Diabetic & an HG sufferer

[tori]

Hi all, can anyone help me????????????
I am a 27 year old diabetic, I have had diabetes for 15 years and am normally well controlled. December 2005 I fell preganant with our first baby. By week 5 I was being very sick and each time I went to the DR. she said it was morning sickness. I was in and out of hospital being rehydrated for 3 1/2 months. I tried EVERY kind of drug but nothing really seemed to work, or if it did, it didn't for long. I lost a lot of weight and my diabetes went out of control. By about 15 weeks I couldn't take it any longer and my partner and I decided to take the drastic step and have a termination. This broke our hearts.
We really want to have children, but are really scared. My diabetes is back under control and I am back to my normal health. My diabetic consultant has put me on a higher dose of folic acid and has said that this might help a further pregnancy. Nobody in the medical proffession in the UK seems to know anything about HG and I am teaching myself from all available sources!!! Can anyone give me any advise??? Or any DR to see??

Help please!!!!

[Natalie]

Hi Tori,

Just to say I've seen your post and will respond later this evening.

Natalie, x

[tori]

Thanks, look forward to hearing from you.

[Natalie]

Hi Tori,

Sorry I didn't get back to you. Dh had the computer all night which is why I am writing at this time . I will try to wrestle it off him tomorrow lol Just to put you out of your misery - we have a few Diabetic HGers on this forum so you're not alone. I'm sure they'll have some helpful stuff to say and also info. on tackling HG on the NHS!

Will write more tomorrow. I need to go to bed now!!!

Natalie, x

[mandy]

Tori,

Message from Natalie; unfortunately her baby has been admitted to hospital. In the midst of this she hasn't forgotton you, and will reply to you when things settle down.

I will pm you too, in case you don't find this post.

All the best, Mandy x

[sarahkate]

Hi Tori,

I'm sorry it's taken me so long to reply to you. It must have been horrible to deal with the combination of managing diabetes and HG and I am so so sorry that it was so bad you had to terminate. There are other women who have made that decision here and many if not all of us felt those feelings.

I am fairly certain that there are a couple of type 1 diabetics on the forum. I will PM them for you if that is ok? There are several people who had gestational diabetes that I know of. It can be done - a successful HG pregnancy with diabetes. I don't know whereabouts you live in Kent or how big your local hospital is but in my experience HG is much better managed in a bigger hospital, preferably a teaching hospital. For you that may mean being cared for at one of the London hospitals. The downside is the travelling while you feel ill, etc. The reason I have noticed this is better is that they just have more patients so they will see HG a bit more often. The second reason for you is that there is usually a endocrine/ obstetrics clinic with an obstetrician with a special interest in diabetes, a diabetologist, and several specialist midwives. If I were you I would ask for a preconceptual referral to such a clinic - because there are a fair few diabetes type issues with pregnancy even in the very well controlled like yourself. If your GP won't refer you because of the HG then just say it's because of the diabetes. At that visit you can outline your history and your concerns and have a plan for how your control will be managed whilst you are pregnant. I imagine if you are sick again, you will end up in hospital again, from a diabetes point of view even if not from a hydration one.

There are plenty of drugs you can take with varying effect. If you are under a consultant clinic you are more likely to get them. Some ladies here swear by vitamin B6 (try a health food shop) preconceptually, and early treatment is key.

I really hope that if you decide to try again you will get better medical support, and of course, we will be here for you too. Let me know if there's anything I haven't answered.

Sarah xx

[tori]

Hi Sarah,
thanks for replying, it is a great comfort to know that there are other people out there that have gone through the same things as I have. It would be great to hear from other diabetics so please do PM them. I am now on vitamin B6 at 10mg a day. I have heard that a higher dose is good, do you know about doses???.
When I was suffering last year I was in Ashford hospital. I'm not sure if this is a teaching hospital but I will try and find out. Their maternity ward is not that big though and when I was in the midwives didn't seem to know much about my condition at all. They even gave me the wrong insulin on 2 occassions which made me quite ill also.
When I go to the Dr's what exactly should I ask for referral wise??? I am already looked after by a diabetic consultant for my diabetes. When i went to the Dr's last week for another reason, I asked her if she knew of any specialists in HG and she said no. She advised me to wait until I was pregnant and if I was really ill again she would refer me to the consultant who looked after pregnant diabetics at the local hospital. (Last time, this consultant was soooo busy it took her 3 days to sign my termination form, and for the 4 months that I was pregnant I didn't see her once!!!!). I'm not sure that waiting until I am ill is the best way to deal with this.
I am prepared to speak to anyone who can help me with this problem. If anyone knows the name of a good consultant I am prepared to pay to speak to them!!!!
There are lots of issues with the care that I recieved last time (or the lack of it!!!) and I am NOT prepared to go accept it this time.

Hope to speak to you soon.
Vicki XXX

[dmiller]

hi tori - i am a type 1 diebetic -- and unfortunatly was a HG sufferer. It is REALLY hard to manage your diebetes and suffer from HG. I know when i was in the midths of HG - when it peaked around 14 weeks till about 22 weeks - my problem was lows - it hardly ever went high. Of course when i was in the hospital the first time - my indcronlogist made my basal rates on the insulin pump a bit high - so i ranged about 30 to 100 all the time - till the third trimester when i started getting high.

did you find you were in the low area in the second trimester or was it going high? because your eating mostly carb diet ( well i found i couldnt eat the foods i normally ate) the indcronlogist had to increase the insulin to make asure that i kept in range

are you on insulin pump or are you on lantus? before i was pregant i was on lantus and novolin(cant type well today) when they found out i was trying to get pregant i went on the insulin pump because the N and R wouldnt control my diebetes ---

what are you using now? just out of curiousity

if your blood sugar gets out of control by getting to high - it increases the risk of termination

[sarahkate]

Hi Vicki,

It doesn't sound like your care was good last time at all. I had midwives withhold antiemetics to see how much I vomited without them, but the insulin thing must have been really scary.

As for B6, you can take up to 150mg. 50-100mg is enough for now though. I've never tried to buy it but hopefully you can get 50mg tablets, and not have to take 5??!

As for referral to a consultant, well, if your hospital is big enough to have a consultant with a special interest it's probably big enough (if you see what I mean) but it does sound like you were treated badly. I can't believe (well obviously I do believe you) that you went through a termination at 5 months and she never came to see you. I think it depends how soon you want to be trying to conceive. If there is time, then maybe ask for a preconceptual referral to this consultant and just see if things are any better. Then if they are not it may be time to look for a different hospital. What is your nearest London hospital, do you know?? (My geography is a bit hopeless)

Personally I would hold off on going private just yet but it is totally worth having in the back of your mind. I think we had a suggestion of a private obstetrician in London a while back but my brain is a bit sleep deprived, I will ask Natalie if she remembers.

I hope I am helping and not just wittering!

Sarah xxx

[tori]

Hi Sarah,
I can't believe that midwives held back drugs!!! How crap is that??? I'm pretty sure that you can buy B6 over the counter. Dr gave me a prescription for this first load but I will go to the health food shop and check them out. I will def. up my dose though.
When I see my diabetic consultant later this month I will ask to be referred to the consultant and I will find out exactly how much she knows about HG. I can't wait to start trying again, and in a way I think we are. I AM going to have kids!!!!! I am a geography teacher and not too sure where the nearest London hospital is to us!!!! (how bad am I????)
You are def. helping me and it is really really good to just speak to people who know about my condition. Am totally fed up with people who keep saying "it will be totally different next time, and every pregnancy is different" What the hell do they know????ARGHHHHHHHHHH
Sorry just neede to vent!

VickiXXX

[Natalie]

Hi Tori,

So sorry to take so long to get back to you. Life here has been super hectic.

I'm glad to see you have some input not only from Sarah but also from two other ladies who also have Diabetics and HG. I have emailed another one on your behalf also. I am hoping she will stop by this thread soon.

First of all, there are some standard preparations that I say to all ladies who are planning on an HG pgy in the UK. I am in the middle of typing it up into a sticky but to avoid me having to type it all out again, please look at Debbie's thread; it's got all the bog standard info. I normally say ... http://forums.helpher.org/viewtopic.php?t=13845 Debbie was the other lady Sarah mentioned who was considering ghoing privately but I thought her idea of going via the NHS consultant first sounded like a good one.

Obviously your case has extra issues with the Diabetes. The Consultant I mentioned in my post was a specialist in Diabetes and pgy. The guy I saw was a lovely, lovely Dr called Dr. Tim Draycott. He is based at North Bristol NHS trust. I'm sure if you phoned him up at NBT (0117 9505050) and spoke to his secretary, she might be able to pass a message on to him see if he knows anyone in your area who deals with HG and Diabetes. I would tell her on the phone that you had to have a late termination (i.e. after 12w) so he can get some idea of the severity of your illness. I also have a mw friend who works at the hospital and she says that he is a lovely person generally in addition to being a nice Dr so he might help you find someone even though you are nowhere near Bristol.

What else???? Teaching hopsitals near Kent... I would say south east London would be nearest for you e.g. Kings College hospitals (this page mentions diabetes but not HG and it looks like it maybe mw led plus no mention of out of area referrals http://www.kch.nhs.uk/services/womens-s ... y-services) BUT... Guys and St Thomas (I like the look of this because they take out of area referrals from your GP!!! http://www.guysandstthomas.nhs.uk/servi ... rnity.aspx) and St Barts and the Royal London is over in the east end see http://www.bartsandthelondon.nhs.uk/our ... rvices.asp Again, no mention of out of area patients, HG or Diabetes but looks like it's a leader in the provision of maternity services. They may know someone who can help.

Hope I haven't overloaded you with info. and get calling!!!!

Love Natalie, x

Btw, I don't suppose you've see Annmarie's thread in this folder????? Would you be interested in speaking to the journalist? http://forums.helpher.org/viewtopic.php?t=16394

[tori]

Hi Natalie, Thanks so much for all the info. I have had to read it several times for it all to sink in!!!!! I have had a look at Guy's and St Thomas' hospital website and I think I mihjt be getting somewhere!!!! I have now got a list of the maternity team there and all of their specialists. I am going to ring them tomorrow and find out if there is someone there that deals with diabetes and has an interest / specialism in HG. I actually feel like I might be winiing. I know i've got a LONG way to go, but I feel like there is light at the end of the tunnel.
I am prepared to pay for a first appointment to get the ball rolling and then hopefully I will be seen as an NHS patient.
As regards to speaking to the journalist, I did see the thresd but I thought that they wanted pictures whilst pregnant? Maybe I misunderstood. I will think about it again and maybe drop them a line????
I will let you know about my progress durring the week, but if you have any more info please let me know.

Thanks soooooo much,
VickiXXXXX

Ps I hope your baby is better??? X

[Natalie]

Hi again Tori,

About the journalist... well, back in 2005, Annmarie contacted me about a different magazine article - a journo. wanting to talk to HGers and if possible, to someone who had to take the decision to terminate. I got in touch with Mandy and Helen-l-a (who doesn't come here anymore) and asked them to talk to her because they were both more severe HGers than me and I felt it would get the awfulness of the disease over better to Joe Public. The problem was and remains - I couldn't find anyone who had terminated. Neither of them had. It's not because there aren't any UK ladies of haven't terminated, unfortunately are quite a few. It's just that they don't come here any more and I didn't feel I could just pm them out of the blue and ask them if they wouldn't mind talking about their experiences. Especially if they were tyring to come to terms with what had happened and recover from obviously a very traumatic time. I thought it was a bit much to ask. So in the end, we didn't find anyone so the magazine (a real top end of the spectrum pgy and baby mag) printed Mandy and Helen-l-a's stories and put a pic of some model in a pose of 'look how sick I'm trying to look'. The stories spoke for themselves though - yay!! Anyway, the point of me saying all this is that this journo. might prefer to speak to someone who ahs lost a baby due to HG with no photo rather than have nothing at all. I haven't seen Debbie about for a while and she is the only other lady on here currently who has also terminated.

Please, pelase, please don't think I am presuuring you into something. The only reason I mentioned it to you is because you are here and they're not! And you only just joined the site too!!!!

GL calling the Obs! Hope you find some answers.

Love Natalie, x

[Natalie]

Hi Tori,

How did you get on today?

Just to say, I got an email from Bethany (username: Carsonsmommy) today and I replied with a link to this thread. She said she would try and stop by really soon. I am hoping she has some great advice and tips for you. She has done 2 HG + Diabetes pgys.

Love Natalie, x

[natts]

First of all im really sorry of your loss, and hope we can help.

Hi dont know if i can help any support at all, i have diabetes which i survived with my first pregnancy and am currently going through my 2nd pregnancy with severe HG and diabetes.... its a balancing act!

What type of insulin are you on? during pregnancy im on 'Insultard' which is a slow acting insulin, this helps to keep constant levels throughout the day as any 'highs' or 'lows' make your HG worse.

Each time i have been admitted to hospital for rehydration i have had to go on a 'sliding scale' which i am sure you are familiar of! they keep a very close eye and monitor your levels every hour (sore fingers!)

If you have diabetes during pregnancy you will need to visit Guys & St Thomas's specialist scanning centre in london for a 20 week scan, they will examine every chamber and valve in the babies heart to make sure its okay (its also another lovely chance to see your baby!)

The girls on here advised me to get some ketone sticks which have been very helpful, as getting dehydrated etc in pregnancy with diabetes is even more serious but can still be treated in the same way!

Oh and if it helps at all protocols (in sussex but in sure they're be similar in kent) are for ladies with diabetes to be induced at 37 weeks term, so that light in the tunnel is that bit closer!

i hope that helps, if theres anything specific feel free to ask!

good luck xxxxxxxxxxx

[Natalie]

I'm so sorry but I just need to cheer!!!!! How great is this?????? A fellow UK HGer who also has Diabetes. I'm so thrilled lol

Obviously, I'm sorry you guys are in this position but I am really pleased about this

Love Natalie, x

[natts]

natalie - LOL that made me laugh! dont remember the last time!

yes it is good, and shes only in the next county!

[Natalie]

If you can get to see a specialist at Guys Natts, then presumably Tori can too???

How did you go about getting your referral?

Love (the other) Nats lol, x

[natts]

a diabetic pregnancy is instantly classified as 'high risk' so you will be seen by your local hospitals Specialist Obs consultant and diabetic nurse every two weeks for check ups.
The referral to Guys is only for the one scan at 20 weeks, and it will be your diabetic nurse who will make this appointment for you, if they forget remind them!! i saw the 'team' yesterday and will be seeing them again in two weeks when we will also make the appointment with Guys so il see if i can get the telephone number for you lot.

[Natalie]

CHECK OUT WHAT I JUST FOUND!!!!!!!!

http://www.bartsandthelondon.org.uk/new ... ction_id=9.

Love Natalie, x