Help! How do you feel when starting Levothyroxine?

[SarahJane1471]

Hello

I joined this group some time ago ( I think about a year ago). I posted my results from blood tests at that time and had some great advice . Since then I have read many many posts and educated myself as much as I can on hypothyroidism. I’ve taken the suggested vitamins and taken care of myself with diet and exercise when I’ve felt well enough.

My results 18 months ago did not meet the Nice guidelines to suggest I needed Levo. But after still feeling crap I spoke to my GP of 20 yrs again and asked for a retest of everything. She is a great GP and listened to me and realised that I knew a lot more from educating myself about my thyroid. Bloods taken and my GP called me and said she had spoken to an endocrinologist and as my FT4 was below the range he would prescribe Levo. Results are

TSH 3.32 (0.3-5.0)

FT4 11.3 (12-22)

FT3 4.2 (3.1-6.8)

TP antibodies 6 (<100)

B12 380 (200-960)

Ferritin 86 (20-350)

Folate 9.6 (3-18)

Endo also suggested further blood tests for possible pituitary gland problems (central/secondary hypothyroidism) these bloods will be tested when I have repeat tests for thyroid levels in 3 weeks.

So 3 weeks ago I started on 25mcg levothyroxine (TEVA). Within a few days I felt incredible 😳it really felt like night and day . My energy levels went through the roof. I woke up feeling refreshed and ready to start each day. I was shocked how well I felt and realised how badly I had felt for the previous 2/3 years.

I have continued with B supplements/ D and magnesium and a healthy diet.

But, after 2 weeks I felt like the Levo was tapering off. I have not lost all the energy I had for those 2 weeks but it’s as if I have gone from 1/10 energy to 9/10 then back down to 7/10. Is this normal when starting levothyroxine??

I did try 50mcg for 2 days but I felt terrible 😞 so today went back to 25mcg.

I must add that all my joint/ muscle pain has virtually gone. Even my eyesight has improved ( like l am seeing everything in HD) and I had not even realised this was a problem. Every symptom I had 3 weeks ago has almost gone!!! What an amazing feeling.

This group really has educated me sooo much and enabled me to have the confidence to speak to my GP in an informed way. So thank you guys and well done 👏 👏👏👏

But what should I expect next ?

How long will it take for my thyroid to stabilise?

Thank you

Sarah

[greygoose]

How long will it take for my thyroid to stabilise?

It won't 'stabilise' - whatever that means - on just 25 mcg. You need an increase up to 50 mcg, then probably 75 mcg, and so on until you are well.

But, after 2 weeks I felt like the Levo was tapering off. Is this normal when starting levothyroxine??

It's normal every time you change dose. It's not that the levo is 'tapering off', it's that your body, whilst grateful for the increase in levels, realises that it's not yet enough and you need an increase.

It's not about 'stabilising your thyroid'. Levo doesn't actually have any effect on your thyroid. It's thyroid hormone replacement, replacing the hormone that your thyroid can no-longer make itself. And it's about raising your levels of FT4 and FT3 until they are optimal. You can be 'stable' with a TSH of 100, but you won't feel well. So just 'stabilising' isn't good enough. It's optimising the thyroid hormones that makes you feel well.

[SarahJane1471 in reply to greygoose]

Thank you for your reply. This all helps my understanding. I did try 50 mcg for 2 days but I felt worse 🤷‍♀️

[greygoose in reply to SarahJane1471]

2 days is but a blink of the eye in thyroid terms. Might pay to be a bit more patient and insistant. Nothing happens fast with hormones.

[SarahJane1471 in reply to greygoose]

Sorry I probably didn’t explain myself very well . I meant I felt unwell for those couple of days. Jittery/nauseous/ awake most of the night. I felt worse than before starting Levo.

[greygoose in reply to SarahJane1471]

Maybe nothing to do with the levo? Could be you had some sort of bug? Or, did you have a change of brand when you changed your dose? Not all brands suit everyone.

[SarahJane1471 in reply to greygoose]

Same brand, but I am very sensitive to medication. I reduced back to 25 mcg today I feel good again so it was definitely the higher Levo. I’ve ordered B12/Folate/ferritin so will start taking that and wait for blood test results when I retest in a couple of weeks. Thank you for your help 🙏

[greygoose in reply to SarahJane1471]

You're welcome.

[Lalatoot in reply to SarahJane1471]

Please don't take this as me putting any doubt on your sensitivity to medication. I just want you to be aware that i unintentionally kept myself undermedicated for years because I thought that my symptoms were caused by increasing doses of levothyroxine. The symptoms I now know were caused by not being on enough. When we change doses we can often feel worse to begin with.I was so sure levo was making me ill I all but came off it and I made myself very ill in the process. If you want to know more about my big mistake you can read it here

healthunlocked.com/thyroidu...

[SarahJane1471 in reply to Lalatoot]

Ok . Thank you 🙏 i will bear that in mind. I only started Levo 3 weeks ago so I may have been a bit impatient. Really appreciate your thoughts.

[SarahJane1471 in reply to SarahJane1471]

Just read your thread 👏👏👏

[humanbean]

B12 380 (200-960) 24% of the way through the range

Ferritin 86 (20-350) 20% of the way through the range

Folate 9.6 (3-18) 44% of the way through the range

Having poor levels of nutrients will reduce your tolerance of Levothyroxine. I notice you haven't had vitamin D tested, and it is also important for taking Levo.

Your Vitamin B12 needs to be a minimum of 500, but better still would be top of the range. A result of 1000 is considered optimal by many. Vitamin B12 is the only nutrient I know of that gets tested frequently that can go to top of range or even a bit over because it isn't poisonous in overdose. The best supplement for B12 for most of us is methylcobalamin which can be bought on Amazon and other sites selling supplements. I would suggest a dose of 1000mcg per day.

stichtingb12tekort.nl/engli...

Optimal levels of folate are upper half of the range i.e. 10.5 - 18 with the range you've given. You could supplement with methylfolate if you want to raise it but you won't need to take a dedicated folate supplement for very long.

chriskresser.com/folate-vs-...

It is a good idea to supplements all B vitamins rather than just one or two. I suggest taking a good quality B Complex along with the dedicated B12 and folate, but you should drop the extra folate and B12 once your levels are optimal, then keep on taking just the B Complex.

One of the most popular B Complex products is Thorne Research Basic B :

thorne.com/products/dp/basi...

Any product containing biotin can cause problems with testing and can distort results so it is essential to stop taking any product with Biotin in for up to a week before doing testing of anything.

healthunlocked.com/thyroidu......

I'll add to this later. I have something to do this evening.

[SarahJane1471 in reply to humanbean]

Thank you for your prompt replies. I take BComplex supplements but I will look in to changing to your suggested ones 👍

[SarahJane1471 in reply to humanbean]

I’ve ordered B12/folate/ferritin and will start those and wait for blood results in a couple of weeks . Thank you for you advice, really appreciate your thoughts 🙏

[tattybogle]

Any dose change needs you to stick at it for 6 weeks (at least) before you can tell if it will ultimately feel better or worse. The thyroid regulating system is very complex and it makes it's own rebalances and adjustments after you make any dose adjustment ,, these take time.

Just as the 25mcg made you feel great for a short while ,but then once your HPT axis noticed the extra it compensated and probably reduced your own thyroids T4 production, and then you felt less good (which is extremely common)

Sometimes a higher (or lower) dose will feel bad for a few days even a few weeks , but that doesn't mean it was a mistake .

You have to think about noticing the effects of Levo dose changes in terms of weeks and months rather than days.

The 6 week wait for a blood test after a dose change is because it can take the TSH at least that long to react and then settle down .. and your TSH changing in turn affects the proportions of T3 / T4 your own thyroid produces, and also how efficiently you convert the T4 from Levo to T3.

So whatever happens for the first few days/weeks on a new dose (within reason).... you should make a note of , but basically ignore it and carry on.

[haggisplant in reply to tattybogle]

Was coming to say this. 6 weeks then test, symptoms sometime take longer to settle but 6 week is when the Levo has stabilised at a constant amount in your blood. I sometimes wait 2 months so it’s at the same point in my menstrual cycle to compare.

Never alter dose without a test and via gp. This is due to the half life of thyroxine, which is long, between 7-10 days. The extra dose can also sometimes skew any test results done in the next few weeks.

Your whole system can feel rocky, up and down for a while while titrating up. Being too high can be as bad as too low.

Always stop biotin for a week before testing thyroid and take thyroxine after teat. Test as early as you can consistently keep to each time.

[SarahJane1471 in reply to haggisplant]

Thank you that’s very good advice 🙏

[SarahJane1471]

Ah that makes a lot of sense. Thank you. I probably was a bit impatient and tried to up my dose too fast. I will now take the supplements suggested and wait for the blood tests in 3 weeks time. Thank you 🙏

[tattybogle in reply to SarahJane1471]

some people do find even 25mcg changes a bit much all at once, so you could try increasing dose by just 12.5mcg instead for a few weeks first next time . then increase the next 12.5mcg once used to the first.

[SarahJane1471 in reply to tattybogle]

What a great idea 👍and that is why this forum is so good 😊. It really did feel like I had too much too soon. Thank you 🙏

[PixieElv]

Have you tried 25 and 50 on alternating days? Or cut a pill with a pill cutter? It took me a while to get up to my levels and I had to alternate/cut pills. Some times it took up to 4 weeks for my body to get used to the higher levels.Ps. I’ve got central hypothyroidism too, so maybe it’s something to do with that? (Or maybe not 😂)

good luck, I hope it works out

[SarahJane1471]

Thank you 🙏 it’s such early days (3 weeks).I’ll wait for the next blood results . Thanks again

[waveylines]

You're right to wait for 6-8 weeks between any dose change in thyroid hormones. If you think of your body as an engine it has been running really slowly for a very long time and it takes time for the extra juice you are putting in to get round the whole system and into each component. Another analogy is of being in hibernation, again every part of the body runs slowly and needs to be waken up slowly. Increasing in increments over months does just that. So slowly your body adjusts wakes up and starts to run properly again in the end. If you rush the process the body become overwhelmed and you will get symptoms of being over medicated...... Ibfact recent research has shown that animals in hibernation have low keels of thyroid hormones which increase slowly back up ascthey wake up!When I was going through this process I found it very frustrating!!

[RoboTh]

I started levo a few months ago & I feel exactly the same, brilliant response to dose then mine tapers off at week 3 & my symptoms return. It's the same with each ,25mcg dose increase. It takes time. Hopefully when you are on the full dose you'll stabilise x

[SarahJane1471]

Thank you guys. That makes absolute sense and how I felt taking the extra. I feel really good today. I will take all the advice given and start B12/folate/ferritin supplements on top of my VitD and complex B.Thank you all the advise is brilliant 🤩

[Litatamon in reply to SarahJane1471]

Heads up on the b12. Some people feel no difference between the different forms of b12, but quite a few of us on the pernicious anemia site here do not do well on methylcobalamin. Of course you might do fabulous. Just wanted you to be aware that for some even a small amount can produce agitation and restlessness - a wired feeling.

I don't want you to assume, if that happens, that it has anything to do with your thyroid meds.

All the best.

[SarahJane1471 in reply to Litatamon]

Thank you I will certainly keep that in mind. I have ordered the mouth spray 🙏

[SarahJane1471 in reply to Litatamon]

What B12 would you recommend?

[Litatamon]

Hi Sarah, It is honestly not what I would recommend as every person's body processes the different forms differently. Or some with no difference at all. I have to take b12 shots. I do cyanocobalamin and hydroxocobalamin. Cyanocobalamin works the best for me, but it is continually maligned by the masses. So it really is a try and see situation. If your spray is methylcobalamin and you feel great on it, wonderful. I just didn't want any possible side effects from that to confuse your head on your thyroid medication. I know how difficult it is to pinpoint the source of a side effect.

[SarahJane1471 in reply to Litatamon]

Thank you I will take that on board 🙏