Underactive thyroid - can you supplement thyroxine to help ease symptoms?

[Tailfeather]

I've had an underactive thyroid for about 15 years and my dose of thyroxine has crept up and up. I'm now on 250 mcg but I am still constantly exhausted, lethargic, slowly putting on more weight and struggle to lose it and am constantly constipated. Has anyone else experienced this? And we're you prescribed anything else to help? Thank you. X

I’m hypothyroid and have been for more than 20 years. I alternate between 175mg and 200mg each day. The only thing that had made a positive impact on how I feel is going totally gluten free.

Very few get relief on synthetic thyroid meds, ask your doc for natural meds or at least to add Cytomel.

Watching with interest as I too have all the same symptoms,

What is cytomel ?

Thank you @jenthehen. I'll try going gluten free to see if that helps.

@helacells. I have an appointment with my GP next week about how crap I am feeling and will definitely ask him about that. I hadn't heard of it before. Thanks.

I have to stick to it rigorously and it took about 6 weeks to noticevghe difference but the difference was huge. I have more energy, less brain fog, my skin has cleared of bumps (keratosis pilaris), I don’t feel bloated or gassy any more. Worth a try!!

OP hypothyroid patients notoriously have low vitamin/mineral levels too. Have you had them checked?

Specifically ferritin, folate, vitamin D and B12. Just slightly low levels of even one thing can make you feel exhausted.

Or you can be deficient in a lot of things and not feel any different.

But do get checked!

As well as trying a gluten free or AIP diet possibly? A lot get relief from that where nothing else has really done anything.

I second gluten free. I don't eat any grains and it has made a world of difference. Clearer head and better ability to cope. I am on 200 mcg thyroxine daily.

@jenthehen and @KavvLar Thank you SO much for the gluten recommendation. I have been gluten-free since you commented on this post - so about 5-6 weeks and I feel a million times better. I'm still getting a couple of bad headaches and feel tired - but nothing like the exhaustion I felt before and I feel less bloated and sluggish and my bowels are much happier!

And it's been pretty easy. I have mainly stayed away from gluten-free alternatives, but the couple of times I have treated myself have been delicious.

Over a longer period of time did it actually improve your hypothyroidism (ie did you reduce your mess etc) or does it just help manage your symptoms?

Since the menopause my need for thyroxine has reduced in line with lowered oestrogen so from 200 mcg in my 30s my thyroxine has gradually been reduced to 125 mcg.

I also feel much better gluten free.

That’s great news Tailfeather! I’m so glad it’s working for you too. It hasn’t lowered the meds I require but all of the symptoms seem to improve. I have had people comment to me that I’m “on a fad diet” or “following a trend” etc as I’m not diagnosed as coeliac but the improvements in my health from being GF are so noticeable I find it definitely worth it and am not at all tempted to go back to eating any products containing gluten. I have on a couple of occasions accidentally consumed some (strawberry and cream ice cream turned out to be strawberry cheesecake ice cream!) and I felt dreadful for a couple of days.

Yeah - I have to admit that I always thought 'gluten free' was a bit faddy - but thought it was worth a go. And it really was! I do find myself waffling and explaining myself though! 'Is that gluten free? I've recently gone gluten-free for heath reasons and it's really helped...blah blah'. Like they care!

Apparently it takes a while for the full effects to show so I am really hopeful that I will continue to feel better and better.

Thanks again for the recommendation.

Going gluten free helps most people to be honest, but yes defo with underactive thyroid. Coconut water is great as its helps maintain a healthy thyroid, so I've always found a difference when I drink a lot of this.
Yes also agree that typically we are low on other vitamins, as we are prone to anaemia, so b12, folate and iron supplements would be good, along with vit c to help absorb it
X

I'm on 200mg a day. And definitely have the same problems. Hair is falling out, dry skin, permanantly tired and grumpy. GP refuses to up any further as he says that's already a high dose. Will look in cutting out gluten as getting desperate.

@Jeffstar79 I was desperate when I originally posted and I gave up gluten on the back of this thread. I noticed changes within a week, but now, almost 6 weeks on, I feel SO much better. Others have commented too.

And it's not too difficult. I try to stick to potatoes and rice, but have had some gluten-free bread, gluten-free pasta and Pizza Express do a delicious gluten-free pizza.

I would definitely give it a go if I were you. You've nothing to lose.

Thanks Tailfeather. It's always nice to come across others in the same boat; my GP just seems to think I'm making a fuss. I'm late 30's and in ten years have never been on a dose below 175mg yet blood results are always borderline underactive. I don't expect a cure I'd just like to be slightly less symptomatic - and have some hair! I'll give it a go for a few months - it can't make it worse...

I’m on 175 mcg thyroxine and daily Vitamin D ( prescribed by GP).

It’s odd that I have low VIt D levels as I have outdoor hobbies. It might be because I don’t eat bread .

I’m gluten free ( non coeliac gluten intolerant ). I dont eat many special GF products , just naturally Gf things like meat fish veg and Gf grains .

Op, do you know what your blood results look like? Get a record of the actual results from your gp. Ideally you should know what your t3 is but they rarely do this test. You can have a private test if you can pay.

Being gf might help you feel better - some people do say that - but it's not a substitute for being treated properly. You need to check if you're being treated properly, on the right dose of the right meds.

Jeffstar79 whether or not you're taking 'a high dose' is irrelevant; as above you need to be on the correct amount of the correct meds. I'd advise you to get your actual results too, and to get your t3 tested. Your symptoms should be alleviated on optimal meds.

If you're still symptomatic after being on thyroxine for months/years and/or if your dose isn't being monitored do have a look at the Thyroid UK forum: healthunlocked.com/thyroiduk

@thefirstmrsdewinter I don't know the actual results, but could find out. I just have my bloods taken every 3 months and then my GP calls and tells me whether to up or lower my meds. I shall look into this. Should I see an endocrinologist?

@Jeffstar79 I'm late 30s too. Have has an underactive thyroid for about 25 years now, but the past year I was feeling dreadful.

Seeing an endo is not always a solution and I wouldn't go down that road just yet. Are your meds being adjusted every 3mos? Once you're stable usually the blood test is done once, maybe twice a year so this level of monitoring - esp after 15yrs - is unusual.

Deffo get your test results. I'm not saying your gp is not doing the right thing, but if you see the numbers it might tell you more about what's going on. If you're very symptomatic on a high dose and no solutions are being offered you might want to dig a little deeper yourself. TUK is a really good place to start and there are a lot of clued-up people there.

You need to make getting fit your no. 1 priority! I cannot emphasise this enough but it will kickstart your thyroid and oxygenate your whole body/ brain.

So join a gym and attend lots of classes, swim and go for long walks.

I agree with all the suggestions so far and change your diet too so lot of oily fish ( tinned is great), crushed flaxseed, pumpkin seeds, Marmite or equivalent, seaweed, miso, fruit and veg.

Cut out stodge and all factory produced junk food and replace with prunes.

I guarantee your energy, bowels, mood will be transformed if you follow this advice.

Report back please!

Thanks ladies. It's really great to come across others that are having thyroid problems despite being on thyroxine. I know my GP is ridiculous but apparently doesn't have any other patients that are on a dose over 75mg so see's me as an oddity. I've a blood test due before I get my next repeat and will push to be referred back to an endo if they are still poor or at least ask they to consider upping my dosage .

With respect to @Prettyvase this might work if you have borderline symptoms; I run and go to the gym several times a week and still have the metabolism of a slug.

Jeffstar79 that's absolutely bonkers. The whole point of the test is to determine how much levo you need. If he's just going to give everyone no more than 75mcg what use is that?? As far as I'm aware 100-150 is a very average dose, so what are all the people who need 150 doing when your gp has them on 75? I'm speechless.

Prettyvase yes, sorry, while a good diet and exercise are always helpful this will not 'kickstart your thyroid' if what you need is medicine.

Sorry non believers!

My underactive thyroid was so bad I couldn't even walk to a shop even though I was parked outside it and every step I took felt like walking in treacle.

My excellent NHS endocrinologist said she had never seen a worse case than me.

Once I got a tiny bit of energy back I researched everything to do with low thyroidism and have done everything I can to improve my health and fitness.

I am in my 50s now and am living proof that a diet and exercise will help you enormously although it won't cure you.

So you're on meds then? Or are you doing without and eating seaweed instead? Perhaps you're from a part of the world where uat is caused by iodine deficiency. Mine is autoimmune so all the iodine in the world will not help. I too am 'living proof' in my 50s that diet and exercise are great, and the ability to do those things comes from optimal treatment.

Best not to make assumptions about anyone's route to health. For every person advocating iodine/LDN/vitamin supplements/magnets/spirituality/acupuncture/prunes etc as the irrefutable cure-all, there are a dozen people who have tried it and have circled back to sorting their meds as a priority. People used to die from untreated uat.