Long story short(ish)- in October I had a baby, in December I was diagnosed with post partum thyroiditis with an over active thyroid(tsh <0.01) then levelled out a few weeks later before going underactive (tsh 11) around March time. My symptoms came as the results went out of range so even though they wasn’t all typical symptoms they were definitely because of my thyroid. My t3 and t4 were out of range too. I started throxine and my symptoms became slightly more bearable (for a few months it was horrific before thyroxine). My levels have been in range since around tsh 1-2 and antibodies still raised, and I have still have debilitating symptoms. My drs keep saying it’s not my thyroid but everything else has been checked and is normal? My symptoms are:Feeling intensely weak Feeing disorientatedVery dizzyMy body feels like it isn’t processing info properly I.e when I am in shops the lights make me feel extremely wobbly and weirdFatigue Tingling hands and feetFeeling like a sudden flush of hormones come over me Like my brain and eyes are disconnectedGritty, burning, sore, dry eyes (I do also get a throbbing palpitating thyroid) These are a majority of the symptoms, the most debilitating anyway. What does this sound like it could be? I don’t know if something was triggered at the time of the thyroiditis or if it still symptoms of the thyroiditis? Thank you,Courtney
post partum thyroiditis : Long story short(ish... - Thyroid UK
post partum thyroiditis
Do you have a copy of your most recent thyroid blood tests? Have they carried on testing FT4 and FT3? Because once you’re on levothyroxine, TSH is much less helpful for gauging whether you’re on the right dosage. I wouldn’t be surprised if you were a little undermedicated.
If you have results to share we can have a look and see what’s going on with those.
But the other thing to know is that when you’re hypothyroid and not on sufficient replacement, it affects gut absorption of vitamins and minerals.
So you might find you have really low Vitamin B12 or low folate or low Vit D or low ferritin etc. Or all of the above! A deficiency in just one of those would make you feel awful.
There could be more than one thing going on here so it’s going to be a question of ruling things out.
Thanks for the reply Jazzw.
I have literally had everything tested,adrenals, mri’s, other immune system blood tests, and all the ‘normal’ blood tests. Everything is normal except my vit d and Ferratin is normally low. I have supplemented to get them right through range but my symptoms persist?
My most recent thyroid results were TSH - 2.2 (I have upped my thyroxine since then to 75mg from 50mcg, it’s been about 2 months on this level now)T4 - 15.4(The tests a few months before we’re TSH 1.1 T4 -17.8) I haven’t had my t3 done for a while but that was 5.1 [3.1-6.8] when I last had it checked
serum ferratin level - 35.1 [20-130]
Serum Folate - 4.4 [2.0-18.7]Vit D - 61B12 509 [197-771]
I have been taking liquid iron and vit d spray since these tests, nothing is helping. I have had higher levels over the years and still then I was feeling very unwell.
Thank you! Courtney
It’s miserable feeling so under the weather all of the time isn’t it? Sending a big hug x
I have a feeling you aren’t yet on enough levothyroxine. 75mcg is not a high dose at all. If it’s been a couple of months then it’s time to have another blood test to see what your thyroid hormone levels are looking like. As I said before, TSH isn’t all that helpful (though many doctors are convinced it’s all they need to know—very frustrating!). Ideally, you’ll need an FT3 and FT4 test to go with it.
You’ve probably got a bit of a catch 22 situation going on—being undermedicated for hypothyroidism causes low gut absorption so you won’t be absorbing as much of that liquid iron as you need and because you don’t have enough iron on board, your conversation of T4 to T3 is likely to be impaired. And it’s having good levels of active thyroid hormone (T3) that makes you feel better.
There are studies that seem to suggest that taking iron every other day is better than taking it every day, so that might be worth a go. Plus taking Vitamin C also increases the amount of iron you absorb.
Your folate is very low—it would be a good idea to get a folate supplement (folate, not folic acid—they aren’t the same thing) to bring that up a bit.
thank you so much, I also didn’t even realise my folate was low- very helpful thank you for all your help!😊 x
Iron should be taen 4 hours away from Levo.
Levo should be taken on its own, on an empty stomach with water and 1 hour away from food or caffeine containing drinks.
50mcgs is just a starter dose. The aim of treatment is to test every 6-8 weeks, increasing each time until TSH is at or under 1.
Your folate is very low. Would recommend a good B complex to keep all the B's in balance. This one is reasonably priced and contains all you need. hempoutlet.co.uk/vitablosso...
ferritin is very slow to improve, think many months. Focus on an iron rich diet - chicken livers, pate, red meat.
When you get the next blood test, book it for 9am or as close as possible as TSH is highest then. Do it fasting and take Levo that day AFTER the test. Post results here for people to comment.
Welcome to the group. If you could fill in your profile - click your image icon top right of screen - it helps people know your thyroid journey to help you better.
So doctors get very little training in how to help us feel well. They focus on your TSH as aooposed to your thyroid hormones - FT4 & FT3. They are scared to give us too much hormone so instead cautiously undermedicate us. This is where patient groups like this come in, so you're in the right place. Have a look around and learn a little to get up confidence in talking to your GP about your condition.
There's likely a few things causing you issues. Most people feel well with a TSH at or just under 1. You also need to check FT4 and FT3 levels which the NHS rarely do. People here pay for private blood tests to get the results they need to help them get well. See link with private companies and discount codes. thyroiduk.org/help-and-supp...
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Low vitamin levels on their own will cause you symptoms.
Antibodies will fluctuate naturally and very gradually over many many years diminish. With positive antibodies it means your condition is autoimmune and called Hashimoto's. Many people with Hashi's benefit from a gluten free diet. A smaller percentage will also need to remove dairy from their diet. Soy isn't good generally for hypo people.
You are legally entitled to a printed copy of your blood results. Ask at GP reception. In England there is also the NHS app and some surgeries can give you access to blood results on that if you ask for permission.
Get copy of blood results and post here on a separate post.
Get GP or pay for private tests for ferritin, folate, B12 & D3.
Trial gluten/dairy free diet.
thank you Jaydee1507 and Jazzw for your replies, I really appreciate it. I think I will get the private bloods ordered and go from there then . Thank you again 😊
Welcome to our forum and congratulations on the birth of your baby. Sorry to hear you are having thyroid troubles at a time when you should be enjoying new motherhood.
When pregnant the body has complex mechanisms to protect the baby and immune changes are made in connection. This is one of the reasons many women ‘blossom’ when pregnant. However, after giving birth if there were previous unknown Hashi tendencies, as hormones try to normalise more immune changes can trigger full blown Hashi attacks.
Hashi influences hormones aside from thyroid because thyroid hormones are so intricately connected through axes and feedback loops with our sex hormones. Also oestrogen is a big influencer of the immune system and its connections are how the immune system adapts to retain the foetus. Sometimes postpartum thyroiditis will reverse itself but if your antibodies are remaining elevated, it would be prudent to assume the Hashi condition is progressive.
TSH stimulates to encourage more thyroid hormone production when levels are low but once we medicate replacement thyroid hormones it can change pituitary-thyroid signalling meaning secretion of TSH decreases so demands less thyroid hormone to be produced. This is why we can not ’top-up’ thyroid hormone but have to ‘replace’. The reduction of this thyroid gland activity will often lessen Hashi attacks and its good it has been identified because lots of poor women’s symptoms (eg exhaustion and low mood) are attributed to ‘post baby blues'.
One of the best resources for Hashi and (post)pregnancy is a website called HypothyroidMom created by Dana Trentini who suffered herself .. hypothyroidmom.com/hypothyr... There is also a wonderful book called ‘Your Healthy Pregnancy With Thyroid Disease’ written by Dana and also Mary Shomon (another Hashi sufferer) that also covers the period following giving birth.
There is research showing thyroid antibodies to cross the placenta when baby is in utero but mixed reviews regarding thyroid antibodies crossing into baby through breast milk. Their consensus is to aim in reducing thyroid antibodies as in functional medicine, by adopting a gluten free diet, optimising nutrients and especially those known for their anti inflammatory properties such as Vit D, selenium, fish oils, etc.
This helps calm an over active immune response and reduces the risk of further self-attacks on thyroid peroxidase which is an enzyme found in the thyroid gland (TPO), & a key protein called thyroglobulin (TG). It is these self-attacks that will keep thyroid antibodies TPOAb & TGAb raised. Another good book that concentrates on the ramifications of Hashi is The Root Cause by Isabella Wentz. She doesn't concentrate on pregnancy (although is a Mum herself) but the whole enormous topic of Hashi and auto immune conditions.
When pregnant and giving birth the adrenal glands go through a lot of stress which will be further compounded by your Hashi attacks. Healthy living and rest (if thats possible with a new born baby) will help calm adrenals as it sounds as if you have excess adrenaline release which can happen when cortisol runs low.
hi radd, sorry to ask a question not related to the original question but might be useful to know - so if one has thyroid antibodies while pregnant or breastfeeding and they pass to baby does this mean baby could develop hashi or thyroid issues later in life? I also developed post partum thyroiditis after my first, it was well controlled with meds but no hashi diagnosis until two years after my second was born (when I started to feel dreadful), so perhaps I had antibodies while pregnant with/ feeding my second? Not that I really want anything else to worry about 😆 thank you!
Hi Courtney, I really sympathise it’s incredibly looking after baby /kids while suffering with hashimotos 😔 so challenging. I’ve gone gluten free and eating v healthily and taking vitamins etc, but don’t feel better, think perhaps it’s partly perimenopause kicking in. 😬 I’ve become very sensitive to lights, noise, smells and my environment too. I really hope things get better for you soon 🤗
Not necessarily because it isn't just the amount of antibodies a person has but how their body deals/copes with them. Some people live well with elevated antibodies whilst another might only have a few but a long slow intolerance (eg gluten, chemicals, etc), an infection (eg h.pylori) or a catastrophic event (eg car crash or divorce) that sets the immune system on its destructive journey. Some think low grade inflammation markers are a better indication of (impending) autoimmunity and its (likely) severity. I really wouldn't worry about having thyroid antibodies throughout your pregnancy and after if you and your son were well. I'm sure I must have.
Because thyroid autoimmune conditions don’t require immune suppressants as some other autoimmunity demands, it is deemed unimportant and research into the implications of thyroid antibodies in pregnancy is limited. There is quite of lot of papers claiming high antibody levels can cause miscarriage which is quite believable but equally unless they measure every women for antibody levels it is difficult to make a true hypothesis.
And this paper I haven't read properly but I notice it references studies showing TPOAb's to cross the placenta but thought the same immune system naturally put in place to protect the foetus from being aborted as a foreign entity, protects against thyroid antibodies . The exact opposite! sciencedirect.com/science/a...
Its a long time since I visited this and I've lost my references 🙄, but now you have some to go exploring yourself. 😊
This paper shows TRAB’s in the tummy of infant mice fed with breast milk from mummy mice with Graves ncbi.nlm.nih.gov/pmc/articl...
thanks so much radd, that’s really interesting, I’ll read your reply again and the links, my slow brain hasn’t processed it all yet! Auto immune stuff is such a tricky beast isn’t it 😬
Hope you’re keeping well
hello! So sorry to hear how hard it’s been for you too, it really is tough 🤯 I feel I have tried most things like gluten free, healthy etc but I’m still so debilitated and nothing improves. Did the sensitivity to all these things start as the thyroid went wrong? Have you found anything that helps? I find it hard going anywhere as I just feel so drunk like in shop lights!? hope your symptoms start easing too 🙏
hi Courtney, I’m so sorry you’re so debilitated, it’s incredibly hard when you’re a mum with 24 hour demands on you 😔 so you’re little one is 3 now? My youngest is too, and my symptoms really got worse when I stopped breastfeeding about 2 years ago, I couldn’t sleep and felt anxious, a bit better now and I’m pretty sure my body plunged into perimenopause (I’m 44) which you should be much too young for. Like you I’ve tried most things, I think changes take time, months, - whether it’s changing diet/ going gluten free/ taking vitamins / changing medical doses. When was your last full blood test? Worth having everything done, especially look at TSH, T4, T3, and thyroid antibodies plus ferritin, iron, B12, folate, vitamin D - others here will recommend, they are the experts!
Did you say your folate was low? A quick google showed symptoms like muscle weakness, fatigue, vision disturbances and pins and needles, depression and confusion …
If you’re gluten free you might be missing out on some folate you would have normally had in fortified foods, here’s some examples of what it’s in…
‘Folate is a naturally occurring form of vitamin B9, which people get from their food. Dark leafy greens, beef liver, and oranges are all good sources of folate. People can also get another form of B9, folic acid, from fortified foods. Some common examples include cereals, breads, and pasta’
I’ve read time and time again that gluten free helps a lot of people with hashis but I haven’t felt any better (although I think my antibodies are now lower)
I have a gut imbalance called SIBO (small intestinal bacterial overgrowth) which means I don’t absorb food well, so no matter how healthily I eat I’m not getting all the benefits. Do you have any gut symptoms?
How’s your sleep? Are you getting enough? Tricky with a young one! Lack of sleep can affect my vision and strength levels
Have you ever had your thyroid scanned to check for damage?
Definitely get all your bloods redone if you don’t have recent results and persist with the doctor / specialist until you get some answers. It’s just so tiring I know but you will get there 🤗 please let us know how you get on, hope things improve soon x
PS also try and get rest, fresh air and gentle exercise, time to yourself, meditation (hard with kids but call in help as much as poss), and keep stress low, when I feel stressed I can start to feel quite dizzy … time in nature is very soothing too and no horrible bright lights, supermarkets freak me out too! 😆
Congratulations on the birth of your baby…. I am sorry you are suffering.
Just to add to the excellent advice above, what brand of levo are you on? I had similar weird neurological symptoms on Teva which resolved as soon as I changed. I am convinced it was due to the mannitol in it.
I would definitely do a full private blood check, including vitamins and T4/T3 and post them on here for comments.
Hi Mollyfan, thanks so much for the reply.
I think I have tried a different brand before, can’t remember what the brand was,it wasn’t requested it just worked out that way when my dose was changing. I have tried liquid thyroxine though and it didn’t help, what brand you recommend giving a try or are all brands except Teva mannitol free?
Thanks again! Courtney
Hi Courtney, so sorry to hear you’re feeling so rubbish at the minute. I am new on this forum too and am still learning! I was diagnosed hypothyroid after my first child was born in 2011. I don’t know if it’s worth trying, but I used to feel very strange in the mornings - slightly similar to some of the symptoms you mention - such as feeling disorientated, dizzy and your brain being disconnected. I did some research and switched to taking my Levothyroxine at night instead of the morning and it helped straight away. Now I always take it last thing at night and make sure I don’t have any products containing dairy for at least half an hour before. If you haven’t tried this, it might be worth giving it a go? Hope you start to feel better soon.
Hi DaisyTed, thanks so much for the reply. Sorry to hear you have experienced similar things in the past, it’s really tough! I have tried a lot of things but this is one thing I haven’t tried, I am definitely going to give it a go!
Thanks again! Courtney 😊
No probs, I don’t know why they always say to take it in the morning as evidence shows it’s just as effective at night - ncbi.nlm.nih.gov/pmc/articl...
Really hope it helps! 🤞
Wow , your symptoms are so similar to mine.
Over the years (11. +)I’ve not got any help tbh, left to get on with it and it’s debilitating, a massive affect on life.
I’ve had so many tests, scans etc. Firstly my adrenal levels were dangerously low, later found atrophied (half of) thyroid gland (not via surgery), micro pituitary adenoma (told not a concern). Spinal issues.
My hormone bloods are generally normal but it does swell and feel uncomfortable at times. Dr’s aren’t interested.
Folate low so take ongoing..made no difference to anything.
Hello! Oh no I’m so sorry to hear this. Gp’s are extremely unhelpful, it’s a lonely confusing situation to have these symptoms and not know what to do to help yourself.
Have you ever found anything helps? I sometimes question if it’s something else but always come back to my thyroid. What dose of thyroxine are you on?
Take care, Courtney x
I should add I mean October 2019!