So upset

[Weehotty]

Background: tablets not working but insulin does ( previous gestational) doctors not listening to the impact on me and originally refused to acknowledge my sugar issue until my old consultant stepped in and wrote then a letter. There happy to let me a 39 yr old yummy mummy struggle on .

So after 3 days on steroids by blood sugars were hitting 20 today ( yes that is correct) and that was me on very very little carbs.. cue the upset stomach banging head and mega thirst .. So about 11 this evening managed to collect a urine sample and low and behold ++ ketones .. phoned the nhs 24 for advice .. who proceeded to send me to a and e.. ... I thought maybe they will take me seriously and sort out my medication ..... no .. as my ketones we’re reducing they were happy to send me home .. the doc did not like my high sugars and said and i quote .. id give u a drip and insulin that would really bring those numbers down , but there’s no point as they will be just as high in the morning ... as i sat in tears he said take it up with ur gp and the diabetic team ... I really feel so unsupported with this crippling condition . Im left with just burying my head in the sand and just to kid on that im not diabetic

 

[VashtiB]

I note that you have posted in the type 2 section of the forum. Are you sure you are a type 2?

In any case I am so sorry that you have received so little support so wonder you are so upset. You did absolutely the right thing seeking medical assistance- I am sorry that you weren't given more help.

I really think you may have to consult another doctor and see if they can do the necessary tests to confirm that you are type 2. If you are then let us know and maybe post some details about what you are eating and people can share some suggestions.

Be assured there are many people here willing to help.

 

[Weehotty]

Hi - due to me being a previous gestational they have classed me as type 2 ... although my dad is a type 1 his pancreas packed in when he turned 40

 

[Marie 2]

You need those tests for being a type 1. You are more likely to be a type 1 if it runs in your family, especially if it's a parent.
30% of type 1's are misdiagnosed as a type 2 at first. I'm assuming because of the gestational diabetes, which used to only be the sign of future type 2 that they are assuming it's type 2, but I remember running across something once that talked about it can be a future sign of type 1 too.

Steroids are horrible for either type of diabetes, you need to be really careful as they can really play havoc with your levels. I realize sometimes they are a necessity, but you really have to watch taking them.

I was misdiagnosed at first too and the medications didn't work on me either, luckily I was put on insulin. It wasn't until I switched doctors that she sent me to a new endo that ran the tests without me even asking and I got diagnosed right.

I thought the hospital would be better, maybe switch doctors? Another idea is can you call the NHS 111 again and tell them they just sent you home and that you are getting nowhere? Or will it work to go back to the a & e with high sugars again and say you need a referral to a diabetic team? Unfortunately I am in the US and I don't know how the NHS system works. Hopefully someone comes along that does.

 

[EllieM]

You need those tests for being a type 1. You are more likely to be a type 1 if it runs in your family, especially if it's a parent.

Agreed, My kids re in their twenties now but back in the day when I attended a diabetic antenatal clinic, the GD women were told they'd probably end up with T1 after the third pregnancy.... In any case, I''m pretty sure that T1 ex GDers have posted on here.

@Weehotty
Ask for the c-peptide and GAD tests. If the c-peptide is low then they'll have to give you insulin, whether you're T1 or T2. In the meantime, keep the ketostix handy and call A&E when they go high.

Lots of virtual hugs.

 

[Goonergal]

Steroids are notorious for increasing blood sugars. Paging @xfieldok a type 2 with experience of that.

 

[Juicyj]

@Weehotty I was also gestational with my daughter which went for a few years and came back as type 1 about 9 years ago and been on insulin since, yes you need more support and no it’s not unusual to be diagnosed type 1, but the sooner you get your GP to run some tests the better, your health is important and so is getting the right medication to treat those high levels, good luck and let us know how you get on.

 

[DCUKMod]

@Weehotty - If you are not happy with your GP's approach, or reaction, please see someone different.

For a second opinion, you can be specific about whom you would like that from. I can't say if you can specify and Consultant for a second opinion for GP advice. The time I had to use that (at the suggestion of my GP) was when I was unhappy about a Consultant's assessment of my then condition, which went along the lines of, "I doubt we'll ever get to the bottom of your very atypical symptoms and presentation".

It took time, but we got there. The delays were,'t pleasant, but probably have fewer nasty implication in the shorter time than you could be facing.

Is there another GP at your surgery you could see, in the first instance? Sometimes just a fresh set of eyes can make all the difference.

Please do keep an eye on those ketones when your bloods are high. If in doubt, NHS 111 or directly to A&E.

Always better safe than sorry.

 

[Weehotty]

Fraid not it took two years of me pushing back on them to the point i managed to get a locum to get a letter out to my old consultant . Hey even when the consultant specified a ogtt they mucked it up on the locozade measurement because of the sugar reduction. I stood there arguing with the doc , my phone in my hand showing them that the sugar content was reduced .. which was daft because they had put up posters around The surgery Telling diabetics to double the content of lucozade in an event of a hypo ... just feel like im fly in the ointment to them

 

[DCUKMod]

Fraid not it took two years of me pushing back on them to the point i managed to get a locum to get a letter out to my old consultant . Hey even when the consultant specified a ogtt they mucked it up on the locozade measurement because of the sugar reduction. I stood there arguing with the doc , my phone in my hand showing them that the sugar content was reduced .. which was daft because they had put up posters around The surgery Telling diabetics to double the content of lucozade in an event of a hypo ... just feel like im fly in the ointment to them

The thing is, you have to continue to be so. It's not your fault your body can't follow their plan.

Have you tried radical thing like having a few days with no carbs at all - just having meat, cheese or eggs?

Some T1s find, after a while, they have to bolus for protein, but I would probably be surprised if that came into play initially. I'm not T1, and everyone reacts differently, of course, but it would be demonstrable that you're not eating more carbs than you believe. I reckon most of us have that that nasty little discovery once or twice!

 

[DCUKMod]

Not “after a while”. If we (all of us, not just people with type 1), eat no carbs, our body will break down the protein into carbs. This happens pretty quickly - within hours, not days. This is why people with type 1, will bolus for protein when they eat little or no carbs. They may bolus a little later than for carbs but only by an hour or so. If they don’t, their blood sugars will noticeably rise.

Of course, I have no experience of this, but I don't think it happens to everyone immediately, but of course, for each and every person, testing, recording and reviewing will provide valuable pieces of the jigsaw.

 

[Jam&Scones]

I sympathise with your frustration - you have every right to be concerned. Have you seen a diabetologist? As a weird diabetic, it was the DN that initially put me in contact with the specialist team (I don't think they usually do this btw, but she new the specialists and they were based in the same centre), but I have found the doctors there very good. Far superior to a GP anyday (god bless my DN, she is good).

 

[Weehotty]

, sorry to be a pain but i dont understand what u mean by bolus ..

My fasting bs today was 12.2 i had a boiled egg and one slice of toast .. (16.4 Mmols)( bread 13 grms carbs)

had a chicken salad for lunch (15.3mmol)

dinner i had a vegetable stir fry With 22 gms carbs noodles .. broccoli carrots green beans onions mushrooms ( 16 mmols)

banging my wee head of a wall here - and im starving too boot .... no snacking cause im terrified to eat

i hate to say it but my lip balm tastes sooo good

 

[HSSS]

You mentioned tablets not working, which ones? You also say Insulin works - now or when you had GD?

Well I can only speak for myself as a type 2 but the toast and the noodles would raise my levels significantly and I’d be hungry too as there no fats in this menu. However they wouldn’t be as consistently high as yours either though. Though that could definitely be affected by the steroids.

I’d agree with the others and ask for all the antibody tests and c peptide as you’re struggling with a lowish carb diet and have a family history of type 1. Can you self refer to the local diabetes clinic at the hospital? Especially as you’ve had contact with them in the past. Could be worth a call to ask.

Edit From an old post I see you had an antibody test privately, what did that show?

 

[Weehotty]

Islet antibody was negative .. getting a Cpeptide done now .. tablets are metformin . And the insulin worked when i was gd

 

[HSSS]

Islet antibody was negative .. getting a Cpeptide done now .. tablets are metformin . And the insulin worked when i was gd

Hope the c peptide clarifies things. Let us know how it goes.

Gd and type 2 are not the same. They each respond differently and have different options open to them. And obviously type 1 is different again.

For type 2 diet is the biggest factor so long as you are producing insulin (which c pepetide should clarify). There are other medications than these two, lots of them, if diet isn’t the answer for you.

 

[Marie 2]

Hopefully c-peptide will tell you more. Low or low normal is a sign of type 1, high or high normal is a sign of type 2.

Some type 1’s don’t have the antibodies but don’t make insulin and they don’t know why. Plus there is more than one antibody test but a lot of the time they just do the gad test because that is the most common. There are odds and ends of less common diabetes types too. Having too high ketones is usually a sign of a lack of insulin production.

So I hope the c-peptide helps answer what is going on.

 

[Daibell]

Hi and welcome. Bolus is the mealtime insulin and Basal is the 24 hour insulin. The normal T1 insulin regime is called Basal/Bolus or MDI (Multiple Daily Injections). You sound like a T1 but being on steroids will confuse things. It's good to have the C-Peptide test as well as GAD as other things such as viruses can cause beta cell death and not just antibodies. Just keep eating fats and proteins until your diagnosis and meds are sorted.

 

[xfieldok]

Sorry I'm late to the party I have been in bed the last 3 days.

Which steroids are you on and what's the dosage?

 

[Weehotty]

Off steriods for two days now ... currently sitting at 21.6 . Should the steriods be setting now ?