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Help with LADA/NHS

Discussion in 'Type 1.5/LADA Diabetes' started by HigherStrength, Oct 9, 2021.

  1. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    Thank you for your reply. Yes, I have been to Private endo who has written to my GP with treatment suggestion. However, GP says he must refer me to NHS endo to get go ahead or not. Now I just wait.

    No steroids . I dislike meds. The only time I have taken any pharmaceuticals in past 15 years is a couple of paracetamol for toothache and the Glicliczide for a month recently. I only eat real food, 99% carnivore. No fluoride in my toothpaste kinda guy!

    I take a number of supplements and herbs such as Vits, C, D3, NAC, Glutamine, Creatine Monohydrate, Cinnamon, Quercetin, Mutltivit, Magnesium, Zinc, Ashwaganda, Siberian Ginseng to name a few....but nothing one cannot get from health shops.

    PS - I have considered TRT so got my levels checked. I am mid range so didn't pursue further.
     
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    #41 HigherStrength, Oct 10, 2021 at 8:57 PM
    Last edited: Oct 10, 2021
  2. searley

    searley Type 1 · Moderator
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    Some won't... mine didn't.. mine won't even change my insulin unless the request come from my consultant
     
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  3. searley

    searley Type 1 · Moderator
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    I battled for about 10 years to get the correct diagnosis

    In the short term I would say take oral meds and request a specialist appointment

    When you get to see the specialist they will request new hba1c and if its still high will see the orals are not working so be more willing to go the insulin route especially if they request cpep tests etc aswell

    In the short term you are unlikely to suffer keytones as you are producing insulin so are getting energy from your food the biggest risk is neuropathy from continued high bg's although your average bg is no where near as high as I was getting .

    So I think play the game for now.. and keep pushing for a consultant appointment..

    Hint.... if you have another cpep test at any point make sure you fast
     
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  4. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    These are my recent tests. My Private endo has emailed me;

    "I am concerned that you are not able to access insulin, especially as your glucose leves are high and increasing".

    Will call GP and try and get urgent appointment.
     

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  5. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    Update:

    Called GP today and asked for urgent phone appointment with a different Dr and I got one.
    She was far more helpful and offered to chase the Secondary care team, as she says Primary cannot initiate insulin, and liaise with my Private Endo...wait for it....to see if there is an "alternative treatment". I gather the Tresiba I have asked for get their pants in a twist. :)
     
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  6. Fenn

    Fenn Type 1.5 · Well-Known Member

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    So you are trying to get a specific insulin? Why?
     
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  7. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    One of top diabetes specialists suggested it based on below;

    Long acting properties - I still have some insulin production and studies plus his experience showing significant reduction of having hypos with Insulin Degludec vs Insulin Glargine. Makes sense to me. If he suggested anything else, I would have gone with that. However, I do research and read studies to see what I am potentially getting involved with before agreeing to anything. Plus, I do not see the point of taking inferior biosimilars or substitutions if they are available. After all, I do pay via taxation for these things. We all do. Think I will ask for Ivermectin too while I'm at it. :)
     
  8. Fenn

    Fenn Type 1.5 · Well-Known Member

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    Lol inferior biosimilars? Is talking like that supposed to make me feel stupid, you clever or both? I find it very hard to believe it has a use but then I never finished secondary school so what would I know, best of luck, I’m out.
     
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  9. EllieM

    EllieM Type 1 · Moderator
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    I think it may be a mistake to set your heart on one particular initial insulin. The drug companies seem to churn out new brands every couple of years (a cynic might wonder if that's partly to do with copyright issues) and though some varieties have different time profiles to others, at the end of the day it's all insulin. If you end up being T1 then eventually you'll need insulin or die, and the brand that suits you best will probably depend on how you react to insulin, which you don't really know yet. And a lot of people work through several insulin types before they find one that they like the best.

    In your position, I'd concentrate on getting the NHS to identify your diabetes type first.

    Do you also have a preference as to bolus (short acting) insulin?

    Anyway, I hope you get a referral soon.
     
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  10. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    I'm not trying to "make you" anything man. I left school at 15 and didn't take GCSE's. I teach myself now. All it takes is a type of some text into a search engine and some reading from reliable, independent sources. That's how I make my decisions.

    In addition, if I wasn't diagnosed with "T2 -now not" in 2016, it would not have forced me to research any of this or to try and get my body in a decent state to try and deal with this. I could of course have just listened to the doc, taken pills and gone downhill like the majority. However I took it as an opportunity to go full in and try and fix my body, get strong and beat it. If it was T2, it would surely have been put to bed by now. Even the pharmacist said "are you sure" when I tell them GP says T2. :)
     
    #50 HigherStrength, Oct 16, 2021 at 10:17 PM
    Last edited: Oct 16, 2021
  11. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    My "heart" is not in anything. All I want to do is what is most appropriate and suitable treatment. Tresiba has been suggested by the Specialist based on its' profile - trial a month and report back. If anything needs adjusting, we take it from there.

    I do not have a preference to any short acting insulin, This could be the next step and I will go back the specialist when the time arises, which is likely in the near future. Because my GP is confused and lame and the referral is morbidly slow, originally, I wanted to seek out Dr David Unwin, but he has stopped practicing. A colleague from the Public Health Collaboration (https://phcuk.org) suggested Dr Cavan. https://www.drdavidcavan.com/about-me. So I did as I did not want to wait an eternity to get a firm diagnosis.

    To be perfectly frank, diabetes or not, I have found the NHS (bar A&E) to be woefully incompetent, lazy, ill educated, corrupt and pretty much give out advice that is detrimental to human health. Sad thing is, we pay for these failures and have to fight to get what we pay for and self-educate to make sure what we are fighting for is right! If my GP had his way, I would be on Gliclizide and Metformin and a T2D. Doesn't take a genius to figure out why.

    This is one study that helped me come to an informed decision and agreement with the specialist.

    "Conclusions: Compared with glargine, degludec is associated with equivalent HbA1c control and significantly lower nocturnal hypoglycemia rates. In T1DMB/B and T2DMinsulin-naïve, degludec is also associated with significantly greater reductions in FPG and lower total doses of insulin versus glargine."

    https://pubmed.ncbi.nlm.nih.gov/25081590/

    It also seems strange that in Bulgaria, they have figured out how to keep Tresiba costs lower than the other. Maybe it's because the NHS (we) are getting ripped off - as usual? We do live in Clown World.

    https://pubmed.ncbi.nlm.nih.gov/31796048/
     
    #51 HigherStrength, Oct 16, 2021 at 10:32 PM
    Last edited: Oct 16, 2021
  12. searley

    searley Type 1 · Moderator
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    I was on tresiba for somewhere in the region of 8 years... it has a much flatter profile an initially I liked it...BUT.... its a lot less flexible... you CAN NOT goto bed and think 'I've got a busy day tomorrow so I will have less insulin tonight' as any changes you make take upto 72 hours to take effect so I had hypo issues during the day on busy days

    As for night time hypos with lantus and levemir many get around this by taking in the morning or splitting the dose

    I think your first battle is to get on insulin... doesn't matter which... because in getting on insulin you will be under the care of a team that deals with it... if you then find what you are on doesn't suite you are under the care of the right people to change it.... which you may have to anyway... I personally can not tolerate Novorapid or fiasp for more than a few days

    But tresiba very is certainly better for some than it is for other... erratic life its no good
     
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  13. dcle2021

    dcle2021 Type 2 · Active Member

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    Interesting thread. Same diagnosis condition as you, but not known if I am T2 LADA or whatever. Have blood tests booked at hospital for that now.

    First day on gliclazide 40mg. Seeing 3mmol/l deterioration in my levels! Ok I've not been very good today, but monitoring...
     
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  14. Weehotty

    Weehotty · Well-Known Member

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    oh that’s interesting !!! my peptide was 4.3 with glucose level 10.3

    did u get your glucose checked too ?
     
  15. Weehotty

    Weehotty · Well-Known Member

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    can i also add i was given 80g gliccy twice a day my sugars have jumped into the 20s after eating and i woke this morning to BS of 15.9 … doc says ive to double the gliccy … i think not .. i asked for victoza and my doc says no ..

    im scunnered just like you …
     
  16. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    I read that
    Hi, It seems the NHS prefer to push sulfonyureas. I have read studies that these can force faster pancreas deterioration. What is your carb consumption? If diet and lifestyle changes have been made and you are low carb/high fat or keto and blood glucose is increasing, then you may be in a similar position to me, so worth delving deeper and getting insulin. GADA and C Peptide tests.

    My HBA1C has been consistently within range for 5 years... around 41-43. Recently jumped to 65 which triggered my return to the Doc.
     
  17. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    If you have made all the necessary lifestyle changes and BG has been increasing, could be in a similar position to me.
     
  18. HigherStrength

    HigherStrength Type 1.5 · BANNED

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    Update. Finally have an NHS endo appointment booked for mid Nov,
     
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  19. Weehotty

    Weehotty · Well-Known Member

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  20. Weehotty

    Weehotty · Well-Known Member

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    i got a hba1c 7th sept was 63 .. just got a new one one on wednesday its now 73 . im. now on 320 of gliccy and this morning’s breakfast of a ham sandwich ( whole grain bread as suggested by dietitian) sugar levels were 20.3

    i did speak to the nurse about my carb issues .. apparently she says i still need to eat them - and recognises that im very sensitive to carbs ..so she has stipulated a change of meds is on the cards
     
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