Postpartum Thyroiditis

[EvaNik]

Hi all! I have a baby girl who is 4.5months old. A couple of months ago I started to get classic hyper symptoms and got myself checked out (I’d seen them before in my sister who was hyper/Graves but is now in remission).

My thyroid levels were high and postpartum thyroiditis was suspected as the cause. Over the space of just a few weeks these dropped rapidly, and I’m now hypo (so they definitely think postpartum thyroiditis than Graves‘ disease like my sister).

Finally saw the endo a couple of days ago, and she told me I have hypo, very likely for the rest of my life. I’m sad and a bit confused - articles on the internet indicate an 80% chance that the hypo would be temporary (about a year) if caused by postpartum thyroiditis(?). Am glad most of the hyper symptoms have gone but scared by the prospect of the hypo symptoms. I’ve been put on levothyroxine indefinitely, but the endo reassured me that there’ll be no symptoms, or problems with future conceiving/pregnancy - if tablets are taken and I’m monitored.

So just wondering if anyone can tell me about their time with postpartum thyroiditis (namely hypo). Were symptoms truly managed with levo meds? Any issues trying to conceive or during pregnancy? And generally as this is all new territory for me - is there any lifestyle changes or supplements I can take to help? Am anxious but would love to hear any experiences with this.

Big thank you xxx

[shaws Administrator]

First, welcome to our forum and second I'm glad you have a lovely little girl.

Members who've had similar problems to you re hyper/hypo/post partum will respond when they read your post.

You may take to levo like a duck to water and have no problems at all. However you could do, so I shall give you some hints re testing etc.

All blood tests have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.

Levo should be taken when we awake with one full glass of water and wait an hour before eating. Food can interfere with the uptake of the hormones.

Blood tests should be every six weeks with a 25mcg increment of levo until your TSH is 1 or below. Many doctors and even Endos think that somewher in the range is fine. Not so.

Request B12, Vit D, iron, ferritin and folate as everything has to be optimal.

Always get a print-out of your results, with the ranges for your own records and post if you have a query and members will comment upon them.

[Hidden]

I had postpartum thyroid issues, though I wasn't aware of any hyper phase. I felt really well after the baby, and then after a while I was hypo and didn't feel well any more. It was diagnosed as post partum thyroiditis, and I was told it would get better on its own. He didn't offer treatment.

It did pass, eventually, though I was unwell for a good few months. I got pregnant again and the obstetrician was a little alarmed when I mentioned the thyroid issue - I just simply didn't know any better back then that good thyroid levels were crucial to the baby. All was well at that stage, my levels were fine during the pregnancy and all was well.

After baby two I was hypo again. I'd moved city by then and the new doctor tested thyroid levels - hypo - and my antibodies and said that it was permanent this time. After starting treatment my periods started again (I'd assumed they were absent due to breastfeeding but maybe not) and when we wanted to, I fell pregnant easily with my third child, continued to take my pills and all was well.

I was also a bit sad, but mostly relieved because I was so unwell when I was hypo and it was such a relief to know there was a cause for being so ill and a treatment for it. I have no experience with being hyper (except that if I had a hyper phase it would have been when I was feeling really great) so I can't comment on that!

You certainly need good thyroid levels for pregnancy so good monitoring will be important.

[EvaNik]

Thanks both for your responses, feel at this stage that any info is soo helpful. At least to ensure I’m getting the right info / treatment from docs and following proper guidance to stay ahead of the game. From what I’ve gleaned so far, knowledge is key when it comes to your thyroid!

Thanks too Sewin for sharing your experience. Can tell it’s been up and down for you, but again I see it’s always better to be ‘in the know’ to ensure you’re receiving the right treatment. I have heard of womens’ symptoms being put down to normal postpartum changes for months.. Also reassuring to know that you can go on to have relatively straightforward pregnancies and healthy babies at the end! And I better understand now why monitoring before, during and even after is important for your own wellbeing as well as baby’s.

Feeling much better about it all, more in an ‘acceptance’ position anyhoo! Xxx

[Nibz]

I had postpartum thyroiditis in both pregnancies was hyper and then hypo. I went on meds for the hypo stage for second pregnancy I was given a choice about whether I wanted to take them but after a year had thyrotoxicosis and ended up in A&E. I came off the medication then and have been off it for a year—my last tsh was 2.9. Worst thing I ever did was go on the meds—my tsh was 14 when they put me on. Mine was temporary not sure how they make a definite life time diagnosis what was your TSH when they put you on?

[EvaNik in reply to Nibz]

Oh gosh Nibz, what a nightmare for you!! It really does make you wonder how endos make the decision whether to put you on meds - it’s not been long since I’ve been diagnosed and I already feel a bit kept in the dark.

I don’t know my latest results, only my 3 previous blood results - in order:

Serum TSH level - 0.01mlU/L, 0.01, then 0.02.

Serum free T4 level - 62.3pmo/l (that was me hyper), 52.4 (still hyper), then 13.7 (in normal range but now going close to hypo levels).

This was all in a matter of weeks (leading up to just 2 weeks ago). As I said I don’t know what my latest results were that I had done last week, but wish I’d asked! I’d also v much like to know what they’ve seen in my clinical presentation to say for definite life-long - again wish I’d asked to aid my acceptance of it and reassure me that meds are the right way to go.

I’m just putting blind faith in them at this stage. That said, I’ve been doing a lot of research - have seen I should be taking selenium, vitamin d3, and having a gluten-free diet. My endo simply said ‘maintain a healthy lifestyle’... So not sure what to think!

Thanks for your response! xxx

[Nibz]

Also not sure about a tsh below one I was hyperthyroid with a tsh of 1.72—it was so bad I even had atrial fibrillation— I have been told an ideal tsh is 3! Levothyroxine is a not a medication to be played with— I was 43kg when I came off it, rising slowly since—now 48kg.

[Emma1234567]

Hi Eva,

Congratulations on your baby girl. Sorry to hear about your thyroid issues. I too had postpartum thyroiditis after the birth of my third child. My GP had prescribed me 100mcg levothyroxine but the endo told me to gradually come off it as the postpartum thyroiditis would go away. This I did and then had a blood test several months later and I was hypothyroid again. I believe that this is not uncommon for postpartum thyroiditis to sometimes develop into permanent hypothyroidism. I was then on levothyroxine for 8 years but never felt well in all that time. My GP gave me annual blood tests but only tested my TSH and FT4 level and told me that I was fine. Eventually after my health continued to decline, I was told I had ME. Happily this is all behind me now as I found a functional doctor who actually listened to me and tested me for many things, most important of which turned out to be my FT3 level and iron, B12 and vit D levels. I discovered that I don’t convert T4 to T3 very well and had low iron and vit D levels. I didn’t have ME after all, I was hypothyroid, despite taking levothyroxine. I’m now on different meds, multiple supplements and a strictly gluten free diet and I feel much better. I also met a different endo who agreed that I don’t convert T4 to T3 and that Levo is not the way to go for me. From my experience I would recommend the following:

1.) Find out if your hypothyroidism is hashimotos. If so, most people fare much better on a gluten free diet. I personally didn’t find out for 8 years and only found out because a member of this group checked my lab results and confirmed it

2.) Ask for your iron, ferritin, folate, vitamin B and vitamin D levels to be tested and always check the results yourself and the lab ranges. It’s a good idea to post them to this group also as the advice is invaluable. For example, your results might be low but still in the lab’s normal range so a GP or endo might ignore them but being optimal might be a crucial part of getting better.

I wish you well. It is possible to manage this condition and have healthy pregnancies.

[EvaNik in reply to Emma1234567]

Thanks so so much for this Emma. Really useful information for me to take away and ask!! I’m def getting a picture of how many diff variables there are - it’s not just a case of the thyroid functions levels = Levo. I’m back to see the endo in 6 months time (feels like ages away), but at least in that time I can speak to my GP and ask for further tests. That said, I asked my GP once about selenium (which my sister advised as helping with the thyroid) and she had no idea what that was... but as you said, forums like these can be invaluable in filling in the gaps.

I too am sorry about your experiences, I can’t imagine how upsetting and confusing these past few years have been for you. Thank goodness that at least you are now receiving the right treatment, and you were treated by someone who was able to get to the bottom of your experiences! Xxx