Getting pregnant after loss with postnatal thyroiditis (hypo stage)

[Hopingformyrainbow]

Hi,

I’m looking for hope/ information. I have never had any issues with my thyroid prior to pregnancy. I had a perfect pregnancy however in June I lost my daughter at full term due to an incredibly rare pregnancy complication - a fetal maternal hemorrhage. We are absolutely devastated and always will be. I fell pregnant again in Oct/Nov however at an early scan it was found that the baby had stopped developing at 5-6 weeks. I had been placed on levothyroxine at 4 weeks and 3 days. My TSH had gone from 0.07 in Oct to 6.13 in November (when I fell). I’m currently awaiting a rescan to confirm the inevitable.

I have been tested for thyroid antibodies which are negative so my endo has diagnosed me with postpartum thyroiditis but given the circumstances has agreed to treat me with levothyroxine. I am currently on 75mcg. This was prescribed before they knew I was pregnant. I immediately told them when I found out I was and they didn’t recommend increasing it.

I am beyond worried about what this means. In my head this missed miscarriage has occurred because of my high TSH but I know that no specialist will agree for definite that it caused it. I am assuming I will get my bloods taken again when I go in for surgical management of the mmc and DH and I have said that we are not going to ttc again until my TSH is below 2.5. I just can’t believe my luck.

Does anyone have any success stories of conceiving with postpartum thyroiditis/ subclinical hypothyroidism and all being well? If so what were your TSH levels on conception? What dosage were you put on during pregnancy?

Yours hopefully.

Hi op, I am so sorry to hear about your loss.

I was also on levothyroxine, had a mc, but then didn’t ttc until my tsh was under 2. It ideally should be as close to 1 as we can get it I was told. Two beautiful dc now!

I would recommend:

Pushing for a quick review (6 weeks from surgical management) so you can get titrated to correct level. I didn’t ttc until my tsh was something like 1.5

Getting very clear protocol from endo for what to do as soon as you get a positive test. In my endo I was told to take an extra 25mcg thyroxine as soon as I tested postive and then call into clinic to get appointment ASAP after that (I think 4-6 weeks later). As I’m sure you know thyroxine needs to be increased in pg to keep tsh low and protect baby.

Will be thinking of you and really sorry you are having to go through all this especially so close to Xmas

I think I was on 100/125mcg alternating every other day (so around 112 daily) when I got pg and went up to 175 mcg or thereabouts by end of pg, but can’t quite remember

I would join Thyroid UK HealthUnlocked it is full of lots of information and other members will be able to help you as well.

@Onceuponatimethen thanks for your response. Was it subclinical hypothyroidism that you were diagnosed with? Do you know what your TSH was when you miscarried? How long after your mc did your thyroid take to drop to around 1? X

@Hopingformyrainbow I think my tsh was around 4 before I got pg but am not 100% sure.

It was alleged sub clinical, but I am still taking thyroxine now years on as I feel better on it and I actually had symptoms I didn’t pick up at first (losing eyebrows a little, fatigue, low mood) so feel much better on thyroxine.

I’m not sure how long it took exactly but I had Mmc and surgical management in the April and then got pg again in the September. I was 35 but decided better to wait until tsh right. So I’m guessing it was low enough by the August? So maybe 4 months.

Very good idea to join a support group for hypo sufferers. I was on a thread on here and that really helped me.

Please reach out here for support on the mc too if you need it. I found it a hugely hard time and didn’t really start to recover mentally until I had had the surgical management

@Onceuponatimethen I am just so frustrated. I repetitively asked if I should hold off ttc until my thyroid was under control and I was told to continue. When I found out my TSH was 6 I thought right I’ll stop ttc until this is under control but by then it was too late. So now I feel like this additional heartache could have been completely avoided. I feel as though I have been pushed back months in this journey because of this. If I was going to get my meds regardless of pregnancy this could have been under control so much quicker. The thought of waiting 4 more months for this to stabilise is heart wrenching. If you don’t mind me asking how far on were you when you MC?

Oh @Hopingformyrainbow I’m so sorry. I had a very similar experience and felt very let down. I would really recommend ringing Tommy’s midwife support line. Their midwives are trained to support with baby loss and it really helped me. I wished I had rung sooner to be honest.

I was 12 weeks but baby had stopped growing properly by around 6 weeks apparently.

The thing to try to hold on to us that the stats show the vast majority of us who have a mc will have a healthy pg within the next few years. The MIST study which was a big study of mc showed that.

Are you managing to eat and sleep at least a bit? Do you have good RL support?

@Onceuponatimethen
The thought of having to wait years kills me. I am not sleeping well at all and I’m struggling to eat.

I’m also hopeful that because I will be dealing with this at 8 weeks rather than allowing it to get to 12 weeks that my body might recover quicker? Am I being naive?

I’m hopeful that because I fell relatively quickly even with the issues that this means that it will happen quickly once things are under control.

My husband is amazing and I’m seeing a psychologist but only once a month. I feel like I need medical help and reassurance not just counselling. I tried to speak to my endocrinologist yesterday but never got a phone call back.

@Hopingformyrainbow my heart really goes out to you and if it helps then I’m sending you a virtual un-mn hug

Mc is incredibly hard and I can identify so much with what you’ve posted. I know how incredibly difficult it is to do what I’m about to say, but try to be really kind to yourself right now. You are going through a huge physical and emotional experience and the most important thing is to get through this right now over the coming days and focus on activities that help you block out the pain even if just for an hour or so - wall to wall cheesy films on Netflix are often a good plan. Try to eat just a little every few hours and snatch sleep when you can.

I would call a helpline on Monday. This is what Tommy’s say:

“You can talk to a Tommy's midwife free of charge from 9-5 Monday to Friday on: 0800 0147 800 or email [email protected]. Our midwives are also trained in bereavement support and will be able to talk to you about what you're going through.“

When is your rescan booked?

I think if you feel you need professional mental health support at the moment, given the incredibly difficult experiences you’ve been through this year, you could also call gp on Monday as well as consultant’s secretary on Monday

@Onceuponatimethen - rescan is Monday. Surgery will probably be Tuesday.

I know, everyone says that but it’s so hard. If you don’t mind me asking did you test positive for the antibodies? I haven’t and I’m wondering if that will help get it under control quicker. I’m very early 30s and a very normal bmi should I be on something stronger than 75mcg? Just if you were on 100? Or was that just during pregnancy?

Did anyone tell you that your MC was due to your thyroid?

I think you are probably right that the tsh should come back to normal quicker the less far on in pg you were, but I have no medical knowledge so like you that’s just a hunch, but it makes total sense. Maybe call endo’s secretary on Monday and ask whether you can come in end of Jan for the first new bloods?

My two are filling this house with children’s noise right now. Statistically it is highly likely that ten years from now you will have the family you are hoping for yourself and might even be on here reassuring another woman who is in your position right now

Sorry x posted will reply to your last one now

I’m so sorry for your losses.

If medicated, your TSH should be below 1. I had an (American) book called something like “Your healthy pregnancy with thyroid disease”. I’m now entirely gluten free. Don’t even know if it helps but it makes me feel protective and I had my son since diagnosis.

First of all sorry for your loss

My children are adults now so this was a long time ago - 1990’s

I was diagnosed with postpartum thyroiditis at 5 months postpartum. I was put in thyroxine and monitored by an endocrinologist. At one year pp they stopped thyroxine and retested me. I was diagnosed with Hashi’s.

I got pregnant three years later. I was monitored by endo and regular blood tests. Adjusted thyroxine accordingly. Normalise pregnancy. I think the main thing you need to push for us increased monitoring and an endo referral.

Yes I did test positive for antibodies and again no medical knowledge at all but I would have thought it’s a very good sign you didn’t. Just remembered we got pg second cycle of trying for dd1 thinking about it (after over a year before the mc), so I’m thinking actually I must have been ok by end July, tried unsuccessfully Aug and got pg in Sept, so not actually that long really - 12 weeks for me at least. You will need a bit of time to recover physically and emotionally as well so that window of a few weeks might actually be a good thing.

How much thyroxine is very personal to individuals but if your tsh is not under 2 my endo told me that’s a sign you need more, which is why I would push to have endo appointment and bloods end Jan.

I seem to remember there’s a recommended gap between surgical management and first bloods because otherwise they don’t get a true measure.

No one ever told me my mc was due to thyroid but it’s a known factor and I used to be in a hypo support group and nearly all of us had had a mc before being properly replaced.

The key thing to remember is that once properly replaced that risk factor is sorted as much as it can be

My endo said once properly replaced in his view the risk almost entirely falls away