Newbie here. My wife was diagnosed with MS in August 2016. This was at the same time as considering trying for a baby.
Im pleased to say my wife is pregnant now but I have a small question.
We were encouraged prior to pregnancy to take vitamin D suppliments. My wife takes one currently that gives her 125 micrograms.
Has anyone else taken Vitamin D whilst pregnant? If so, how much is the dosage? The midwife isn’t sure if take such a high dosage is too much. As a result my wife has stopped taking vitamin D but I’m concerned that without taking it, shes doing herself more harm.
Anyone else been in the same situation?
I’m guessing she’ll be consultant led care with having ms. If it were me I’d stop taking it until she sees the consultant obstetrician and check with him/her. Alternatively, contact the ms nurse or neurologist’s secretary for their advice.
Congrats by the way
The Barts Blog has covered this subject a few times and worth doing a search. This entry was from 2015.
“Low vD levels in the womb may affect how the immune system develops; we think the thymus malfunctions and does not educate the developing immune system properly. This is why we recommend that all female MSers try and keep themselves vD replete during pregnancy. To do this you probably need ~10,000U vD3 per day.”
Hello! I’m 9 weeks pregnant and when I went to see my GP a few weeks ago she told me that it’s now advised that along with folic acid, all pregnant women should be taking vitamin D. So I went to an organic shop and got a good quality Vitamin D capsule that gives me 4000iu per day. This is quite high but as I’m pregnant, have MS, and it’s winter I think I need a boost. I will continue to take it after the baby is born as it’s good for my MS. Also I do feel more energised on it so that can only be a good thing. X
Hi and Congrats!
Just putting my 2 pence in - I am 29 weeks pregnant, I am under a consultant. Previously always took vit d but was advised to stop when I fell. They said if my levels dropped I would be informed and we would discuss taking it again.
Seems from the above we are all given different advice…maybe depends what yours levels are at the time.
Good luck with everything.
Thanks for all the replies everyone. We are both excited about the news (although admittedly a little apprehensive).
@Hayley894 - When you say you are under a consultant, do you mean a Neurologist or Obstetrician? Our MS Nurse did say that if we fell pregnant we might not see the midwife as much as a do the Obstetrician but so far its just been a Midwife appointment.
Cooper - both, Neuro and Obstetrician. To be honest the neuro side of things is very quiet as there is little that can be done for MS whilst pregnant. But, luckily pregnancy has been very good to my MS (one minor sensory relapse) - but I am in good contact with the neuro as I plan to start Lemtrada pretty much as soon as baby is here.
I was told straight away that I would be put under an Obstetrician, but I didnt actually have my first appt with him until I was 20 weeks. He is very happy to see me, and will see me again at 30 and 38 weeks. He reviews my bloods etc etc but to be honest - its more use seeing the midwife. For me personally, having MS doesnt seem to have had any impact on the pregnancy at all. Obviously I came off all medications and my birth plan is in place to make the right people aware of the fact I have MS, and that fatigue, mobility may be an issue in labour. It also notes things like I wouldnt want a hot bath as that sets my msey things off.
Please take notice of Whammels advice re the 10,000ius VitD3 daily. lt is so important for everyone - let alone someone with an auto -immune disease. Healthy Origins softgels - 360 - 10,000ius are the best and Amazon is the easiest and cheapest to buy.
l am following the The Coimbra Protocol Vitamin D. Which involves taking much higher amounts according to your weight.
Facebook groups such as Vitamin D Protocol - North America.
High Dose Vitamin D for Autoimmune Diseases.
Just to throw my experience into the mix. I was referred to an obstetrician during my first pregnancy and if I’m completely honest it was a total waste of my time. The neurologist that was present during the consultation took a history then at the end all they said to me was that they would treat me no different during labour than they would with someone who doesnt have MS! Oh well, it got me an afternoon off work I suppose but what a waste of time. I never saw that obstetrician or Neuro again and nothing was ever mentioned during my labour about treating me differently. All my regular neuro wanted was to see me 6 weeks after the baby was born and to make sure I went back on the copaxone the day after the birth. No breastfeeding. Different hospitals/midwifes/neuros obviously have different ways of doing things for sure. X
Thanks for everyone’s help with this. I’ve asked the Midwife to call me back and asked the MS Nurse to do the same.
Its a little frustrating that you have to leave voicemails for these people to call you back and the turnaround time is 48 hours. I’m doing the telephone call chasers to try and relieve the stress to my wife.
My wife has stopped the Vit D supplement. She actually is taking a pregnancy vitamin supplement anyway and that contains Vit D but at a much lower level.
I know getting news that you’re pregnant is great but so far it has been more stressful than excitement as there does appear to be a real lack of understanding when it comes to pregnancy and MS. GP’s/Widwifes seem to offer a different stances to that of the MS Consultant that we speak to. And as all of this is via voicemails whereby you have to wait up to 2 days for a call to be returned is driving us both nuts!!
So the latest is this…the midwife has consulted our MS Consultant and they have both suggested that she takes the RDA of Vit D and no more. They said there isn’t a great deal of knowledge on Vit D and pregnancy so they wanted to be extra cautious.
Whilst we were waiting on them to come back to us, my wife had actually contacted the Vit D society (I didn’t know there was even such a thing!!). They told her that they recommend pregnany mums to take 4000ui per day.
My wife was only diasgnosed a frew months back but the one thing I have found so far is that there is quite a lot of mixed messages when it comes to this illness. Somewhere in the middle is probably the right course of action!!
How has everyone else found things since diagnosis? Mixed messages on diets and vitamin recommendations??
The information on the Barts Blog is quite clear and written by the Professor of Neurology at a leading London Hospital. Hopefully, he knows his stuff.
“I currently recommend to woman with MS who are planning to fall pregnant, or who are pregnant, to take 10,000IU of vD3 per day and test blood levels after 4-6 weeks to adjust the dose; I target blood levels above 100 nmol/L and less than 250 nmol/L. My recommendation is simply based on an evolutionary medicine perspective as proposed by Reinhold Vieth. There is epidemiological evidence that low vD levels in utero and childhood may increase your risks of developing MS. This is particularly relevant to children of MSers who are already at increase risk due to genetic loading. I say vD supplementation may reduce your risk of getting MS, but I cannot be sure. Until we do a well powered definitive MS prevention studies we can’t be sure of this.”
Cooper I guess it depends on what the current vitamin D blood level is. Do you know?, the level may be within the Barts MS suggested range already of between 100 nmol/L to 250 nmol/L. Has your wife had a recent blood test to check?
I used an online converter tool and 125mcg is 5,000iu of vit D. This is what you mentioned your wife had been taking before recently stopping but is now taking a much lower amount in the pregnancy supplement.
My MS journey started 34yrs ago - l looked as if l had suffered a stroke - slurred speech - loss of use of left side - could not feel my left foot touch the ground. All very alarming as l was only 35 - AND l was pregnant!!!
Since then - l truly believe that it was low vitd3 levels that attributed to my MS. Another life is growing inside and needs lots of vitamins/minerals etc - and it is so important to make sure you have enough for your own health as well as a growing baby. And l actually breast fed my daughter until she was 12 months old. Now l know that breast milk contains hardly any D3 - unlike formula milk which is fortified with D3
lts not that long ago that ‘Spina Bifida’ was found to be the result of a low folic acid level. Such a simple thing to adjust - but it caused decades of babies being born with horrendous degrees of deformity.
We now know that vitamin d3 - which is a hormone - is needed in much higher levels than previously thought. Our doctors have to work within the guidelines that they were taught - and the nhs still use - which is 50 + years out of date.
As l have previously said - l follow the Dr Coimbra Protocol for Auto-immune diseases - and take very high levels of vitd3. l also get my levels checked by CityAssaysLab B/ham -
Please follow what Whammel has advised - - and ALL of you start taking 10,000 iu softgels Vitd3 - daily. [ babies and toddlers1,000ius]
I’m not sure I would want to take 10,000iu a day as my level is over 140nmol and I have been taking 2,000iu or 3,000iu a day. I seem to adsorb the vit D supplement well. But we all have different bodies and different ideas what is good for us.
l was taking 20,000ius daily for about 2 yrs before my level reached 98nmols. Now l am on the Coimbra Protocol - l take 60,000ius daily and my level is 130 ng/ml. l also have to take magnesium - and K2 - which is needed to direct the vitd3 to where it is needed. And a dairy-free diet - as you must keep calcium levels low. lt is the calcium that causes the problems - too high a level and it causes kidney stones. l have to drink 2.5 litres of water a day. And this has to be bottled water that has low calcium content. Tap water is usually fortified and can be very high. My GP has done the PTH blood tests for me.
Read Ana Claudia Domene 's book Multiple Sclerosis and High Doses of Vitamin D. You can download it as well on amazon.
Ana has been following the Dr Coimbra’s treatment for her MS for 12 yrs. And she is very fit and well now. Just google it.
Thanks to everyone for their comments so far. My wife has been given a recent blood test and they have found her Vitamin D to be twice as much as it was when she was diagnosed (approx 100nmols). She’s going to keep taking the RDA of Vitamin D for a NonMS adult but will keep asking for blood samples to keep an eye on this until the baby is here.
To put your mind at ease - there has been lots of info on the facebook groups High Dose Vitamin D for Autoimmune Diseases - and also Vitamin D Protocol North America - on pregnancy and taking high doses of vitamin d3.
Researchers have found a link with vitamin d deficiency and Autism in Pregnancy. Google this.
And also google Pregnancy and the Coimbra Protocol.
Try to keep levels rising - between 175/225 nmols.
Dr Coimbra is the leading Neurologist in Brazil. He has been treating autoimmune diseases very successfully for 12yrs with Vitd3.
Mums in these groups have gone on to have a good pregnancy and happy healthy babies. And that is on fairly high levels of D3 - 50,000ius daily.
ln the UK - most of our GP’s are still in the dark ages when it comes to the miraculous D3. Of course, the big pharma companies are furious as they cannot make any money on Vitd3, and would rather we took their toxic drugs.
Here’s a study showing that keeping Vitamin D levels high during pregnancy reduces the risk that your baby will have allergies when they are older.
Also, low levels of vitd3 during pregnancy can cause MS in later life, Autism, ADHD.