Any Type 1 Diabetics out there also TTC....?

[confusedforever]

Hello, I am diabetic this type and am on the first month of TTC. I have good blood sugar control etc but, and this is also apparently due to my age, been told that being diabetic can be a bit of a hindrance. Is there anyone else out there in the same boat? (I know there are lots of type 2's or people with gestational diabetes but not so many type one's) If there is, I'd like to hear how you are all going about things while having a fairly normal / relaxed life at the same time...

Hello, I can reply properly now to all your posts.
My circumstances are that I was told to go and see a diabetic specialist nurse by the (utterly crap) nurse I have my reviews etc with at my GP's surgery. I was told I 'had to have pre natal counselling' before TTCing.
The nurse at the GP's surgery, while very friendly etc etc, only really know's the basic's of diabetes from my experience; we have a bit of a chequered history...
So, we went to the diabetic specialist nurse who was fab (but also wasn't sure why, apparently due to what the GP nurse had written in the referral letter, I was there as I was 'clearly knew what I was doing.') As my blood sugars were all great, I have never had any eye problems and so on I was told I could start TTCing straight away. As it turns out we haven't been able to due to cash and also selling our house (it's sold now, after 12 months, fifth time lucky too) but now we can. The diabetic specialist nurse also referred me to an obstretican (realise that's spelt wrong, computer is slow at the moment otherwise I'd look it up!) She was a 'handsome' and borderline scary woman (in a nice way, think headmistress) who said the same and also went through the more nitty gritty aspects of things like birth (which I am not entirely convinced by - more on that later), possible risks and so on but who also agreed that my control is fine so to get cracking now and we'll take each step as it happens (as, obviously, nobody knows if or how your control may change when you are pregnant until you are actually pregnant.)
Nobody ever asked me to go back for further appointments, and I've never even heard it mentioned. I get the impression it's all okay and just to see my GP when the BFP appears like a 'normal person.'

Ilovekittyelise I agree wholeheartedly that the NHS caters for those who know very little about their condition, and although I shouldn't I do find this irritating at times.

Tonythetiger I am also of the mindset where I want to be the one 'in charge', as it were and hope that any pre natal team would also realise that. I know my body far better than they would after all.

Can I ask those who have had children, what kind of births they had and why? The reason being is that I get the impression it is very over medicalised (well, I think it can be in general.) The obs lady I ssaw, the head-mistressy one, was talking about how they put a gluco drip in one hand and a insulin drip in the other to 'make things easier' (this sounds madness to me, it takes me 4 secs at most to test myself and about 10 secs to have an injection.) She said a 'couple of people' have managed without drips and drunk smoothies instead but personally I'd like to be able to move around freely, surely that's more sensible anyway...?

Ps last Hba1c was 6.4 and I was told that 6.3 was 'the almost impossible to reach, but ultimately perfect reading' and I've never had to go back for any more tests in 12 months.

Hi confused

My understanding was they like you to have ttc counselling as that way they can catch people who do have control problems as the major period it can cause difficulties is the first 12 weeks when all the baby's organs are formed.

For ds I had a 20 min appt with a consultant endo and consultant ob in which they said my control was great and outlined what would be different about my pg e.g. only going to 39 weeks, more monitoring in labour, drip etc. They also said to take 5mg folic acid while trying to conceive and gave me a prescription for it. I asked the ob about foods I could and couldn't eat (there's a long list that pg women get the heebie jeebies about) e.g. diet drinks and diet coke, alcohol in moderate amounts, smoked salmon etc. He said a can of diet coke a day was fine

They told me to call as soon as I got pregnant and they'd book me in.

With the mc I had a pre-conception appointment at UCH but this time I was entirely focused on the ob side as I wanted to avoid another csec. Sadly they only sent me an endo so not much use.

I've never had a diabetic appt with a gp clinic for the simple reason that I believe I know far more than most GPs and all diabetic nurses. It does sound a bit odd that they won't let you go directly with the hospital if you've seen them already as it's just a time saver and ensures you definitely get the hospital you want but I guess everywhere is different.

As to the birth it was very medicalised although I only had drips in one hand. I was induced just before 39 weeks and once my waters broke they put me on a continuous monitor. Some hospitals have remote ones which allow for more movement mine didn't. Pain got too much and I asked for an epidural. After that went in they put a drip in too as it obviously wasn't going to be a quick job. About 14 hours later I failed to get past 8cm and they did an emergency csec. DS born healthy with a little bit of low blood sugar which was corrected with formula in a cup and resolved within 24 hours.

After ds I was obsessed with managing a vbac but then I had a mc and had great trouble conceiving again and it put it all into perspective. All I want at the end of the day is healthy babies with least trauma to me. Also the birth itself is one day and just because that goes well it doesn't mean that things after will automatically follow. I have a friend who has given birth very quickly and naturally both times and neither time has been able to breast feed and feels a failure on that front. Although I had a heavily medicalised birth ending in a csec I did succeed in breast feeding exclusively for 6 months till I went back to work and partly till 11 1/2 months when ds gave it up.

If I did want to redo the first time again these would be the things I'd emphasise and want to ensure that the hospital has as policy:

1. Latest induction date possible. All seem to believe that diabetic babies can't last as long but the later you can put it off the more likely you are to start naturally and therefore avoid some of the risks of induction.

1. Policy on continuous monitoring and availability of remote monitors.

1. Policy on drips and eating during labour. Some hospitals won't let you eat during labour which is why you need the drip. It's very important to keep your blood sugar on an even keel throughout labour as hypos and hypers can cause low blood sugar in the baby which can lead to brain damage if untreated. On the drip point the insulin will work faster in a drip than an injection as it will be going straight into the veins instead of subcutaneously.

1. Statistics of hospital on interventions and emergency csecs

1. If you want use of any special facilities e.g. pools, confirmation that you'll be able to use them even with all the paraphenalia in. Be prepared for things being barred on the grounds you are high risk.

I would also strongly recommend having a doula which I had and even though the birth was medicalised did give me more of a feeling of being in control.

Also find a hospital with a joint diabetic/pregnancy clinic as they are more likely to have the facilities and procedures in place to ensure you are looked after adequately. What part of the country are you in?

Hi Tonythetiger, thank you ever so much for all your info! It helps me hugely to 'speak' to someone who has direct experience. Googling info is helpful to an extent but this is better.

It sounds like your pre TTCing counselling was the same as mine. I wondered, reading the other posts, if going in every few months was the norm but perhaps not.

I will be in Yorkshire, Hebden Bridge, by the time I give birth. (By the way, I am not even pg yet! But we are moving house in about a month, from the south west, so the nearest hospital will be Halifax.)

I didn't realise that low blood sugar in the baby can cause brain damage - is this likely? By this I mean, is it as likely to cause brain damage in teh baby as it is in me? (ie not very likely unless VERY low and VERY fast...?) Sorry if this is talked about in the link you posted on the other thread, I'm going to check that out in a sec.)
I know that a drip is more effective re the insulin side of things, but was / am still not convinced that being strapped to a bed surrounded by monitors would help the whole process. I am wondering if these 'policies' are quite flexible but cater to people who may not be as clued up (sorry if I sound arrogant!) but will be more open minded with things if I am more knowledgable. The obs lady said to me, almost laughing at the potential ludicrousness, that I certainly wouldn't be able to give birth 'either at home or in water.' At this stage I haven't the foggiest what giving birth would actually be like but do quite like the idea of being as unmedicalised as possible. By this I dont' mean whale music and the like, but just simply being able to move around and so on. I also had the thought in the back of my head that my DH could test my blood sugar and so on (would give him a useful task to do!) so I could avoid the drip scenario. I was also told that if the baby was born with low blood sugar they would simply give him or her glucose, from a Hypostop gel if severe or formula if not, which made the talk about 'having' to be near a SCBU a bit heavy handed.

Like yourself, I often seem to know far more about diabetes, especially my own, than the docs / nurses and hate to not feel in control (with the exception of a few, and I mean few.) I have had it over 30 years and have no nasty complications so I do know what I am doing (but sometimes this seems to fall of deaf ears.)

Re Doulas, I am considering this as I have heard nothing but good about them. I think the whole process may be quite scary, and may also panic DH which would make things worse (esp the diabetic side of things) and someone who knows what they are doing sounds an excellent idea. I guess it may come down to cash nearer the time, but I am certainly going to look into it.

Out of interest, have you read this

Right, off to Google your list of things to check. Thanks again! I'll probably be back in an hour with my next questions!

I don't know statistics of brain damage but you have to take into account the fact that babies are much smaller therefore littler amounts can have bigger effects. Saying which I know there is research that hypos cause cumulative brain damage and I've no idea how many I've had (I can count the comas though - 9) but I have a degree from cambridge and do a reasonably academic job so I obviously survived. Who knows maybe I could have been einstein but for diabetes

If formula and hypostop don't work then they need to put a glucose drip into the baby which does require a scbu.

You are certainly right about being able to move assisting labour and unfortunately most hospital protocols for anyone high risk don't encourage this. On the other hand my aunt had 7 children lying flat on her back for all of them because that is what one did in the 50s and 60s so it is possible.

You will need to test your blood sugar very regularly irrespective of having a drip. About once an hour from memory. Also gas and air made me feel like I was having a hypo which meant I didn't get on with it at all.

I did read that article when I was expecting ds but did note that she had already given birth. At the end of the day I wasn't prepared to take the risk of death to me and brain damage or death to the baby for the sake of one day. I'm not trying to scare you but you do have to take all these risks into account if you want to go down the homebirth route.

Saying which I'd definitely fight to keep mobile and unmonitored as long as possible as that will give you the best chance of a non-intervention labour. Also if you are susceptible to it look into hypnotherapy. I do wish I'd done a course for that.

Hi again, the homebirth link was more to illustrate the fact that it can be done without all the equipment rather than saying it was a route I'd like to go down myself. Perhaps under different circumstances I might but rather than the diabetes aspect it's the pain one that freaks me out! That and the noise the whole street would be able to hear (shallow? moi?!)

The mobile and unmonitored as far more important and realistic a target I think. Have been also looking and, and emailed one, doula in the area. Early planning I know but better to know now and be forearmed! Also, you are about the 5th person who has recommened one. I also like the idea of someone who can provide informed support as I am not entirely sure a midwife could or would (I realise this is largely hypothetical at this early stage!)

Lots of hypos' cause brain damage...? Never heard that one! Not that I have ever had a coma, but have had a few nasty one's a few months back when I was going through an incredibly stressful time when I have had no prior warning, have gone physically limp and disjointed - generally I get a lot of warning.

Have been looking for stats on the hospital I would likely to be using with not much success. Is there a special site you can access...?

There is room for negotiation. At my first appt this pg before the twins were found I'd asked if I could go up to 40 weeks (instead of 39) and the response was sure if your control is as good as the last time. I really do want to have a vbac but equally I'm terrified of having bad vbac and an emergency csec for the 2nd or doing something that would affect the babies negatively.

Have you never had a bad night hypo?

I have had bad night hypos recently, and in the past 6 months after never having them before. The reason for this, I believe, was stres. Normally I wake up with a fast heartbeat and realise but when I have been under the recent stress it has gone a bit weird. I have had diabetic nurses etc rabbiting on about being 'afraid of hypos' before that and dismissed it as it was irrelevant but now I get it.

How has things affected you? And congratuations on the twins (eeek!) - sorry I didn't mention it before x

My definition of coma is a hypo that I can't treat myself and have no recollection of about half of even though according to my dh and parents I appeared conscious and would respond and resist in strange ways. Only ones which were actual comas as in dead to the world unwakeable was when I was on human insulin when I was a child.

I like that definition. The stress related ones I have had are similar to that, acting weird but also 'awake.' This is quite a new thing for me, and has made DH a bit paranoid about it (not unreasonably!) Can I ask, how tight were you with your control while you were TTC? I ask as, despite the best of intentions, I am carrying on as normal rather than being super strict. By this, I mean I have had my glucose go up and down as it would normally rather than being super strict and careful. (Please don't think its all over the place, its not at all but neither is it at a steady 5mmol at all times!)

Hi confused you certainly seem very clued up about birth options! I hope it happens more quickly for you than it has for me so far.
As far as control goes, I'm basically carrying on as normal (HBA1c is 6.1 which the hospital says is fine). Personally anything more is where madness lies, especially if it takes months ttc. If/when I do get pg I will go the extra mile then.
You mentioned higher up you went to the GP? I've been going to a "pre-conception" clinic at my hospital, which has replaced my normal clinic appointments (they have lots of different clinics, not just related to conception and pregnancy). This has worked well so far - i go every 3 months for a HBa1c and a bit of a chat. I never go near the GP for anything diabetic to be honest!

I don't think I could achieve a steady 5mmol all the time! I'm more relaxed this time than with first pg but stricter than when not ttc. I low carb so it's mainly a case of watching what I eat and making sure I increase or decrease insulin depending on state of pg.

Hi HedgeSparrow and tonythetiger, I am not that clued up about birth options, but have been reading up (or picking Tonythetigers brains as we are now officially, eek, TTC (still feels weird writing that!)
Glad to hear you are carrying on as normal, Hedgesparrow. I agree that being super strict could drive you mad, it certainly would me but, and normally I am not a worrier, I am a bit concerned that maybe I ought to be being more careful. Generally, if I test and it's a bit high I can simply have some fast acting insulin and it's down to normal within the hour - am now wondering if I ought to be a bit tighter with it...?
I have been to the hospital to see the diabetic specialists last year but am still meant to see the crap GP nurse for 'annual reviews.' I have put off getting myself referred to someone who knows what they are doing as we have had our house on the market with a view to moving (unfortunately this has taken rather longer than we anticipated - 12 months longer!)
The last time I saw the GP nurse she said to me "if you ever find yourself having hypo's with no warning increase your insulin dosage." When I asked her to repeat this, she realised her mistake and said "oops, not increase I meant decrease!" and then laughed. Jesus...
Just this minute finished my lunch and tested and it's 13.2 - this is the kind of reading I am normally not too fussed about as it'll go down soon enough but am now wondering if I ought to have a) less lunch or b) more insulin

have namechanged from tony and back to former life.

This is why I low-carb. Certain foods don't have that effect and it makes it less stressful for me. I'd get yourself referred to a hospital irrelevant of move. There's only so many idiots you can take. Also I don't remember it being difficult to do as I self-referred myself to addenbrookes at the end of university because I didn't like my consultant in London. In the end I decided to stick with him and he did improve but I don't remember it being difficult to get onto a hospital's books.

Hello again. It's so nice to chat about this stuff! Your GP experience sounds woeful (though I am not surprised). I think I have been quite fortunate in the excellent continuity of care I have had at my hospital clinics, and my GP seems happy to defer to them. Luckily their only involvement is signing off my prescriptions (though I did have one incident when they tried to restrict my supply of testing strips as the rules had changed for TYPE 2 diabetics....)

RE sugar readings I have been having the odd high and had what I thought was not a veyr good couple of months, so was stunned when my HBA1C came back at 6.1. I mentioned this at the clinic and the specialist nurse did say hypos would average out higher readings, which wasn't ideal but wasn't too bad as long as I stayed in the 6-7 HBA1c range.

I've never really been encouraged to test AFTER meals, though if/when I do get pg I might have to start. It was always my understanding that it would be OK as long as you were having good readings after a few hours. The trouble for me is that less food = hungry, more insulin = massive hypo at 3pm! I've never really understood how to get great control without lots of hypos so any tips you have there would be greatfully received

I suppose I do worry that I could being doing better but I do think it is partly about striking a balance between doing the best that you can and having a normal and enjoyable everyday life. Having said all this if I finally do get a BFP I'll be straight into panic mode!!

I tend to test if I think I am too high or too low, I rarely do otherwise (unless about to go out for a run or similar.) Therefore, if you look at the readings on my machine it looks like I am all over the place, while my Hba1c says otherwise!

Am not bothering with getting referred to a hospital here as I am hopefully moving in just over a month - its fifth time lucky this time re the sale and it's all going to plan. Agree there are only so many idiots one can take re these things but, at the moment at least, I have no pressing need to see one (although this may change on Saturday when I do my first, eeek, test! - I also realise it is highly unlikely to be a BFP on the first go!)

I have emailed a doula who sounds lovely - not too earth mothery, very switched on - who will cover the area I am moving to. I asked if she had any experience of diabetic births and she doesn't but is asking around other doulas and independent midwives to see who does and will get back to me. Can you tell me what your doula helped with the most? I am very keen on the idea and it seems relatively affordable so worth the money. Also, I am very attracted by the stats on reduced intervnetions such as the hideous forceps. I also think, when or if the time comes I'll be scared stupid and need all the help and reassurance I can get!

Good luck with your house move, confused. That sounds like a nightmare! Whereabouts are you moving to? I am in SE London.

I am moving to Yorkshire, and am currently in Bristol. Where in SE London? I lived in Brixton / Herne Hill for 8 years before moving here.

Hoping to TTC with T1 later this year. I'm 33 and on MDI.

Already have a 4 year old. Had a good pregnancy with HbA1Cs between 5.5-6.5, although it was hard work to achieve that. I had an elcs (my choice as I didn't want to be induced) and a very healthy baby with no blood sugar issues, and I breastfed for a year.

Bit concerned as last time I was pregnant I was doing a very easy job, where not much was expected of me. Now I am a primary school teacher and I know that fortnightly antenatal appointments and daily hypos will not go down well at all. Am fully expecting to be signed off next time tbh .

Meant to add, DC was planned and it took about half an hour to get pregnant . Hoping it will happen quickly again, but I'm five years older and have started having very heavy periods, so who knows?

Hi Strandtest - did you have to be super strict while TTC and when pregnant to achieve that? I think I'd find it very hard to get it around the 5.5 mark without having lots of hypo's all the time.

Great to hear your baby had no blood sugar issues too - it clearly can be done!

I tried to be super strict while TTC and achieved a 7. Your HbA1C comes down when you are pregnant anyway, as your blood volume increases while pregnant, and sort of 'dilutes' the sugar a bit. That's how it was explained to me anyway

I was told off for the 5.5 - my consultant was concerened that I must be having lots of hypos. I was! That's what I meant about the daily hypos. I am fortunate that I have never needed any help to treat a hypo or anything like that though. Several low blood sugars a day are exhausting though, and I am sure I couldn't manage like that in my current job.

It's nice to see other diabetics here, I don't know any in real life!

Ah, that makes a lot more sense! This TTC malarkey has thrown a whole new light on things, things that I haven't had to worry too much about for a long time. My control is, after all, good but it is not textbook perfect, which is what seems to be stressed if you are TTCing. However, I am also trying to keep a semi-open mind about this and not get into too much of a state as surely diabetics with less than perfect HbA1C's get pregnant but are okay....? The idea of living my life like a science project, and a boring one at that, does not appeal in the least!

I seem to know more Type 2's than Type 1's - I can only think of one, and that's a friend of a friend really. It's a pet hate that the press rarely mention there are two types, so people assume I am on insulin as I 'have diabetes really badly, and it can't be controlled with tablets'. I have also asked how fat I must have been Due to this, I am not as open about it as I used to be.

I am the same, rarely ever mention it to anyone. I also get asked if I used to be fat (am very slim)!

And get told I have the 'bad kind'. And that I DON'T have the bad kind, I'm only a little bit diabetic, because people expect me to be fussing about it all the time, and drop to the floor foaming at the mouth a few times a week.

Don't get me started, you be here all night...

Doesn't mention Type 2 till 3rd paragraph This seems to happen a lot, mainly I suppose as Type 2 is so much more prevalent. Grrr!

Did anyone see that programme on C4 called The Hospital? They had one episode on diabetics but did not once mention the two types, but did focus on the poor diets and excess weight of some of the patients. It really wound me up!