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Help! Type 1/Lada or Type 2

This sounds similar to me, especially the "treatment works for a while" line. I tried 6 different pills in multiple combos, each one worked for a month or two before numbers crept up. After banging on about getting tested for this and that I got a type 1 diagnosis a couple of years after the original type 2. I can't comment on how to do it but what I did was request insulin. The actual diagnosis is not really that important, getting the right trestment is. If you can get what is basically a standard type 1 treatment then he can get controlled and the stress of the diagnosis and wrong treatments will be lifted. Then you can get the diagnosis in your own time.
 
Hi Sanober,
Many thanks for taking the time to respond to our 5 year history! It is reassuring to hear that I am not seemingly making a fuss about nothing and we will push for c-peptide testing to confirm or refute type 1.5. We are waiting to receive a copy of the letter from the hospital just to double check their response. During a phonecall my other half was told that there were no plans to carry out further testing at the moment and to keep to his current treatment plan. My frustration is being compounded by the fact that not only is the GP completley lacking any knowledge, but the hospital don't seem at the top of their game either; depending on who we manage to speak to!

As he has pernicious anaemia; again an autoimmune condition, it makes a type 1.5 diagnosis more probable. Why can't medical professionals see past the type 2 'diagnosis' - it is now just a case of 'persuading' the 'professionals' that the c-peptide test is justified!
 
Many thanks droberts for responding.

I have had the hunch that he is LADA for nearly 4 years and have done loads of research which only goes towards confirming this is a likely diagnosis; its just a case of getting those who have the facilities to perform the test to take my thought processes on board and act upon them. As an allied health professional myself, I obviously have an amount of medical knowledge myself - God help, if I didn't - what hope can you have without that sort of background?

I am just becoming so frustrated with the whole process and the exasperation that my husband is clearly experiencing; let alone the symptoms. I could understand their hesitance of performing these tests if he was overweight and had obvious type 2 markers, but he doesn't! They have based their diagnosis on the most likely outcome and his age; nothing more! Just as well I am determined and won't be fobbed off
 
Hi SlummyMummy, it is disgraceful the time you have had to wait for diagnosis ( and still not have one)
How frustrating for you both. I myself have gone through a strange journey with Diabetes (Type?).But my journey so far has only lasted about 8 months but has been a nightmare.My first call from the doctor was to say, good news I dont think you are diabetic, the second (only the next day!) was to say, sorry but I think you have Type 2 Diabetes :shock: This was from a fasting blood test as I had symptoms and had been checked by my sister in law Type 1, with her meter who said I should go to the doc.A bit of history, I am 37, very slim, always run several miles most day (as well as lots of other exercise)since the age of 15, always eaten healthily and never been overweight.I had been feeling very ill for a whle before the visit to the docs,with strange symptoms where my legs would just buckle under me and would nearly pass out and would feel starving and crave sugar.Since I had my meter I gladly found out I was having several Hypos a day, as low as 2.2mmol (no wonder I had felt ill).But also found that within half an hour of eating my bs was flying up to 12 - 17 mmol and I can actually feel it rising its so strange, like your downing a vodka lol.Fast forward a bit, went fot GTT, but fasting too high to have it, referred to Specialist with Type 2,who then tells me they think I am either LADA or MODY and may need Insulin in a few years :shock: Nearly fell out the chair.She sad I am a very complicated case as I shoot too much insulin at the wrong time and not enough at the right time (Maybe I am Type Z lol) Also my HBA1C is 5.7% normal (but if I am having so many lows too it would balance out wouldnt it) My fasting are usually too high, and my post meal spikes are silly too.I have had Insulin levels and C Peptide done (straightaway, didnt have to wait around as you did so I am lucky there) both inconclusive, now I have to do an 18 hour fast and another 12 hour fast for insulin measurements and the Specialist said he will refer me in 3 weeks for Genetic Testing,so I am not sure if that is for LADA or MODY, its all so confusing. I have been reading a lot about LADA , it seems most LADAs are very active, perhaps we have all pushed our bodies (and panreas,s!)too hard who knows.After all these years I am beginning to think exercise maybe is not too good for us after all, I have had an abnormal echocardiogram, got to see Heart Specialist next week, maybe problems related diabetes who know we will see.I so hope your partner is given a diagnosis very soon, keep NAGGING, it only took one vist for me to be referred, so I am lucky, chin up you wll get there xx
 
Hi daisy3174, thank you for taking the trouble to read and respond. I am starting to find it rather alarming that seemingly so many people are finding themselves in similar positions to ourselves; albeit not as lengthy. You certainly sound like you have gone through the mill :-(

I think my husbands problem stems from the fact that his blood sugars were intially controlled to normal, non-diabetic ranges with low GI, that unfortunately he was discharged somewhat prematurely by the hospital and referred back to the GP. It has been the GP practice that have failed to respond effectively and not monitor his condition as per the guidelines/protocols that has meant this has been a somewhat convoluted experience.

The assumption has just been made that blood sugars are not being tightly/effectively controlled and that my husband must be responsible for that and as such they have not been able to see past the Type 2 diagnosis; in their eyes, he is a 'diabetic' rather than a person with diabetes. Everytime he has been to the GP and has been unwell; everything has been attributed to his poor control and not questioning what the root caause is of the elevated blood sugars. This has caused feelings of guilt to manifest as he then blames himself; it is a cyclical process that is exacerbated by health 'professionals' who cannot see the bigger picture and think outside of the box. He has been incredibly unwell with the pernicious anaemia but this was initially ignored as many of the symptoms could be attributed to high blood sugars.......this means that they have not dug deeper and looked for other causes; they have made just assumed the diabetes is responsible.

Unfortunately, we have not seen the referrals that the GP practice have made to the specialist - perhaps they have not been provided with the whole picture. However, we are in the process of requesting his medical records!!

When he has been to see the 'specialists' at the hospital it has been registrars he has seen; I think quite clearly we need to see the consultant! Unfortunately, I have not been to see the specialist with my husband (due to my work commitments and his independent nature!) but shall be ensuring that I accompany him on his next appointment as I will have no hesitation in questioning and challenging their treatment plan and diagnostics to date.

You made a very interesting point about being active.....my husband has always been incredibly active; running 3-4 miles 3 or 4 times a week and on the other nights of the week has been at the gym.

Good luck with the heart specialist next week.
 
hi Slummymummy.... sorry to hear things have been so frustrating. I believe LADA takes an average of 4 years or so to fully develop and that could be why is it misdiagnosed by so many health professionals. But from my experience with diabetes it pays to be assertive and keep at the medical team about what isn't working. I was on oral meds for years and they were clearly not working, not was diet or exercise. I struggled to get any BGL under 7... and my HbA1c was always 8+... it went as high as 9.2% at one point. Finally they listened to me and gave me another GAD and C-peptide test. The GAD didn't show any antibodies, although the C-peptide showed that my pancreas was producing very little insulin. So from that day on (Feb 2010) I was put on insulin and told that I would need to stay on insulin to manage my diabetes. It took a little bit to get my head around that... but then I've had a lot better control of my BGLs overall since being placed on insulin. I hope the docs can get it right for your partner... it's not fun when things don't work. Health is important. I know the frustration... just keep fighting.
 
This happened to me but at last had to pay for blood test as I was allegedly type 2 but started after 12 weeks with bad chesty cough GP at the time refused to see me then I had three weeks typical type 1symptoms byb but did not do anything as thought I could not be diabetic as have allergy to most sugars and glucose since 11 years of age the most awful thrush which I had never had took me to the practice nurse who noticed I had lost weight etc... Even they were surprised when just treated with diet.back to paying for the blood test the consulted who treated me on NHS said test waste of time defiantly type 2 I then said have got Autoimmune disease so paid for test which revealed no antibodies and results completely off the scale he even said he reviewed me I paid and I phoned to get result he did not even phone to let me know it was expensive at last being treated properly but it suddenly goes out of control very quickly but read this happens with LADA but classed as type 1 on insulin but knowvhow your hubby feels when in double figures even low ones feel ghastly
Last night I dropped to 1.8 felt awful and live on my own
 
Hey all!

Thanks for this thread Slummymummy! I know it is frustrating and depressing, but every time we have a thread on LADA, we find more and more members who were originally misdiagnosed Type 2s with a horror story to tell about their battle to get a proper diagnosis and treatment.

Paul - it is terribly depressing to try your best and to see your efforts amount to nothing. Keep your chin up, it gets better once you get an accurate diagnosis and appropriate treatment.

Christine - I understand completely how you felt. I was at my wits end by the time I was properly diagnosed and treated.

Daisy - it sounds like LADA to me! The genetic tests are probably for MODY though - MODY is genetic, LADA is not. What type of diet do you have? With LADA, reducing carb to a minimum helps a lot. As the first phase insulin is missing (see my earlier explanation), any carb (and almost any protein) will make your BG rise dramatically. If it was carb you eat, your BG can then crash quickly. Hope you get sorted quickly.

Hi Sanober! Hope you're well and getting a bit of control now! My BG is back to dropping a bit low again for the last couple of days, having been a bit high for the last couple of weeks. Can't keep up with it :roll:

Everyone else, I hope you get the treatment you need! Keep spreading the word about LADA and we'll eventually get the medical world to diagnose and treat us properly!

All the best

Smidge
 
Hi All and thanks so much for taking the time to read and respond. Smidge......I am actually finding this rather alarming that so many people seem to be/have been in the same position as we are.

When my husbands GP hadn't even heard about LADA and had to ask me what is was and then had to ask us what a GAD antibody test was for, I was totally stunned! As an allied health professional, I have to demonstrate evidence of continuing professional development in order to maintain my professional registration. It seems that GP's are a law unto themselves. Equally frustrating is the lack of knowledge of Doctors working in endocrinology who don't seem to have adequate supervision of the treatment they are prescribing to the patients that they see. Whilst I appreciate the consultant can't see all patients, I am rather alarmed that regsitrars etc just seem to be able to crack on with 'treating' type 2 patients with anomalies and no one seems to check up on what is happening. Why is this such a little known about condition? Why is it seemingly up to the patient to get the correct diagnosis?
 

Yes, I often wonder the same.... it's the same here. I'm also under investigation for a stomach/oesophagus problem and the last specialist was at a public hospital and completely useless. At the end of the day I'm still left with symptoms unexplained and I know they didn't exhaust their tests either... my GP was very dissappointed with them also. When it comes to diabetes, I had to insist with my endo myself that I needed to be tested as I highlighted there is proof that oral meds are just not working. Only when I insisted did they agree to do GAD and C-peptide tests. It turns out I had a good point as I needed insulin... if I didn't insist, they still probably would've been throwing drugs down my throat. :lol:
 
Hi mep73,
Sorry to hear you are experiencing difficulties with diagnosis for your stomach/oesophagus problems - at least your GP sounds as though they are sympathetic and may be persuaded to seek an opnion elsewhere??

Our latest **** up was instead of sending us a copy of the latest recommendations and results in a letter to the GP with the GAD info, they sent us another copy of a letter following an appointment in January......it seems that nothing can be straightforward.

I am finding I am becoming so frustrated and feel that a letter of complaint may be the next course of action. Otherwise we are just left hanging until his next appointment in July. What I don't want is to have to wait until July before they agree to test for c-peptide and then have to wait again; while he continues to have high blood sugars and generally feeling the effects of this.
 
Hi Slummymummy,

I have read some of the replies to your initial query.

when I reached the post where you said his GP said it wasn't T1 because of his age I felt I had to respond.

I was diagnosed with DKA Diabetic ketoacidosis by my GP at the age of 63. I had been feeling awful for weeks. Thirst was horrendous as was urine output. I could barely climb six stairs without becoming totally exhausted.

I visited the GP with a urine sample which he dipped with a diagnostic stick and found a high level of Keytones. Admission to hospital followed with stabilisation of BG levels and a spectrum of Blood Tests including GAD and C-Peptide. Some of the results were not produced until six weeks after discharge from hospital. At the first Diabetic Clinic appointment the consultant confirmed that I did indeed have Type 1 Diabetes

Before discharge from hospital I was taught how to test my BG and inject insulin. To this day I see the consultant every six months and have the full range of support associated with T1s.

I sincerely hope you manage to get the health issues sorted and the appropriate remedies administered.
 

hi Slummymummy
I wouldn't want to be waiting that long either.... they should have him being treated by an endocrinologist by now and the tests should be done together. They can do both at once... well here I know they can.
As for me... I'm now waiting for 3rd opinion and seeing another gastroenterologist. I have to wait until mid June to see him and apparently that is good as usually he has waiting list of 5 months or so... I've been told he is a professor and one of the best in this city. So fingers crossed that this time I will have a specialist that is willing to work things out with me. I know for sure I'm sick and tired of it all. It affects my diabetes too and pretty much my whole life. :roll:
 
Hi Ambersilva,
Many thanks for your response and for taking the time to read 'our journey' to date.

I am fully appreciative of how type 2 diagnosis is seemingly based on age at time of presentation of symptoms and know that this is often incorrectly assumed - you are another example of my reasoning to push forward with getting full testing done on my husband.

It really is frightening that rather than listening to a patient; medical professionals continue to assume a type 2 diagnosis until a crisis point is reached; resulting in emergency treatment and hospital admission. This is exactly what we are trying to avoid! I don't want us to reach a crisis......I would like testing and diagnosis to be carried out in a controlled manner am I expecting too much? Are my expectations unreasonable?
 
Hi mep73,
He is being seen by endocrinology - but hasn't been seen by a consultant. He was seen at the end of January and saw a registrar who assumed the B12 deficiency was due to metformin and suggested coming off it for 6 months and see what happened. This was obviously reviewed by someone more senior and we then received the phonecall saying that they didn't feel the B12 was related to metformin so to continue taking it and requesting he was tested for coeliac and GAD antibodies.

During this phonecall, it was not thought to check whether my husband was actually eating foods which contain gluten (which he avoids to try and reduce his elevated blood sugars) and as such the test results cannot be considered accurate - one problem we face is that it takes around 6 weeks for the hospital to actually provide a written response and we are receiving conflicting advice from the hospital. We are currently waiting for a written response following positive GAD antibody testing. Verbally, we have been told they will not be testing for c-peptide at this point in time and wish to continue with the same treatment plan - which is not providing control! :-(
 
What about my suggestion a few days ago to see an endo privately? Are you allowed to do that or would the Armed forces prevent that too? If not, go for it.

Ali
 

arggghh! hopeless aren't they.... this is your public health system? I just had that experience too with gastroenterology at a public hospital here... not a good experience at all. I was seeing some junior doc who knows 2 lines really well... "I don't know" and "we can't help you". I'm going back to private again now. Seeing a private endo may be more helpful for you.
 
Arrrggghhh just found out the endo I was going to see doesn't do private consults, despite his stand in secretary telling me he does so I have to find another now and hope my GP will redirect the referral.

Does anybody get anything right?

Ali
 
Hi mep73, yes unfortunately this is the NHS - seemingly just as worrying as the GP :-( depending on who you get to see! I have tried persuading other half to consider a private appointment. We don't have private medical insurance so would have to fund this ourselves - this is not something he will consider atm. Am I feeling exasperated or am I feeling exasperated??? Haha, yes I think it must be a junior doctor 'stock answer'!
 
Hi Ali,
We can empathise with the 'does anybody get anything right?' It is sooooooo frustrating that no-one seems to give accurate information. Good luck with a new private referral; can the GP not suggest someone; rather than you having to 'find' another?

Ali H said:
Arrrggghhh just found out the endo I was going to see doesn't do private consults, despite his stand in secretary telling me he does so I have to find another now and hope my GP will redirect the referral.

Does anybody get anything right?

Ali
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