Hashimoto's Thyroiditis, anyone?

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Diagnosed 5 years ago after a couple of late miscarriages and lots of hassling of GPs. It's a weird one, flaring up every so often. Sometimes GP says I no longer need Levothyroxine, then when I have a flare-up it takes a month or so to get the GP appointments and blood tests sorted, by which time my neck is huge, I feel horrendous and have stacked on the weight.
I've recently been reading about the effects of gluten on Hashimoto's, as they reckon one AI disease can sometimes lead to another. I have to say, since cutting out gluten, my symptoms have all but vanished... I'm currently on 25mg Levothyroxine, and feel amazing. Fingers crossed it lasts!

I have hypothyroidism thanks to having a thyroidectomy 2 years ago aged 24... Currently 28 weeks pregnant with my first baby and my TSH shot up as soon as I conceived. Luckily my doctor reacted immediately by doubling my Euthyrox prescription to try and keep it under control, which worked initially, but I've just had to double it again as it took another upward spike in my last blood test and I've definitely been feeling the effects of draining fatigue.

Gluten free also didn't seem to have any effect on me, but getting my Vitamin D deficiency treated helped my energy levels immensely (before pregnancy).

For those of you upthread who are on naturally desiccated thyroid - are your experiences of it good? Were you on synthetic thyroid before and have you noticed any changes/improvements since making the switch? And also, are you taking porcine or bovine NDT? I've heard positive things about the natural source versus synthetic, but as a Muslim I would need to take bovine NDT and most of the drugs companies appear to prefer the porcine variety.

Butterfly - have you been referred to and monitored by an endocrinologist during your pregnancy.

An alternative to investigate is synthetic t3 - I take it alongside Levo and it helps me greatly.

OP your gp sounds terrible.

Namebot - recent experience of pregnancy with hypothyroidism has shown me that even when insisting on a referral with nice guidelines to hand, some trusts don't but do follow the monitoring and upping on bfp. Ish. Dr even phoned endo to check who said up by 25 and monitor. It does seem sporadic across the country.

That's terrible. My endocrine consultant was excellent during my recent pregnancy but I am aware that women have to inform themselves and insist on the care that they need.

Yes - I will just demand tests fortnightly now pretending it's anxiety.

Which sounds appalling written down but it was very hard to keep my tsh at the right level in my first pregnancy. There was an issue with the batch of thyroxine - I will have to insist they check levels as it was such a car crash I don't have anything to reference against that pregnancy. And it was successful as the gp at the time did test two weeks after raising and then upped it, tested again two weeks later etc.

Hi @Namebot - I haven't been seeing an endocrinologist specifically during pregnancy, no, but my OB/GYN has been fully aware of my thyroidectomy since the beginning and has been good in following up with regular blood tests and increasing my thyroxine dosage as necessary.

Sorry to hear of your experience @Ekphrasis - I'm actually in Dubai therefore I haven't experienced the NHS approach to monitoring/managing TSH during pregnancy, but I'm coming back to the UK next week to continue my pregnancy and to deliver there, so I'll definitely have to be hot on pushing my new midwives/doctors to continue paying close attention to my hypothyroidism. I'm going private so I suppose they'll have to accommodate my requests anyway.

I'm also booked in for placenta encapsulation after giving birth, as I've heard this is really beneficial in regulating TSH and reducing the likelihood of suffering postnatal thyroiditis. I'll definitely share my experience of it on this thread in a couple of months' time.

Hi, did you have a partial thyroidectomy?

If you're private you'll be fine but ongoing monitoring is crucial especially in the first couple of months and during the first year.

Good luck with the placental thing. I can't see how it will have a major effect as the endocrine system and autoimmune system are tough to beat but you never know.

Yes @Ekphrasis it was partial - still got a teeny tiny bit of my right lobe left. It was functioning quite well by about 3 months after the surgery, but pregnancy sent my levels through the roof again.

I've become pretty good at knowing my own body and when I feel my TSH is off, so I'll definitely always take care to follow up on checking the levels; as you say, it's particularly crucial during pregnancy and the first year or so after birth.

No idea if the placenta thing will actually work or not, but there are several studies showing that the hormones and nutrients in your own placenta do a great job at stabilising everything by ingesting it after birth. It will give me around 250 capsules so that's almost a year's supply - it's worth a try anyway!

Butterfly yes tried Levo but it just didnt work for me and I was very symptomatic even by the end on 175 mcgs. Not sure if its bovine or porcine its naturethyroid and its excellent I can work on this albeit part time it takes a while to get steady and I still have occasional flare ups of exhaustion but they are rare The only problem is I have to purchase over the internet and of course pay for it!

Ok butterfly, just keep getting regular monitoring. Please also be aware that post baby other things can need extra e.g. Vit d, b12 (esp if bf, you need more daily of both, as well as calcium and also iodine but not too much of the iodine) and ferritin.

teabagitis, who do you see, which endo? I need one who will look at symptoms.

Okite did you ever get to the bottom of your joint pain and heart palpitations? I have hashimotos and have the same thing right now. Have been symptom free, on Levothyroxine since April this year and last two months these symptoms have appeared x

Okite did you ever get to the bottom of your joint pain and heart palpitations? I have hashimotos and have the same thing right now. Have been symptom free, on Levothyroxine since April this year and last two months these symptoms have appeared x

Sort of! Palpitations seem to have been down to a combo of iron deficiency anaemia and pernicious (b12) anaemia. Both treated now and haven't had palpitations for ages.
Joint pains I think were menopause, I'm on HRT now and that's calmed down too.
I still think I have some kind of thyroid issue though, but I'm on annual monitoring of TSH levels and even when they went above range the doctors said they weren't high enough to treat. 😒

Could you be anaemic and/or perimenopausal?

PP with joint pain: this can be caused by being hypothyroid. Been looking into this as I'm hypo, on NDT, and having to continually monitor. One aspect of being suboptimal is that the puffiness that also causes carpal tunnel, oedema etc can also cause fluid retention in the joints leading to joint pain, often in knees and hips. Being hypo can also cause muscle weakness and stiffness, which in turn makes your joints less stable, leading to more risk of injury and inflammation. So if you're achy, get your levels checked (moral of a hard-learned story!)

When getting TFT bloods taken do ye skip medication dose that morning and take after getting bloods talen? I've read that there should be ideally 15-24 hours between last dose and getting bloods done. The last few times I've done this and my TSH was perfect but my dose was also changed so I'm not sure if it's due to dose increase or timing of bloods. What advice have others gotten about this?

Yes, take thyroxine after test.

Don't take anything with biotin in for a few days: a week before (a b vitamin, often used for hair and nails.) this can skew the results.

I aim to have test around 9 am for consistency.

You wouldn't be told this by a Gp but I had this advice from a British thyroid meeting many years ago, passed in from a local consultant.