Methotrexate and nutrition + things I wish I knew

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1

So… I had an ectopic pregnancy in January. Discovered at 6 weeks. Had surgery but they didn’t manage to get it out, levels were still rising, so I had to have an injection too!

Day 1 – 900. MTX administered.

Day 4 - levels went up to 1600

Day 7 - about 1400… recommended a second injection but they agreed to wait a few more days.

At day 11 they dropped to 800

Then it took 3 weeks to get to zero.

I still haven’t had my period and it’s been like 2 months since the injection. But am no longer bleeding and felt like I ovulated last month.

There are a few things I wanted to share about the MTX that I wish I’d known!

  1. Bright (like NEON) yellow wee and runny poo (sorry TMI!) – I wish someone had told me, it was horrid!

  2. Rest rest rest. It just knocks you out… I’ve never felt so tired in my LIFE.

  3. Nutrition and folic acid: there’s a lot of confusion out there about this so I really wanted to say what I found helpful in case it’s useful for any of you:

So… MTX is a folic acid antagonist. It kills the pregnancy by stripping your body of folic acid, without which the pregnancy can’t continue. The best way to help it along is to minimise folic acid in your diet – essentially do your best to give yourself a folic acid deficiency – as otherwise it’ll just strip it from the food you’ve consumed and will take longer to work. I don’t know if this is just a coincidence, but when my 7 day results weren’t quite 15% I became very strict with the diet and it really seems to have helped things along!

There are 2 types of diatery folic acid: folate (found naturally in foods) and folic acid (supplements in cereal, flour etc.) If you live in a country that enriches food with folic acid I really feel for you because it makes it so hard to get any staples without it! You can check your country here: [website removed per Trust policy]

Luckily the UK (and the EU generally) doesn’t do it so I could have bread, pasta etc. However American breakfast cereals are enriched as are other goods imported from countries that have an enrichment programme. The idea is to help avoid birth defects in the population but a problem when you’re being treated with MTX for ectopic…

In naturally occurring foods, these have little to no folic acid:

Dairy, meat (except for internal organs), poultry, fish and seafood, white flour, most highly processed foods.

EVERYTHING ELSE seems to have it: grains, nuts and seeds, pulses, fruits, veg, eggs… some more and some less. Nuts, pulses and some fruit and veg are super high in it. Eggs are ok if it’s one egg here and there. Re fruit and veg – I found that going on Wikipedia for each item helps as you can find the folate content for each and figure out the portion weight (obviously some things are heavier than others – potatoes weigh more than mushrooms) to calculate what you’re getting. Another name for folate is B9. Essentially you want to get less than the RDA to give yourself folic acid deficiency!

Now, they said at the hospital not to worry just not to take prenatals. But my diet is usually SUPER rich in folate! If you live on cheese and processed foods this probably isn’t an issue for you, but it was for me. In case it’s useful, here is what I ate and avoided:

No pulses, nuts, seeds, peanut butter, grains (inc rice!)

Marmite is very high in folic acid… avoid. As is seaweed.

No veg apart from cucumbers, peppers, small portions of boiled carrots without skin and small portions of mushrooms, as all are a bit lower in folate than other veg.

No fruits apart from blueberries, which are pretty low in folate. Note that oranges, citrus fruits in general and bananas are high in folate…

Also – green tea is a folic acid antagonist, which is why they recommend to avoid it during pregnancy. I made sure I had at least one cup per day.

I had protein-heavy meals with chicken, fish and seafood; plus a lot of cheese and dairy products. You can actually eat pretty well! Ideas –

Plain yogurt with blueberries for breakfast

Sandwiches with cream cheese and smoked salmon, or bacon/ham and cheese

Cheese on toast

Buttered crumpets (yum!) maybe with a poached egg on top

You have an excuse to eat lots of steaks!

Maccaroni cheese, can use a variety of cheese inc blue cheese or put in bits of meat/fish

Spaghetti carbonara

Fried or grilled tofu

Asian style soup – chicken in coconut milk with ginger and small amounts of carrot, pepper and mushrooms with noodles

Cooked fish/meat with pasta parcels or gnocchi

Lobster – at one point I was so annoyed with feeling like shit I actually treated myself to some lobster! Why not eh :wink:

Ooooh and cakes, honey, chocolates etc. are all allowed :slight_smile:

I don’t actually know what vegans would do in my situation… and anyway as I said, I don’t have an evidence base to back this up so this is just what I chose to do.

Oh, and no-alcohol blues can be helped with elderflower or ginger cordial to make classy fizzy drinks that you can pretend are a bit like bubbly wine.

Good luck to everyone! Big hugs. It sucks, but it does end and now I get to eat spinach and liver with a pint of ale (believe it or not, I was actually excited about this!) xxx

2

Thankyou for your post, a lot of very useful information.

I am just recovering from my emergency surgery which took place on Wednesday evening. They removed my left tube and ovary as my pregnancy had attached itself to my right ovary.

I was 12 weeks along and had been told 3 weeks earlier that my cervix was open and that I was having a miscarriage. But after very little bleeding and a lot of pain I still had a positive pregnancy test, so I was called in for a scan. Ectopic pregnancy diagnosed.

Turns out that the pregnancy had grown to be bigger than my womb and had just started to bleed internally. So with this in mind I am due to go back to hospital on Thursday for a blood test and then I may need follow up with the injection(s).

So thankyou for sharing your experience…

3

Dear Lola,

I am so sorry to hear of your ectopic pregnancy and loss,

Whilst we at the Trust are not aware of any evidence supporting stopping specific foods following methotrexate injection, you may wish to follow a diet low in folic acid. The link below gives ideas of foods rich in folic acid and therefore gives an idea of which ones you can avoid.

https://www.nhs.uk/conditions/pregnancy … -pregnant/

As you have correctly said, you should stop taking any vitamins, minerals or other medicines unless you have been told by the doctors treating you to continue with them, as some medicines interfere with the effects of methotrexate. It is particularly important that you do not take any folic acid supplements until your doctors are sure that the drug has worked.

Apologies, I have had to remove your link as it is Trust policy not to promote links to websites we are unsure of.

The hCG level often rises on the day four blood test because the action of Methotrexate is not instantaneous, so the cells will have continued to divide for two or three days after the injection was given, and some cells release more hCG when they start to disappear. I am afraid it is difficult to predict how long it will take for hormone levels reach non-pregnant levels. As we are all individual, our bodies respond differently to the drug and it depends on factors like how high levels reached and our unique physiology. What I can say is that it can take a number of weeks and, while it can take some time, it is not as invasive a procedure as surgery.

As a gentle reminder, with Methotrexate, you should wait until your hCG levels have fallen to below 5mIU/mL (your doctor will advise you when this is through blood tests) and then take a folic acid supplement for 12 weeks before you try to conceive. This is because the Methotrexate may have reduced the level of folate in your body which is needed to ensure a baby develops healthily. The Methotrexate is metabolised quickly but it can affect the quality of your cells, including those of your eggs and the quality of your blood for up to three months after it has been given. The medicine can also affect the way your liver works and so you need to give your body time to recover properly before a new pregnancy is considered. A shortage of folate could result in a greater chance of a baby having a neural tube defect such as hare lip, cleft palate, or even spina bifida or other NT defects. This is why the “wait” and then taking folic acid for 12 weeks before trying to conceive is so important.

Sending much love and warm hugs,

Karen x

If we have been able to help you, are you able to help us with a small donation or by volunteering?

Further information is available at www.ectopic.org.uk

Email us at ept@ectopic.org.uk.

Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).

Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team.

4

Hi all, so sorry for this difficult time you’re all going through. I thought I’d share my experience too.

On 10 March I went to the doctors after suffering from severe pain on the right and spotting (roughly 5-6 weeks pregnant). I was given an US which showed nothing in the uterus and suspected EP in my right tube, but as the pain had gone I was told to return in a couple of days for another ultrasound. I then experienced the same pain the next day and had another emergency US which confirmed the EP and I was given the Methotrexate. My HCG levels were as follows:

10 March: 1305

12 March: 1139 day of mtx

14 March: 1127

19 March: 958

26 March: 332

The biggest drop was seen in the week just gone and although it could be a coincidence, during this last week I really cut out as much folate rich foods as possible as started drinking green tea (1-2 cups a day). I feel that this has worked for me and will continue on this basis.

Hoping that I have another big drop on Monday! Will keep you all updated.

Keep strong ladies, wish you all a speedy recovery and lots of luck for the next round of ttc. We will get through this! xx

5

Just wanted to thank you for this original post about nutrition – I read it just after I had the injection and followed your advice and my levels fell really quickly and easily. A small positive in a horrible situation. x

6

This is super helpful and thank you for sharing. I agree, wish there was more of a diet guideline at the beginning of this process.

7

Thanks for sharing your experience. Stories like this make those who will subsequently walk this path find strength. My wife had an ectopic pregnancy. It’s been a really tough time for her. I came here to find encouraging stories for her and also to figure out what foods I can prepare for her. It’s sad women have to go through these experiences. I wish you all strength and the best.

8

Thank you for posting this information on diet. I had my Methotrexate injection two days ago and feeling very tired and nauseous. I’m 35 and really want my hCG levels to return to normal ASAP so I can move on and start ttc once it’s safe to do so. Had a molar pregnancy last year too so this was my first pregnancy since then. Lightening striking twice. I’m hoping it’ll be third time lucky for me… :crossed_fingers:

9

Thank you for this original post.

I really think the information given about nutrition is lacking from the hospital. I wasn’t told to have any dietary controls and I am convinced that this resulted in me having to have two methotrexate injections. I made sure I ate really healthy that first week to help me be ‘healthy’ so I basically ate all the wrong foods.

My levels in the first week hadn’t dropped enough, going from 3200 on day 1, to 5800 on day 4 and only down to 5100 on day 7 which resulted in the second dose.

I was distraught and in a mess after that second dose as I’m 38 and have no children. It was only then that I read about the diet and I’ve literally stripped my diet down and my levels fell to 2200 on week 3. I now have a two week wait to get my next test done as the lady in the EMU was going on annual leave. I will buy some green tea tomorrow!

I really think they should stress more about how long this takes too as it’s so damaging to your mental health. I’d told work what had happened and they all seem to think I should be over it now being a month later but I feel like I’m just stuck in the same old horrible cycle.

10

Dear Bht,

I am so sorry to hear of your ectopic pregnancy and loss,

I am afraid it is difficult to predict how long it will take for your hormone levels reach non-pregnant levels. As we are all individual, our bodies respond differently to the drug and it depends on factors like how high levels reached and our unique physiology. What I can say is that it can take a number of weeks and, while it can take some time, it is not as invasive a procedure as surgery. It is also encouraging that your levels are falling steadily although I appreciate that it can be a drawn out process. Also, in terms of chances of future successful pregnancies, studies do not show a significant difference between treatment routes, whether surgical, medical using methotrexate or expectant management (allowing time for the body to resolve the pregnancy itself).

I am surprised to hear that you are now having to wait 2 weeks for bloods. We recommend levels should be checked every 3-7 days, so a week apart maximum. They should have policies in place to cover staff members who are on leave and I would follow that up and request a test next week.

Sending much love and warm hugs,

Karen x

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During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.

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11

Thanks for your reply Karen. My post should have said my hcg had dropped to 820 on the 3rd week (19th June), can’t believe I missed that out, which is why i presume she was happy to leave it 2 weeks. I’m back at 9 this Friday 3rd July. Counting down the days now - it does seem like a long stretch not being monitored. I’m still having twinges on my right side and bleeding but otherwise feel reasonable. It would have been a lot better to have had the reassurance yesterday on day 7 that it was still dropping.

I’m also just in this whole mix up of worrying that I still have a damaged tube inside me so convinced if I conceive naturally this is bound to happen again. Having to lose another 6 months to this pain and wait again would leave me at 39 given that I’m unlikely to be able to try again until November at this rate. I know the % chances quoted etc but I’ve seen so many people on here (Helpfully) talking about it recurring more than once. Thinking paying privately for IVF at my age (38) may be our best and safest option even though the risks are still there. Especially as the nhs aren’t even offering early scans at the moment and who knows how long that will be for. It might be our only hope. I’m going to phone my GP next week and ask for a private referral for advice to avoid delays!

12

I want to thank this post (and the EPT forums in general) for being the most practical advice I’ve found as I’ve gone through this ectopic pregnancy saga.

After I got the shot of Methotrexate on July 23, my digestion was very “off” and sluggish and my energy was low, so for the first few days, I kept trying to do what usually works for me if I feel crummy (i.e., eat lots of beans, lentils, kale, healthy fruits and veggies, etc. to help my immune system and clean out my digestive tract) and I kept feeling terrible every time after meals and throughout the day. I’d have horrible indigestion, gassiness, bloating that would cause me pain and press on my left tube which was tender, and then I’d freak out that the pain was an early sign of my tube rupturing. I went through this cycle for several days before reading on this forum about cutting back on folate to help the methotrexate work and reducing fiber to not overload my weakened digestive system. Since changing my diet two days ago, I feel so much better and I’m no longer feeling the horrible bloating and painful indigestion that kept me super nervous and anxious.

I’m now on Day 7 of the methotrexate and I was very worried to get my results since Day 4 had been a big jump up (from 836 to 1,373) but this morning my HCG was down 33% from its high on Day 4 to 922. I have no idea if the low folate/fiber diet helped achieve this, but it certainly has made my side effects/digestion issues way better and this has helped me feel less anxious. I know I might still have a long path ahead of me for my HCG to go back down to zero and to start feeling better after all these yucky side effects, but I feel like I finally have some hope that the numbers are going down for the first time. And it just helps me feel a lot less frustrated and freaked out since there is something I can do to alleviate the pain from bloating/gassiness and maybe (?) help the methotrexate work better. Thank you so much for sharing your experience. You really helped me.

13

Having the mtx injection today after experiencing my second ectopic, the first ruptured so I lost my tube and trying not to let that happen again. This is really helpful advice re diet. I’m a bit scared about the mtx as it’s a really strong medication so knowing there is something I can do gives me a sense of control, so thank you for that.

14

Thank you all for sharing your experiences, this forum has been so helpful as I navigate my ectopic pregnancy. I found out it was ectopic on Nov. 7th and was given the MTX shot in November 13th, but my doctor did not tell me in advance how long the process could be or that I would have to eat a low folic diet, so it was all a surprise to me. Today Dec. 18th my levels are down to 35- it has been an emotional roller coast. I haven’t had any bleeding or spotting in about 3 and a half weeks and randomly today am bleeding. Did any of you have a similar experience? I am not sure if it’s normal or not to start bleeding again so close to non pregnant levels after not bleeding for so long.

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Dear Hkirchin,
I am so sorry to hear of your ectopic pregnancy loss.
Not experiencing vaginal bleeding after being treated with methotrexate is not something you have to be too worried about. Some will not experience bleeding as a side effect with this medical treatment option. Some women will experience spotting or bleeding all the way through. Some people will experience bleeding when the hCG has fallen, which sounds as if this is happening in your case.
It is very rare to rupture at such low levels, however if you do experience heavy bleeding (so you are changing sanitary wear every 30minutes) or an increase in pain, or feel dizzy and unwell, please seek urgent medical advice, just to be on the safe side.
Sending much love,
Karen x