I was diagnosed 4 years ago with Lada Diabetes, for the first 2 years i attended the type 1 hospital, they then sent me to my local type 2 clinic. I started to develop diabetic complication nerve damage in my feet, however, the clinic was not concerned, over a period of time my doctor admitted she could not treat me, and was going to refer me back to the the type 1 hospital, to which they refused to see me, my doctor was banging her head in despair, then in December i started to get sore Kidneys, urine tests taken to which there was a lot lot of blood and protein, the type 2 nurse me i need to see a doctor and get referred to a type 1 hospital and since the nearest one refused to see me, she said ask to get referred to a different one, before i left i asked to see what actual diagnose they had me down for my diabetes, she showed me her computer screen and it said Lada Diabetes Type 1. she made me an appointment to see a doctor for me to ask to get referred. I saw a different doctor she asked about hypos etc, however i told her i also feel unwell when suger levels are rising, the doctor told me i was talking **** and that she deal with a lot of diabetics and none of them experience feeling the suger levels rising, i said maybe because you deal with type 2 diabectics, she then said you are a type told i told her i was not and have a look at my recorded diagnose, which she did then told me she was changing that to which she did, and also deleted the Gada results to prove my diagnose.. I have been to the hospital for kidneys since, to which they have told me the blood in my urine is caused by a diabetic leak, and there is nothing they can do, so i have to now go back to doctors and ask what the next step is, however, i have been fighting with them over the last 2 years for them to do something as i have nerve damage in my legs as well which affects my walking, so i know they will not be interested in the diabetic leak, however the hospital, told me if my sugar levels do not get controlled it will cause kidney failure eventually. I am so sick of the lack of treatment and my own doctors words were they d not recognize Lada, and that they only treat either type 1 or 2. Anybody got any idea what i can do, firstly in respect of the Doctor that changed and deleted my diagnose and Gada results, secondly how do i approach the doctors in regards to the diabetic leak .
Doctor changed my records
- Thread starter sharron 64
- Start Date
Freema
Expert
- Messages
- 7,346
- Type of diabetes
- Type 2
- Treatment type
- Diet only
oh so much you have to fight against. concerning your legs .and nerve problems . the main thing to do is keep your blood glucose under 7.5 and stable all the time. do you eat a high carb style or are you eating lower carb. are you injecting insuline .?
there is no real effective cure toward neuropathy except from keeping blood glucose from spiking real high and maybe get some gabapentin medication from your GP and maybe also try 600 mg daily of the R-Alpha-lipoic-acid
here is a cheap place to buy it over the web :
https://www.apo-rot.co.uk/details/f.../10732448.html?_nav=suche&_searchkeyword=frey
doctor are really the only ones that can give diagnosis so you have to rely on them no matter what, but maybe some people in here can recomend you a doctor that do take tha LADA diagnosis seriouslyæ
there is no real effective cure toward neuropathy except from keeping blood glucose from spiking real high and maybe get some gabapentin medication from your GP and maybe also try 600 mg daily of the R-Alpha-lipoic-acid
here is a cheap place to buy it over the web :
https://www.apo-rot.co.uk/details/f.../10732448.html?_nav=suche&_searchkeyword=frey
doctor are really the only ones that can give diagnosis so you have to rely on them no matter what, but maybe some people in here can recomend you a doctor that do take tha LADA diagnosis seriouslyæ
I get no treatment at all, sugar levels never below 11 and thats before i eat.. I can not take Gabopentin, and as for other meds i can not take because i have a Garts Esophagus disease.. My point is i get no treatment, as the docs say until i become type1 they will treat me as a type 2, however they tell me no point in giving type 2 drugs as because i am not type 2 they will not work, so can you see my problem. Do i wait till my kidneys actually fail before i am taken seriously.
Hi Sharron 64 only thing I can suggest is can you change your doctor maybe a new one might be more sympathetic? Only a suggestion good luck and a big hug
Hi @sharron 64, Where are you? Are you in England? (Sorry if this is a daft question) x
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Hi I live in Fife Scotland. If i change my doctors do i request the gad tests be re done to prove i was diagnosed as Lada Diabetes Type1, otherwise the new doctor will not be any the wiser.Definitely change your GP. Good luck. Hugs sent.
Fruitella
Well-Known Member
- Messages
- 304
- Type of diabetes
- Type 2
- Treatment type
- Insulin
Hopefully the hospital that did the original tests will still have the results in their system somewhere. Can you contact the hospital and ask for copies of any blood results over 'x' number of years? These tests always have a paper trail too, maybe a copy of the results sent to your gp. Good luck.
As I understand it the rules for the NHS in Scotland are slightly different from in England, so you may prefer to check this information. In England GPs are contracted by NHS England where you can lodge a complaint, or you can complain to the Practice Manager (usually a business manager and non-clinical) or senior partner (usually one of the GP’s). If the issue is with secondary care (someone your GP referred you to; usually in a hospital) you can try the Patient Advice and Liaison team (PALs), they can escalate to the hospital Complaints department if necessary. In England you can only have your complaint investigated by 1 NHS organisation, so you will need to choose who is better placed to follow your complaint through.
If you check your CCG’s (not certain for Scotland) website you might find they have an advocacy service, they are usually independent, and might be able to advise you where to try next to progress your complaint, if not then maybe citizens advice (or similar)
In addition to this your local MP can advise you and ask questions on your behalf if progress is slow.
Decide what you need, maybe make a list of all your questions. Keep a record of all correspondence and telephone calls, including dates and names of who you spoke to, be clear and firm. Tell them what you have told us; that you absolutely must not be left to wait for your kidneys to fail before anyone takes any notice.
I hope this helps, good luck x
Johnjoe13
Well-Known Member
- Messages
- 398
- Type of diabetes
- Type 2
- Treatment type
- Tablets (oral)
I could be wrong but isn't it illegal for a doctor to remove something from your medical record? I'd certainly check this out. Also I'd consider making a complaint to your local CCG about both the hospital and your GP, Not a fan of CCG's but that mob does hold all the strings where your local NHS is concerned. But in the meantime change your GP and tell them why. If you need any help then contact Citizens Advice who should point you in the right direction.
Either way I do feel that the Hospital you were referred to and specifically the endo services have a responsibility to make sure you receive the proper care for whatever condition you end up being diagnosed with, I don't think they should just discharge you with such a vague diagnosis. I'm type 2 and the local hospital endocrinologist saw me last week with my GP and a clinic he attends at GP surgeries and he asked how I was doing and how he likes to see what treatment T2 are receiving and its effectiveness.
Start making some noise because it's your body and ultimately your life your are dealing with here in the end
Either way I do feel that the Hospital you were referred to and specifically the endo services have a responsibility to make sure you receive the proper care for whatever condition you end up being diagnosed with, I don't think they should just discharge you with such a vague diagnosis. I'm type 2 and the local hospital endocrinologist saw me last week with my GP and a clinic he attends at GP surgeries and he asked how I was doing and how he likes to see what treatment T2 are receiving and its effectiveness.
Start making some noise because it's your body and ultimately your life your are dealing with here in the end
As you have found it's a mess out there with regard to Late onset T1 and many GPs don't recognise T1 when an adult - mine didn't. I think you have a case against the NHS for deleting valid results and I would insist on them being repeated. Bear in mind that GAD results become more unreliable as time elapses after diagnosis. You can have GAD and c-peptide tests done privately as I did. Note that c-peptide can be more useful then GAD. There are causes of T1 such as viruses other than antibodies but a low c-peptide will 'always' show a lack of insulin and hence T1 (unless you are an overweight T2 who has long-term damage)
I have Graves disease, which is an auto immune disease this is what has caused my diabetes. I am a size 8 so not over weight, and the reason as well as my Graves why i was sent for a gad test. Every time i am referred to a hospital for one reason or another, the diagnosed problem always relates to my diabetes, however the doctors just shrug their shoulders. I just don t know where to turn, i was told by the hospital yesterday that my diabetes really needs controlled otherwise i will have kidney failure, and the doctors are the only people that can help me, but if they shrug their shoulders as they have done, then i am heading for kidney failure and i am petrified
The surgeon at the hospital is writing a letter to my doctor, requesting that my diabetes needs to be controlled, because of the kidney condition, and also asking my doctor to refer me again to a specialist.. So i need to wait until my doctor gets this letter, and hopefully they will act on his request, however i am not too hopeful.
- Messages
- 11,342
- Type of diabetes
- I reversed my Type 2
- Treatment type
- Diet only
Sharron - I'm really pleased your surgeon is being directive with your GP. Fingers crossed for you.
Hi again. Are you on any diabetes medication? You should be on Basal/Bolus insulin unless there is a good reason otherwise. Your GP can prescribe this as mine did or in fact she referred me to the surgery DN who sorted out my insulin prescription. If you aren't on insulin, then insist that the GP starts it or complain to the Practice manager. if you are on insulin, is it well-balanced? if not what problems do you have with it? It seems that there is too much discussion about whether you are T1 or T2. I'm T1 (LADA) by my own definition but listed as a T2 but that doesn't matter as I'm now on Basal/Bolus. The GP needs to focus on the best treatment. It sounds like your surgery is not one of the best?
Yesterday i saw a specialist, only after threaten to go to my M P. I am on Metformin and froxiga. The specialist, agreed i was type 1.5, and not type 2 so i should not have been given Type 2 drugs, i taken along my monitor as requested, as my monitor does not agree with the HBA1C test, which is perfect at 48, however my monitor gives me reading ranging from 13 to 19.5, so hence them scratching their heads. I have been told i will go on to insulin next Tuesday, but in the mean time i have to use a new monitor, eat 3 times a day, and if my reading are the same as using the older monitor, which is only 6 months old, then they need to investigate why there is such a big diffrence between the HBA1C and my daily tests. so far my new monitor is giving me the same results
Alison Campbell
Well-Known Member
- Messages
- 1,443
- Type of diabetes
- Type 2
- Treatment type
- Tablets (oral)
Make sure you get a copy of the appointment outcome for you own records. So pleased that you have got some progress at last.
