TTC/ pregnancy on Prednisolone or similar

[freelancegirl]

I am not sure there are enough people here to start a thread but have been chatting on one on the pregnancy boards and was wondering if I could find any fellow ttc'ers on Prednisolone or similar?

I have just received a diagnosis of very high NK cells. It was a bit of a shock actually as it turns out I have some of the highest levels - 3.79 when anything over 1.8 is considered 'very high'.

Am trawling through Dr Beer's book and Dr Google and trying to found out more. I have been recommended 25mg prednisoline steroids for two weeks starting with ovulation, increasing to 40mg if/when BFP and then Intralipids Cyclogest too. I still have 13 days until I pop my first Pred.

There now just seem like so many hurdles - actually getting pregnant being the first one. I was prepared for high NK cells as I have high thyroid antibodies but it was shocking to be in the top 5% of people treated at the clinic. I am not sure if that gives me much less of a chance of being successful.

It would be great to hear from anyone else who is undergoing treatment and of course also if you've had successful treatment.

Hi all, Am in Spain in my childhood bedroom whilst Dad makes salad for dinner and mum is doing my ironing :)

Iggi I do feel so awful for you as you sound like you really think it is over. I really don't think it is at all! Surely pains are just a part of the whole pregancy thing and it is just stretching? To add to that the Pred does do awful things to the stomach. Have you been prescribed Omeprazole? Those of us who have to take 40g of Pred are given that but it might be worth you asking your doc for it too. I hope you do get some good news about it all soon. Go to EPU tomorrow maybe?

Ari I realise that must be a shock for you but yes it is good to have a diagnosis and a clear path of treatment. As for the thyroid thing, incredible that it had to be diagnosed when you are ttc not just from your doctor! I was first diagnosed with an underactive thyroid when I was 21 as I put on three stone in 8 weeks! I am the patron of a thyroid charity and know a hell of a lot about the subject so if you have any questions do ask. Feel free to PM me for my email address if you want to chat further. What were your results incidentally? I always find I work better if my TSH is around 1 but it is recommended to keep it under 2 anyway for pregnancy. I have had a good chat with Mr S about thyroid and he really knows what he is talking about and uses the right normal levels to diagnose. Rather shockingly your GP might think your thyroid levels are normal when they are not as some clinics use a wider range. For some great info on thyroid google Mary Shomon and have a good read.

As for the NK cells. 1.8? Pah! Mine are 3.79 but yes that is still classed as 'very high' and I was on the same treatment. So many people seem to do well on the treatment with your levels though so there is every reason to be optimistic. Apparently no research has been done into whether the higher the count means the less likely you are to be successful but I worry Mr S was just saying that to appease me. My count is apparently in the highest 5% he sees in the clinic. Great... Oh but I don't have MTHFR C677T mutation. What exactly is it...? I have read about it but my brain's going.

There's a great little blood testing place just down the road from here in Spain where you can pop in for a blood test and get the results the next day so I am going to have my thyroid tested to see how it's panning out. It takes about 10 days to get my results back in the UK so worth paying a tenner for an immediate idea of what they are doing!

Thanks so much for your reply free and I will definitely PM you when I'm back on my PC if you really don't mind, I know nothing about hypothyroidism and it's come as something of a shock. I suspect I'm going to have to argue with my GP but I hope I can make her see sense. Only a quick post as I'm on my phone but my TSH is 3.29 and T4 is 11.1 (I believe normal ranges for T4 are 12.0 to 22.0 for T4 and 0.27 to 4.2 for TSH). I presume because my TSH falls into the range for normal although Mr S said it was too high that this is what my GP will quibble?

Hope you're enjoying Spain, and being looked after by your folks! :)

Yes to me and a lot of other people (including, thank god, Mr S) a TSH of 3.29 is too high. At this level your thyroid is definitely underactive. Did he test for thyroid antibodies?

The old TSH levels would say anything under 5 is fine for TSH and not treat you. Many NHS surgeries still go by these levels and are unaware of anything different. Now you are going to be a thyroid patient you will unfortunately have to deal with this regularly. It's one of those things, like recurrent mc, where you unfortunately have to be your own doctor and be a very proactive and informed patient. Try not to worry though, it is pretty manageable once you sort the dose out. Chances are that every few years you will need to up the dose of thyroxine but monitor it yourself and be aware of the normal ranges and you will be able to live normally. But you will probably be on medication for the rest of your life, which might be something you need to mentally adjust to. I was just relieved I had a diagnosis as I had been very ill for a couple of years before I was diagnosed at 22.

HERE is a good article explaining the real normal ranges of TSH.

iggi sorry to hear that you are feeling things aren't going well. The steroids can cause a lot of stomach pain so that might be worth bearing in mind. I asked my GP for some Omeprazole as recommended, I think< by digi and they helped quite a bit. I know in our situation it's easy to think the worst but it's not definitely a bad sign. Fingers crossed for you.

Arianrhod like you say, good in a lot of respects that Dr S has pinpointed your problems, but overwhelming I'm sure to have found quite so many. I think the the MTHFR it's a question of taking 5mg Folic Acid and Asprin isn't it? I'm afraid I don't know much about thyroid problems but it seems there are a few people here that can help including Dr Google's medical secretary - AKA freelance!

digi thanks for asking, my mum did have her operation. They were not able to remove all of the mass (which was not, as we hoped, an ovarian cycst) as it was attached to various delicate organs. She has had to stay in hospital because of an infection and her nutrition levels are very low. They are letting her out early next week for a week to help her morale and then she will be back in to continue to boost her nutrition and possibly recommence her chemo, depending whether she decides to go ahead with that or not. Her test results came back today. It is definitely her cancer spreading so it's quite an emotional and scary time for us all. I have no idea how I'm meant to TTC or find my libido in amongst all of this to be honest! I'm feeling extremely overwhelmed. I'm coming back to London for a few days. The shoot I was going to to whilst I was back may be pushed back, in which case I will have to pass it on to someone else as I will be back here but I need to come home for a bit for my sanity as I have been living alone with my stepdad for 9 days. It's ok, but we've never got on famously and last night we ended up having a fight with him shouting at me which was really upsetting so I could do with getting some cuddles from my proper family and my OH (and of course, the cat!)

Thanks free and kittens. Free yes I was tested for thyroid antibodies and from what I can tell of the results they appear normal (shown as negative) - Thyroglobulin antibody 14.0 and Thyroid Peroxidase antibodies also 14.0. Slightly confused as the little I've now read on hypothyroidism seems to suggest thyroid antibodies should be raised? I can't confess to understand it.

Well I have something of a dilemma ... I can't get to see my GP. I rang yesterday for an appt, I was told to ring at 8am today (we have one of those really frustrating appt systems where you can only book at 8am the day before you want an appt unless it's a dire emergency, in which case you have to book at 8am on the day. And I mean 8am - you ring at 9am, all appts have gone). So I rang at 8am and was told, no appts today as all the docs are on an away day, one appt tomorrow but it was booked by someone else as the receptionist I was talking to was looking in the system. I'm on a First Aid retraining course Mon & Tue next week, so can't go then (no evening appts), and I'm due to OV Mon/Tue anyway, so would need the pred part of my prescription before then.

I'm thinking now since I can't get to see my GP I'll have to get the prescription Mr S gave me filled (ouch to the cost!) and then go see my GP whenever I can. Does anyone know, can you get a prescription part-filled? Then I could get the pred 25mg and thyroxine initial dose now, and wait till I've seen my GP to get the pred 40mg/omeprazole/cyclogest for BFP? Or do you have to get the entire prescription filled all at once?

Free I've PMd you, thank you, and am slowly trying to get my head around this. I need to find evidence I think of the lower recommended TSH levels to go armed into my GP (always assuming I ever get to see her!); I hear what you're saying about I'm probably going to have to fight. I hate our medical system sometimes, just as with RM we shouldn't HAVE to fight for decent medical care!

Just for info, MTHFR mutations basically interfere with the body's ability to absorb folic acid, it's one of several different kinds of inherited thrombophilia. Risks involved with MTHFR are miscarriage, placental abruption, downs syndrome, trisomy, and spina bifida, as well as heart attack, altzheimers, deep vein thrombosis, stroke... the supplementation of folic acid and a baby aspirin everyday for the rest of your life may prevent these risks.

kittens I really hope things with your mum improve, and you need some You-time as well. You certainly don't need arguments with your step-dad, you need to be cuddled and let someone else shoulder the emotional burden for a little while while you recoup a bit. hugs to you for the trials you're going through right now.

Thank you Ari.

I had the same problem as you by the way, when I got my prescriptions. Are you able to get to the surgery before work regardless of getting an appointment? My surgery told me not to worry and that I could just take my prescription instruction from Dr S in to them and they would get my GP to issue the prescription for me without an appointment. The said that if the medication had been recommended by the specialist then they wouldn't question it and that I didn't necessarily need an appointment.

To answer your question about getting a prescription part filled, you can ask for just one of the meds and then get another one of them later. For example, I'd get the cyclogest later if you need an appointment to get the NHS prescription. You can also buy a big tub of the normal 400 microgrammes of Folic acid and take however many of those it takes to make up 5mg each day until you get your NHS precription.

Gosh, that MTHFR mutation is something to get your head around isn't it? I was quite surprised I didn't have it actually as I've had 4 miscarriages and 2 DS pregnancies. I always remember the letters without having to look them up because they seem to, in shorthand, spell out the word Motherf*er!

Thanks kittens ... yes I could get to my surgery before work, but I honestly can't imagine them being as helpful as yours have been. Whereabouts is your surgery based? It would be absolutely fabulous if they would take the same approach as your surgery, but since they throw up obstacles in every other respect I can't imagine them being helpful here! Actually I rather assumed that my GP would have to see the blood test results before even considering issuing me what Mr S has prescribed, especially for the thyroid drugs? My GP was very reluctant to even give me 5mg folic acid so I'm not too hopeful :( Worth asking, though!

My GP is in Islington (London, in case you're not familiar!). He is super helpful I have to say, as is the surgery. And lucky for me it's also 3 mins walk from my front door!

Why don't you give your surgery a call and have a chat with them.

I know Islington fairly well, most of my family hail from (and are mostly still in) Stoke Newington :) Yes, I'll try to muster up the courage .. my dealings with my surgery have rarely been what I would term 'helpful' ... !

Just a quickie from me as my brother has just arrived from the states but aggggh! Ari, I have loads of thyroxine and Pred at home in England but haven't brought any spare with me!! Maybe I could ask DH nicely if he could send some to you? I will PM you!

Hello. havingkittens I'm sorry you are going through so much at the moment, that is really testing your strength and just seems so unfair on top of everything else.
Arian just to say (negatively!)my GP will not prescribe the steroids etc on nhs, it is very much up to the individual I think.
Have been to see gp this morning, she is nice but powerless to do much. Have had upper abdominal pain for 24 hours now. Had hch taken again (though warned this my not have fallen yet) and am to go for the pre-booked scan on Monday. I imagine that will be inconclusive, and they'll ask me back in a week. All after me knowing for sure it is hopeless, every day is a torture as I will start to let hope back in when there is NONE. When it's wrong, I just want to get off the meds so I might bleed and get back to being just me as quickly as possibly, not some dead baby factory.Sorry for the rant I have no-one to talk to.

Hello to scooter and welcome. I?ve only just joined too.

Havingkittens ? Sorry to hear that things are so difficult with your mum. It?s such a lot to take on, and having to deal with the whole ttc thing on top must be really hard. I hope you have a chance to relax at home for a while to recharge your batteries.

Iggi ? Sorry you?re feeling so awful too. I think you asked about nausea earlier on. I started on the pred when already pregnant and noticed a definite easing off of nausea almost straight away, so please try not to worry about that. The others are right about the pred causing stomach problems too. Please don't give up hope completely. How frustrating that you have to wait until Monday. Is there an EPU near you that you can walk straight into and get a scan today? I know of a few in London, but I?m not sure where you?re based. Is the pain you?re experiencing the same as you have had with previous losses? I know the wait for news is horrendous and I?ve got everything crossed for you.

Arianrhod ? You?re going to think I?m stalking you! I also saw Mr S yesterday (we had our original appointments one after the other as well) and he talked through my results too and I have to say, although Louise had gone through some of it on the phone, when he explained it all to me I felt totally overwhelmed, so I can completely understand how you feel. Mr S put quite a positive spin on it all, saying that we have a plan of action now and loads of people get normal results and are really disappointed but I feel incredibly anxious about the whole thing.

My natural killer cells count was normal but the activation was very high (3.32) hence the 40mg of pred and intralipids. I?ve also got factor II mutation-prothrombin mutation which requires clexane injections and that, combined with a borderline positive lupus anticoagulant test, means that I?m at increased risk of blood clots. Hurrah! My TSH was 5.95 so I?m on thyroxine. I?d never had my thyroid tested before so this was interesting. Thanks for the thyroid info Freelance ? I?m going to check out that web page you linked to.

He persuaded me to have a scan as he wanted to check for blood clots and I sobbed the whole way through as I was terrified and didn?t want to do it without dp. All good though. Baby measured 8+1 and heartbeat was 160bpm. So of course I sobbed some more and was a horrible sweaty mess by the end of it. He did find a little blood clot though, so I?ve got to stop the aspirin and wait for the results of my repeat lupus test to see what happens next. Got another NHS scan booked for tomorrow.

I had no idea about getting free prescriptions with an underactive thyroid. I?ve just forked out £130 for my clexane etc! It really makes me appreciate the NHS. Did the first injection today. Not pleasant, but actually fine. Is anyone else on clexane too?

lol Coconut we were probably in the waiting room at the same time then! :) I have to go back for a post-first-steroid-cycle appointment in 3 weeks, see you there probably ;)

Crikey, it sounds like we've got the full range of just about everything between us! Fabulous about the scan, I understand your terror but oh my what a brilliant result!

The free prescriptions are a definite if your GP concurs you have hypothyroidism and to be honest, your TSH is above the old "standard" range of the upper limit being 5.0 so you shouldn't have the same fight I suspect I'm going to get. You need to ask your GP for a form to apply for an exemption certificate .. if it helps, this is from patient.co.uk:

Free prescriptions

If you have hypothyroidism, you are entitled to free prescriptions. This is for all your medicines, whether related to the hypothyroidism or not. Ask at your GP surgery for a form to fill in (form FP92A) to claim this benefit.

Source page is www.patient.co.uk/health/Hypothyroidism-Underactive-Thyroid.htm .

Iggi so so hoping you're wrong (in the nicest possible sense, you understand!) and it's just the pred buggering around with your stomach. Can they not scan you before Monday? That seems a heck of a long time to have to wait?

free Big Thank you again .. have emailed you :)

I have to say, what a fabulous thread this is, and what a terrific bunch of gals you are. It just makes a huge difference to me knowing there are people who understand what I'm going through, and don't just brush it aside.

Does anyone know how Georgie is, by the way? Was thinking about her, and hope she's doing as well as can be expected.

Another quickie from me as am heading off into town and also busy being a drug courier for Ari and asking DH to post them tonight :)

Gosh coconut that sounds like a lot to have gone through! It also gives me a lot more faith in Mr S as he really seems to know his stuff. Great to see the baby was ok! Yes I can certainly help you with thyroid info. And Ari is right your doctor should be ok treating you for hypo with a TSH over 5. It's the under 5 that can be challenge. But there are now a lot of GPs who realise that over 3 is still underactive. Oh girls, welcome to my world. I have been dealing with this since I was 21. BUT I am generally fit and healthy with only the odd thyroid relapse that I have learned to identify and adjust medication accordingly so please try not to worry too much - the good thing is that you have been diagnosed. Once you get treatment you should be a lot better.

And yes, all prescriptions are free when on thyroxine! You may need to get a Medical Exemption Certificate which you should get via your doc.

Kittens so sorry to hear the situation with your mum isn't getting any better. We are thinking of you.

And yes it is great that we all have each other here, all of us going through the same weird treatment.

Hiya,

iggi how are you doing? Thinking of you, it's so hard watching for every sign, hope your EPu have been reassuring. Are you able to access any counselling where you are? I didn't expect it to but it has really helped me to stop thinking the worst and I am hoping to continue with it into early pregnancy to help keep me sane. I know it will totally mess with my head to be pregnant again, really feeling for you.

freelance hope you are getting some sunshine, and a lovely break.

Thanks everyone for your quickfire advice - brilliant! I have a friend with an OPK she didn't use so I will give it a go and see if it backs up my estimations! I want to try and get it right but it's no exact science is it, I tend to conceive early in my cycle so just I hope I don't miss the boat or waste the tests by testing too early!

I am pretty freaked out with the thought of adding another two drugs to my five a day habit, I have never been keen on taking pills and already forget the ones I am taking! But seeing as I am feeling healthier than I have for a long time, there's really no excuse (except being scared!) not to get on with it. I am reassured by feeling I can come on here every so often and if I have a weird side effect I imagine someone will have seen it before. I have about six days now, so watch this space!

Hope everyone else doing ok :-)

hello! here I am - not quite missing in action but lurking. Think OV day is today so should be in the 2ww from tomorrow.To all those who are pregnant - don't forget prescriptions are free when up duffed :)

coconut I have factor v leiden so I too am on clexane when I am pg - which hopefully will be in the not too distant future!

Will slink way now - house moving tomorrow so will lurk around but won't post as i will have no internet connection!

Up duffed ... I love that term May we all be in a merry state of joyous up-duffedness RSN (real soon now) :o

Oh dear I appear to have missed about 100 posts while I posted my message on an older page....blooming fiddly phone!! Wow things move so fast on this thread. Anyway that explains why my message didn't follow the others! I will just read back and catch up with everyone.

Morning all
I'm afraid I'm becoming obsessed with seeing the midwife, going again today for a listen to heartbeat. I know it's bad as I was only there on Monday but were going away for the weekend and I Just want to enjoy it as I usually see the MW on Mondays and we won't be back til next tue so I'm also seeing them again next wed to ensure all safe after the flight. I no flying is safe but honestly , as I'm sure u all understand , I am literally a nervous wreck and just can't enjoy the pregnancy ATM
My MW said it's fine and it was actually her who said to go today and next wed so as long as they are offering me the care then I don't see a problem. Plus we have paid a fortune to be treated by mr S so surely now I should be taking everything I can for free ! Am I being unreasonable or would u guys do the same?
Sorry for the self indulgent post x

Hi Scooter yes things are moving quite fast on here now we have a few of us. How many of us are there? I can't work it out and can't be arsed to do a list...

Stogan I think it is understandable, you would be freaking out whether you were able to go and see the midwife or not. I would suggest maybe getting that dopplar after all? It does no harm and it means you can listen to the heart beat at home whenever you want.

Stogan you're not being self-indulgent, and it's what we're here for! If it were me, to be honest, I'd take everything they offer. All reassurance is good reassurance, in my book!

I'd agree with free .. I've heard the Angelsounds doppler is good, and I suspect if I ever get that far, I will probably buy it .. and be obsessed with hearing the heartbeat myself. I know they say there's a knack finding the heartbeat, and they're really only much use after 16 weeks is it?, I forget, but I know of several ladies who have bought a doppler (from another internet forum) and it's given them huge peace of mind. Just a thought!

stogan nothing wrong with going to see the mw as often as possible. It's perfectly natural that you'd still feel anxious. I'll be expecting similar support when I get to your stage! I have 11 days till my next scan. The longest I've gone.
Oh and thank you very much for the cyclogest - got it yesterday!!! What a prompt postal service we have!!!

Stogan, if I were rich enough I'd hire a midwife to live in and check me round the clock! Perfectly understandable.
Well I got yesterday's hcg results back, and they still seem to be rising appropriately so it's all down to the scan on Monday. I really do believe it has gone wrong though, and it is very painful to get the "false hope" of good hcg results. I just thought I'd be able to come off the progesterone if they were low. I don't think I can ever do this again!

Fingers (eyes, toes, ears and everything else) crossed for Monday's scan Iggi.

Just a quickie from Espana. Ari DH posted consignment of drugs last night so we are truly a well organised service. Have given you 7 days supply of 25mg Pred and 50mcg thyroxine (2 x 25mcg tablets at day). Hope that suffices! He says the doc looks really dodgy so he printed out a copy of the email with it to prove it was official meds in case anyone checked :)

Iggi glad to hear HCG is looking good. Hope it all works out well on Monday.

Hello to everyone else! xx