Hypothyroid, coeliac/lactose intolerant, side effects of levothyroxine and pregnant

Hi everyone - I've been on 25mg of levothyroxine for a number of months (I'm quite small, 48kg) since last year being very poorly and having lost a lot of weight (down to 39kg) and subsequently diagnosed as coeliac and with thyroid antibodies of approx 200 and hypothyroidism. My TSH has been stable at about 3 and my FT4 has been about 10.5-11 and FT3 around 5 (but has got upto 5.9 and 5.7 in the past). Prior to becoming poorly a year ago my dose was 50mg and I became very poorly, coincidentally, as my dose was increased to 75mg (I was also given Wockhardt as a brand rather than the Mercury Pharma I had always been on). I was originally diagnosed at 22 years old and took low dose levothyroxine for 8 years but then my own body seemed to kick back in and I didn't take levothyroxine for many years, including during my pregnancy 4 years ago when I was 37 years old (my level did reach 3.4 in the third trimester but post pregnancy dropped to 2.5). I am concerned now though that I have literally just discovered I am pregnant, it's incredibly early days but my GP said (and I agree) that straight away we must increase my dose. My dose was upped from 25mg to 50mg daily, I take this at around 6.30am, well before food, and feel fine initially but begin to experience palpitations, mild trembling, chills, dry mouth, fatigue etc from mid morning, and this becomes progressively worse into the mid afternoon when it then starts to subside and I feel much better late afternoon onwards. I am also waking in the night and having incredibly mad dreams! My huge worry though is that my dose does need to be higher than 25mg per day (which I feel ok on), I have wondered whether I could split a 50mg dose into 25mg morning and 25mg evening (well away from food). Would anyone have any thoughts at all please? I am also, since last year, now lactose intolerant, and I'm limited on what foods I can now eat despite having had no history of any food issues until last year, and obviously I'm concerned that I am eating enough also given I'm now expecting, allbeit very early days. I mentioned to my GP that I may be struggling with the lactose in the levothyroxine but he said it's such a weenie amount he didn't think so. If anyone has any advice I'd be hugely grateful given I need to be upping my dose but am struggling with side effects. Thank you.

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  • Alessio Fasano, the expert on gluten, says there is no nutritional consequence from avoiding it. So long as you eat a wide range of foods, some other grains, brown rice, whatever - you'll be fine. Watch out for iron though, iron is added to a lot of main brands like Kellogg's cornflakes, and to bread, so once you cut out gluten you should watch to make sure you are getting enough iron, especially since you are pregnant.

    Lactose - the main problem in avoiding it is surely calcium - most people can still eat hard cheeses, which have plenty of calcium. Are you very lactose intolerant? It says on the Levo packet that it should not be taken if you are lactose intolerant, which you might point out to your doctor. It is true that some people can tolerate a small amount, but some can't, and since you have two auto immune diseases at least, and celiacs often have problems with lactose because of damage to the gut lining, you might well be in difficulties with tiny amounts.

    It's great you finally have a celiac diagnosis - it might take a while for your health to improve though. Calcium pills are available, obviously. Avoiding gluten and lactose shouldn't cause problems for the babe, but you may have vitamin deficiencies carried over from being celiac, especially fat soluble ones, and trace minerals, and you will find a lot of advice on putting that right on the celiac sites.

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    My instinct is that a GP doesn't know enough to manage thyroid in pregnancy, it's very specialist, let alone celiac and thyroid, and you should ask to be referred to an endocrinologist who specialises in this asap. But I would be interested to hear what others think who have gone through it.

  • Thank you for getting back to me Aspmama, it's a great help to hear your thoughts. My GP is very approachable and has known me for years but, I agree, I feel that I need to see a specialist, I feel so well when I'm clinically 'underactive' and I also do have thyroid antibodies now unfortunately, but obviously being pregnant I need to do something. I sent a reply to Clutter before I had chance to read your reply but as I mention in that reply all this has come around after being diagnosed with PTSD. I'm determined to tackle things as naturally as I can do, I agree I need supplements given my diet now and I eat quite healthily although have a sugar craving which is the next thing I must absolutely put an end to. It's all just such a worry being pregnant, and it's such early days that only my husband knows. Thank you for your reply I do appreciate your thoughts and they're a great help.

  • HelsS, Congratulations on your pregnancy.

    Lactose-free Levothyroxine can be prescribed in the UK. Your GP can write Lactose-free Levothyroxine on the prescription and leave your pharmacist to source it or GP can prescribe one of the lactose-free European brands in the link below. Alternatively your GP can prescribe liquid thyroxine which is expensive, more so than the lactose-free tablets.

    thyroiduk.org.uk/tuk/treatm...

    You can use your NHS prescription to order from the German companies sourced in the link if you are willing to pay yourself.

    In the meantime, if splitting your Levothyroxine dose x 2 helps you tolerate it better there's no reason why you shouldn't do it.

  • Thank you for getting back to me. I split my dose in two yesterday and took another 25mg last night, I still feel terrible though and haven't slept for more than a couple of hours and had wild dreams. I've got palpitations which I've had all night and mild trembling, a dry mouth, ringing in my ears etc. I'm beside myself really, I just feel there's more going on, I actually felt so well a week ago when I was only on 25mg per day (and prior to that when I'd been on only 25mg every other day a few weeks ago). I have had to up my dosage after my last blood test (a week before I knew I was pregnant) was TSH 3.5 (this had gone up from 3.0 6 weeks before but I also realised I had started a calcium/magnesium supplement and had sillily taken it after breakfast and within 3 hours of taking my levothyroxine). My last FT3 result 2-3 weeks ago was 4.7 and my FT4 was 9.7 (these had come down from 4.9 and 10.5). I know, looking at my results and particularly given I'm pregnant which is my huge concern at the moment, that I should increase my levothyroxine, but my body hates it, I can't function. Two years ago my dose was increased from 50mg to 75mg (reasonable for my body weight) and I went completely hyperthyroid and felt vile and it was reduced the minute it was realised. The symptoms were the same, insomnia, trembling, palpitations. I feel so well with my low thyroid! I'm slim, I don't feel fatigued, the only symptoms I sometimes have are constipation (I've been plagued with that my whole life and given up gluten and dairy helps hugely) and feeling the cold (but I have a BMI of below 18 and always have had and so I think that's a little understandable). Everything was unfortunately precipitated by the birth of my son 4 years ago, I had a very difficult labour which has left me with health problems and I developed birth trauma and a form of post-traumatic stress. It is a huge deal for me that I am actually pregnant again but given my thyroid I'm just so worried. My GP knows me well and is very approachable, my thought is that I urgently need to see an endocrinologist or an obstetric physician but because, on paper, my results look, I suppose, quite clear-cut and that I should be upping my dose of thyroxine, particularly now I'm pregnant (and actually should have done before I was pregnant) he feels I think that he is doing absolutely the right thing. He is really nice, we get on well and he takes extra time with me, but I believe there's more going on and upping my dose of thyroxine is making me poorly, and he also doesn't believe the lactose could possibly affect me because of the minuscule amount. I just don't know what to do but I'm so worried as I'm pregnant. Thank you.

  • Hels, I'd like to reassure you that there are probably only two things going on. One is that the lactose IS the problem and switching to lactose-free may resolve it. If your GP won't prescribe it you can use your prescription to buy from Aliud or Henning in the link I provided above.

    The second is that Levothyroxine may be causing the problem. Some people are intolerant, it's quite common, so don't let your doctor tell you 'Levothyroxine can't do that'. Liothyronine is an alternative thyroid replacement and there is a lactose-free make in the link I provided earlier.

    I'm absolutely unable to tolerate Levothyroxine on its own but Liothyronine calms the side effects and I do well on Levothyroxine and Liothyronine combination. Some people don't tolerate Levothyroxine at all.

  • Thank you for getting back to me again, I really appreciate your advice given your own experience of Levothyroxine. I'll call my GP again tomorrow. I've been doing more research and I wonder if I tended to feel well in the past as my FT3 level was quite good (5 upwards against an upper limit of 6.5 I think for the lab used). Someone had suggested there might be a pituitary or adrenal issue. I'm sure you're right regarding the Levothyroxine, thank you so much for the link and I'll hope my GP is open to the idea of prescribing me a lactose-free version (I can hopefully ask my gastroenterologist to confirm he thinks that would be sensible) and will mention Liothyronine, I'd never heard of it so that's really interesting. In the meantime trying to keep my stress and anxiety levels down, will be trying yoga and eating a good diet (although just read my bowl of porridge every morning might not be helping absorption of the Levo!), and fingers crossed. Thank you again.

  • Hels, until you are able to tolerate sufficient Levothyroxine your FT3 will be low.

    Liothyronine is UK T3.

    Porridge is a good breakfast. Just make sure you take your Levothyroxine one hour before or two hours after breakfast.

  • Thanks for getting back, I'll keep up my porridge intake but leave a good 2 hours after my Levothyroxine. The strange thing is that usually my FT3 level is quite good, at least 5 (and has been 5.7 and 5.9). I felt well on my tiny 25mg dose every other day, even though my FT4 was only hovering around 11 and my TSH usually between 3 and 4. I almost feel I have symptoms of over-medication and hyperthyroidism, and feel like I did when I was over-medicated a couple of years ago and my TSH went to 0.02 when my GP tried to increase my dose to 75mg. I'm not sure which part the foetus utilises in pregnancy but I'm presuming it's FT3, I'm not sure, but this is certainly my most 'optimal' measurement normally and I'm hoping when I have another blood test next week it will be over 5 again. I am still struggling though with taking 50mg in one day, be it in one go or split doses, and sure you are right in that there is lactose intolerance and Levo intolerance involvement. I just feel so cross as well that, given I've researched over the years, I didn't push more for my FT4 and TSH to be at a more optimal level before falling pregnant, and I know I need to increase my FT4 so will speak to my GP tomorrow (again!). Thank you.

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