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Levothyroxine - still feeling exhausted

20 replies

FooFightersFan · 14/02/2019 10:13

I've been prescribed Levothyroxine by my GP and have taken it for about a year.
For the past few weeks I've been feeling incredibly tired and achey and completely unmotivated to do just normal day to day things.
I was filling up my pill box for the week and randomly re-read the pamphlet inside the Levothyroxine box.
It states that I'm supposed to take them 'first thing' with water, 30 mins before eating.
I'd completely forgotten about that and have been taking them at breakfast with my morning cuppa.
If anyone is also in Levothyroxine, have you experienced lethargy from taking your meds 'incorrectly'?
Obviously I'll start taking them properly from tomorrow, but I'm hoping for some reassurance that it's just the timing of my drug taking which is affecting my energy.

OP posts:
jinglewithbellson · 14/02/2019 10:23

Been on it for 5 years nearly now after having my thyroid removed after being over active due to Graves' disease.

I've the years I've learnt to balance it more myself but not too much at a time.
It's also hard sometimes to decide whether your feeling low in general due to the time of year (I know I do)and lack of vit d and calcium/magnesium.

I self adjust recently by only a small amount up every other day and I feel so much better but after 5 years I know my body and triggers.

Stress can really play around with levels and anxiety also plays a part.

If your still really unsure if go for routine bloods anyway just to see.

Just for reference I take mine in the morning with my cup of tea and don't have a problem. I'd say it's more if your other mineral and vitamin levels are low will be what is making a difference op

jinglewithbellson · 14/02/2019 10:23

Been on it for 5 years nearly now after having my thyroid removed after being over active due to Graves' disease.

I've the years I've learnt to balance it more myself but not too much at a time.
It's also hard sometimes to decide whether your feeling low in general due to the time of year (I know I do)and lack of vit d and calcium/magnesium.

I self adjust recently by only a small amount up every other day and I feel so much better but after 5 years I know my body and triggers.

Stress can really play around with levels and anxiety also plays a part.

If your still really unsure if go for routine bloods anyway just to see.

Just for reference I take mine in the morning with my cup of tea and don't have a problem. I'd say it's more if your other mineral and vitamin levels are low will be what is making a difference op

FooFightersFan · 14/02/2019 10:49

Thanks Jingles. It could be a bit of everything, you're right. I do take magnesium supplements, and walk the dog everyday. But am feeling a but overwhelmed too at the moment.
Thanks for answering

OP posts:
calabalamuc · 14/02/2019 10:51

I was away recently with friends and having forgotten to take my levotrhyroxine when I got up, took it with my breakfast and my friend said to me: you do realise there is no point in taking it if you take it with coffee? She said coffee prevents it being absorbed properly. I do know this really. Normally at home I have my tablets in the bathroom and take one before I get in the shower and by the time I am glugging coffee, a good 20 mins has passed. It would be worth a trying changing your tablet habits and seeing if you feel perkier.

ScrambledSmegs · 14/02/2019 10:58

The 'first thing with water' thing was something I struggled with too. I've now adjusted to it, and take it with a full glass of water which seems to stop me wanting a cup of tea straight away. Then I leave it for between half an hour to an hour before eating. Not sure why but closer to an hour works better for me. I do skip breakfast on occasion too, but that's only when I'm not exercising.

FetchezLaVache · 14/02/2019 10:59

I take it religiously at least half an hour before my cup of tea, but I'm still pretty knackered. What has helped more than anything is vit d (the doctor diagnosed a deficiency so I get them on prescription and therefore free) - now I find as long as I get a decent amount of sleep on the night before, I can pretty much get through the day without having to nap.

MsMightyTitanAndHerTroubadours · 14/02/2019 11:06

I take mine at bedtime, I just cannot do pills in the morning, I do not have a regular enough routine and end up forgetting.

Also read somewhere that as everything slows down for the night your body has longer to get to the drugs, and they are metabolised better. But whether that is true or just internet nonsense I couldn't say, but it's bedtime with water for me.

FooFightersFan · 14/02/2019 11:13

Thank you all for your replies.
I did used to keep the pill box (I have one of those 'old people' days of the week boxes) in my bedroom. I think I'll put it in the bathroom now to prompt me when I first get up. (No small kids in my house, so I'm being safe).
Until then, I'm just going to flop about and see if I can get the teenage DSs to fuss over me Grin (fat chance).

OP posts:
Aaaahfuck · 14/02/2019 11:13

I take it too. What where your tsh and t4 before you started taking it? Have you had a re test since? As they go is supposed to check its is working. So what were the levels then? I also have a vitamin D deficiency and anemia both of which makes you tired so it could be those things in you. I think after this long you would expect the meds to have a bit of an impact so its worth asking for more tests.

minipie · 14/02/2019 11:15

Interesting. I take mine at bedtime, it used to be with peppermint tea but recently I switched to normal tea. I have been feeling more tired and it might be related. I’ll try switching back.

Also need to get some vit D!

NeurotrashWarrior · 14/02/2019 12:15

Hi,

I've been on thyroxine since I was 21, now in my 40s.

If you've only been on it a year it's very possible that your levels need testing and you may need an adjustment. Thyroids can deteriorate slowly. Remember you can adjust slightly by a 25 tablet on alternate days if needed - always through Gp. Ask Gp to help you maximise your dose to around tsh 1 or a bit lower and see how you feel after a few months.

They key thing with taking it is consistency. Taking at night on an empty stomach was found to produce better levels but this was due to timing with food and routine. I always forget so I have to do morning but with kids and chaos and needing to eat as soon as I can I do generally have it near my cup of tea or with Blush BUT I'm very euthyroid right now on a stable dose, tsh about 0.3. In practise, it's having a regular routine over at least 6 weeks.

Caffeine, milk, lots of fibre, calcium and iron tablets, indigestion medicine can interfere with absorption - you do really need to be more mindful of the medications and vitamins. In fact, taking regular beta blockers had more of an impact for me and I had to take 12.5 extra.

You can take with orange juice or ribena.

If you're going to make any changes to your routine, do so for around 4 weeks before getting any tests, but just make sure it's sustainable.

How much are you on? What was last blood test result? Always keep a record of these and nite how you feel. Get your tests done at the same time of day, morning is best, and take your thyroxine after the test as it can peak in the blood a few hours after taking.

Low Vit d, iron (ferritin), b12 can cause similar symptoms so it's worth keeping an eye on these. Iron and vit d can sometimes also be low if you've been hypothyroid, the iron due to how thyroid hormones affect iron metabolism. You need selenium, iron and iodine to help metabolise the t4 to t3. (Iodine is less important if you're on thyroxine but still good to make sure you're getting it.) t3 is the hormone your body actually uses for energy. T4 (thyroxine) is a pro hormone.

I've gleaned all this over the years from the British thyroid foundation, experience and a relative who researches in the area.

NeurotrashWarrior · 14/02/2019 12:18

The reason for a routine you can stick to before any tests is because the half life is about 7-10 days. So it technically takes around 6-12 weeks for thyroxine changes to fully stabilise in your blood. Which is why they wait between tests.

Actual tsh can change quickly in response to pregnancy. There's a specific protocol in pregnancy, detailed on the British thyroid foundation website.

FooFightersFan · 14/02/2019 14:28

Wow! Neurotrash that is a lot of very useful information. It would seem that as well as being slack about the timing of my meds, I'm also quite ignorant of my hormone levels.
I was put on thyroxine because I was tired all the time and my GP sent me for blood tests. Although my thyroxine levels were within the realms of 'normal' my TSH was abnormally high (I think Hmm).
I did have another blood test around Christmas, but I've not checked the results. I foolishly guessed that if I needed an adjustment to my meds, the GP would advise. I realise now that's pretty naive of me. I'll give the surgery a call today..

I'm on 75mg per day currently.

OP posts:
2019Dancerz · 14/02/2019 14:38

I take mine with breakfast, always have - what I’m not clear on is if I switch to say half an hour before eating (I couldn’t do an hour and still get to work) will that lead to an increase in my blood test results which would result in my GP reducing my medication anyway? So, I’m on 175 if I took it differently so it absorbed better, would I get loved to a lower dosage because my bloods have altered? If so I can’t see the advantage really.

user1andonly · 14/02/2019 14:58

I put my daily dose in a small container (actually a spare lid from a water bottle) on my bedside table with a bottle of water as I almost always wake at least once a night for the loo so I take it then.

I need my cup of tea first thing in the morning and was finding it a total pain to wait half an hour.

75mg isn't a big dose - mine gradually increased to 125mg. Been at that for months now and am just finally starting to lose a bit of weight despite not drastically changing my diet - I eat healthily but have found it so hard to shift anything.

Iwanttobeanonymous · 14/02/2019 15:07

I read on an American forum that there should also be a gap between taking thyroxine and taking vitamin D. I hadn't heard this before so I asked a friend who is a pharmacist and she said she had never heard if it and that she (like me) took them both at the same time!!

NeurotrashWarrior · 14/02/2019 16:23

@2019Dancerz If you're euthyroid on that dose there isn't much point; consistency is the key.

Obviously taking it 30 mins before breakfast with water is the best way, and avoiding iron tablets etc for a few hours (read the leaflet) but you need to do what's sustainable. I don't have enough time to do that in the morning. After this long taking it I find I forget at night.

When kids came along I found I had to use a weekly pill box or I forgot, and I ran in to problems.

Yes 75 isn't a huge amount. I'm on 125. I'd get a test and check. Praps don't make huge changes to your regime till after the test - it's up to you. If you want to change it now I'd leave it a few weeks before getting a test to get an accurate picture.

Also remember it can sometimes take 3-6 months for some symptoms to properly settle eg weight or muscle strength. Other times you may notice in a few weeks.

NeurotrashWarrior · 14/02/2019 16:26

Info on weight loss

www.btf-thyroid.org/information/articles/280-thyroid-and-weight-the-science

Not heard the vitamin d thing before either! Worth reading the levothyroxine leaflet when you take any new medication; I discovered a couple of things in the past were mentioned on the levo sheet as a possible interaction but not on the other medication sheet.

NeurotrashWarrior · 14/02/2019 16:29

I've actually never had an issue with weight other than a little ankle swelling. In fact when very hypo I have lost weight before as I loose my appetite and I think you can loose muscle over a long period.

FooFightersFan · 14/02/2019 19:17

This has been a very informative thread.
I called the surgery this afternoon and my last blood test was actually in the summer Blush but was all ok. Even so, I'm going to see the GP again and get another blood test done, if I can.
And starting tomorrow morning I'm going to pop my pills as soon as I get up.
I can't stand to feel like this any longer.

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