaemia, adrenal issues, possibly metabolic disorders. When DT2 was born with hyperinsulinism the NICU quickly picked up the problem but had to liaise with an endocrinologist at another hospital because they’d only had one other baby with it and even the paediatric endocrinologists at the hospital didn’t know how best to treat him.

Unfortunately it’s very unlikely the GP will have a clue unless they’ve had similar patients in the past - endocrine and metabolic disorders are so complex. Keep pushing, and I hope you get some answers before you have another severe episode.

@SinkGirl

Just a quick point as it might be important if you have another emergency!

There are two things they might have given you - glucogel (or a similar product) which is a gel in a tube, or glucagon injections. They may have used glucagon injections in hospital but they are different things - only pointing it out in case you for example told a paramedic you’ve had glucagon when you’ve actually had glucogel, as this may impact how they treat you.

Glucagon injections tend to work for hypoglycaemia but when they don’t
I believe it indicates a glycogen storage or other metabolic issue - so that’s one way medics might be able to figure out what’s going on.

Either way, you need to see someone more knowledgeable about causes of non-diabetic hypoglycaemia, adrenal issues, possibly metabolic disorders. When DT2 was born with hyperinsulinism the NICU quickly picked up the problem but had to liaise with an endocrinologist at another hospital because they’d only had one other baby with it and even the paediatric endocrinologists at the hospital didn’t know how best to treat him.

Unfortunately it’s very unlikely the GP will have a clue unless they’ve had similar patients in the past - endocrine and metabolic disorders are so complex. Keep pushing, and I hope you get some answers before you have another severe episode.

Thank you for explaining this to me as I had been confused why 2 x tubes of glucogel hadn't helped when glucogon jab given by the paramedics raised my numbers a bit. I've no idea if u have mistakenly said the wrong word but I have a big note on my inside door telling paramedics where all my treatments and kit are, so they will have seen what has been used. It is important to know these things so I feel odd that no one had told me this.

No advice as such, but if your GP doesn’t know he/she needs to bloody well find out! In my job which is far less important, I don’t just get to shrug and sit there doing sweet fanny adams when I don’t know the answer to something. You get a referral to a specialist via a GP don’t you?! or am I missing something. I’m surprised the hospital didn’t refer you on though. When I went to A&E the hospital referred me to a specialist.
I’m sorry you are sick and I hope you get the help you need.

I’m surprised one of the MN doctors haven’t been on to comment.