Increasing Levo but not feeling great

hellooooo

I've been having some trouble with increasing my levothyroxine lately and wondered if you could help please?

I've been taking levothyroxine for about 4 years roughly and it's very slowly been increasing (as expected). I started on 25, then 50, then I was on 75 for about two and a half years until I became symptomatic on that dose too. The bloods at the time of increase from 75 to 100 were

JULY 2023

TSH 1.17 (0.27 -4.2)

ft4 16.7 (12-22)

ft3 4.49 (3.1-6.8)

ferritin 85.5 (13-150)

folate 7.13 (> 3.89)

vit D 60 (50-200)

TPO (always below 50 on all tests since diagnosis in 2018 so I won't keep writing those).

I have done medichecks along the way too that were pretty much the same as the NHS one above.

These results were from July 2023, then increased to 100 and been on 100 since.

I was not told by my doctor to increase, I just increased by myself and he agreed. I have a really supportive doctor who kind of trusts me when I tell him how I feel and he lets me trial if I want to (within reason of course !).

Next results were from October 2023

TSH 0.022 (0.27 -4.2)

ft4 22.6 (12-22)

ft3 8.7 (3.1-6.8)

I was feeling better, I knew I definitely needed an increase because lots of symptoms disappeared, but I started to get really tired and anxious. Again, I did medichecks tests and monitor my health (x4 ) for accuracy during the months after this October test (end of oct, November, end of November, start of jan) and they were the same as the ones above, give or take a tiny bit.

End of January 2024 I tried to go to 88 to see if I had over shot the mark but I ended up feeling dizzy, had brain fog and started to get the familiar feeling of being hypo again. My job requires me to be sharp and quick thinking so I went back to 100 and ive been here struggling ever since.

I have some other vitamins results I wanted to share from this year that show my ferritin and bit D below range but my app has decided to stop working, so ill share when its back working again.

I have got a medick test sat on the side ready for Tuesday when they reopen after easter so I'll do another one I just wanted to hear your thoughts please if you have any about my situation. On 100 I do feel well, far far far better that on 75, I could never go back there. But ive become tired again (a different type of tired, not hypo tired) I wake up every night dry and dehydrated, and im too anxious. and I get really hot skin. And I can eat and eat and not gain weight, although im not thin, im a size 10/12 about 9 stone 7.

Please help! Thanks

(ive added a few things in)

[Hidden]

You’re very overmedicated. You only have to look at your blood results to see that!

While we aren’t slaves to ranges, they’re an important indicator when combined with symptoms.

tired and anxious

A different type of tired (we call it ‘tired but wired’)

I get really hot skin

I can eat and eat but not gain weight

These are all symptoms of overmedication. Your FT3 is too high. You need to reduce Levo asap and concentrate on increasing Vitamin D and Folate and other vitamins if not optimal. increasing Levo isn’t always the answer

[Hidden in reply to Hidden]

Thanks Maggie, but why do I get such strong hypo symptoms when i try and reduce? I get bad dizziness, fatigue (the hypo one), unable to concentrate. I really feel stuck between a rock and a hard place

I longed it out hoping that the blood results would settle as in the past after an increase the bloods have showed high end and then dropped again in the months after (ive edited again, sorry, spelling mistakes)

[Hidden in reply to Hidden]

The problem is that many of the symptoms of under and overmedication are the same. In your case, your blood results give the clue as to what is actually happening

The first thing to do is to make sure that your vitamins are optimal. If you find 75 mcg too low and 100 mcg too high, you could try alternating: 75 mcg one day and 100 mcg the next. Many people do this.

When I began my thyroid journey, I thought that the more Levo I took the better I’d feel. I was shattered; jittery and thought it was great that I could eat what I liked and not gain weight.

A terrible mistake. My metabolism was in overdrive

[Hidden in reply to Hidden]

Yes me too! I couldn't wait to reach 100!

I find a lot of the focus is on ranges ? everything has to be in the high end but that's just not the case is it. I know women on Levo who are fit and well and their frees are below 75% ofthe way through. So im a true advocate for finding what feels right for you rather than going off ranges that dont actually seem to be working for those people who become fixated on getting their numbers in a certain range anyway.

I wish there was a dose between 88 and 100 I could try, my body hates alternating doses, I seem to feel every microgram difference.

Is sore red skin around the eyes and nose a symptom of overmedication ? Sorry for the million questions, and thank you for the kind informative responses you have left for me, im really grateful.

[Hidden in reply to Hidden]

How did you get 88 mcg Daisy?

[Hidden in reply to Hidden]

for the 88 I use a 50, a 25 and half a 25

[adin in reply to Hidden]

why don't you try Tirosint-gel caps, they make intermediate doses as well...maybe you need some T3.

[helvella in reply to adin]

Because Tirosint is not readily available in the UK?

[tattybogle in reply to Hidden]

I don't know how long you gave it on lower dose Daisyfred, but in my experience , reducing can often feel very undermedicated for the first 4 or 5 weeks , even when the reduction did ultimately improve how i felt .

So i now learnt not to judge the effect of a dose reduction on how i feel until i've given it at least 6 wks ..... in the past i'd only given it 2/3 wks to try a lower dose before deciding it was undermedicated.

I've had several small dose reductions over a few yrs , some necessary , some not .

The undermedicated symptoms often started to settle by wk 4/5 and gradually improved thereafter and by 3/6 months i was feeling much improved compared to how i was on the previous dose .

One time they didn't improve and continued to get rapidly worse after 5 wks , and on that occasion i did need to put the dose back up.

I think it takes the body a while to readjust itself ... and it sometimes throws a tantrum first (cos it senses the drop in levels ? dunno )... initially causing constipation / brain death / fatigue etc .. then gradually realises 'oh... actually , now i've got used to it , it seems this is enough for my needs after all.'

[Hidden in reply to tattybogle]

thank you so much for this! that makes perfect sense, I hope that's what's happening to me. Im never able to give it more than 2 weeks. I've got two weeks off now so maybe nows the best time to try because I can be at home for the hard bit. Do you think it's worth going between 88 and 100 first or would you just drop to 88?

Tattyboggle, if someone remains overdosed over a long period of time, can the body begin producing reverse T3 and then the blood tests will start showing lower ft4 and lower ft3 because it's being used up to be converted to reverse t3 ?

[tattybogle in reply to Hidden]

We make some reverseT3 (rT3) all the time , it's a natural part of the body's iodine recycling system.

when T4 gets into in the cells, the deiodinases) turn it into some (active) T3 , and some (inactive)reverse T3.

for example lets say it usually wants to make 50% T3 / 50% rT3 ....just an illustration , can't remember the real amounts...

having more T4 than the body thinks it needs ( and continually topping it up with a too high dose) will cause the deiodinases to try to convert more of the T4 into rT3 (in an attempt to slow things down ), so they change to making ,lets say ,30% T3 and 70% rT3 ..... so rT3 goes up, and so T3 is lower. (T4 won't be lower because you keep topping it up )

It's a fair bet that you have quite a lot of rT3 from looking at your high fT4 results

but if you lower the fT4 level , the rT3 level ought to go down on it's own ... (and it's theoretically possible you will then get a bit more T3 from the T4 you take) because the deiodinases can then go back to making 50/ 50 as normal .

Very oversimplified example obviously , it's fiendishly complex in reality .

You could either do 88 a day and just accept that you may well be signing up for a rubbish month , but at least you'll get there quicker .... or try and sneak it past yourself without your body noticing eg. use Slowdragons suggestion of dropping to 88 for 2 days a week , then reduce further later on .... it's swings and roundabouts .... personally i felt just as undermedicated when i dropped by 6 mcg/ day as i did when i dropped by 12mcg / day ...but i've never tried going any more slowly than that. ...i'm patient... but not that patient . lol .

[Hidden in reply to tattybogle]

This is soooo interesting.

A woman from work had a situation like mine, she was over medicated and stayed over medicated for months. She obviously got worse but her ft4 started going down and her ft3, and it’s only when she cut back that things went back to normal. Could this have been a reverse t3 situation ?

I understand what you mean there. Twice a week on 88 sounds like a good shout for me because I feel like if I get too symptomatic I’ll think I’m setting myself up to months of recovering from undermedication and start panicking.

[tattybogle in reply to Hidden]

Could this have been a reverse t3 situation ? dunno .. theory is one thing, but the reality inside the individual body is way more complex.

impossible to know what was going on from one isolated example ... eg i've reduced dose when my fT4 was through the roof .. and... it went up some more.....leading to GP thinking i'd misunderstood his instruction and increased my dose .... but at other times it has gone down as expected.

There's a lot of outdated codswollop on the subject of rT3 on the internet .. try not to get too hung up on it or you'll drive yourself nuts... nobody knows much for sure because hardly anybody tests rT3 anywhere near often enough to get the full picture of what's happening to theirs... it costs about £100 a time to test it ....and there are loads of other potential causes of high rT3 , not just high T4 ..... but since you know your T4 is high you can assume you'l also have highish rT3.

if you want to try and understand the science of it, try reading some of the articles on ThyroidPatientsCanada site here; thyroidpatients.ca/home/sit...

still complicated , but she does pictures .lol

[Hidden in reply to tattybogle]

Oh cool thank you ! I’ll have a look at those 😃 it is interesting… but yes, best not get to hung up on it.

See you all in 6 weeks 🤞 thank you all

[Hidden]

Crikey! That’s a bit of a mission 😉

If you can’t alternate I think you should stick with 75 mcg, optimise those vitamins and give it at least 6 weeks before you make a decision about what to do next.

[Hidden in reply to Hidden]

75 I can honestly say without doubt that I was undermedicated, I wasnt going to the toilet for weeks at a time among other nasty things!

88 is such a common dose, you just get your Levo in 50's and 25s' then split one 25 with a pill cutter. Perhaps I should look a dropping to 88 its just so hard. Thank you for the advice really appreciated

[Hidden in reply to Hidden]

Dropping to 88 mcg would be an idea - but make sure you give it long enough on that dose and that you’ve got enough of each pill to maintain it

Good luck Daisy 😉

[SlowDragon Administrator]

If your vitamin levels are low these need improving as first step

You certainly appear to be over medicated

Which brand of levothyroxine are you taking

Do you always get same brand at each prescription

How much do you weigh in kilo

Suggest you initially reduce dose Levo by 25mcg PER WEEK - as 12.5mcg twice a week

You are likely to notice even this small reduction and initially may feel worse

But restest again after 6-8 weeks you should see some improvement in symptoms by then

You may need to adjust dose further after this

[Hidden in reply to SlowDragon]

Thank you SlowDragon

What happens if vitamins aren't addressed? I know they need to be but what is the reason foe this with regards to Levo please?

I have always taken different brands. At the start of my journey I realised Teva left me feeling undermedicatd so I never took that again. I then started using accord or mercury Pharma with no issues at all. But ive noticed when I take accord in 100 it feels different to two mercury Pharma 50s, which leave me feeling wooly headed. Accord 100 feels much stronger.

Ok, thank you, so I stay on 100 but twice a week I'll take 88. Today I took 88 so ive started already.

I appreciate your advice and help so much. I really need to be functioning for work and I get married September Im terrified I'll be on a bad thyroid week. I think that's why ive stayed on 100 for as long as I have.

Ive got a plan now though so I'll stick with it and post back with some new results from 100 plus twice a week 88.

in kilos I am 61. maybe a bit less

[SlowDragon Administrator in reply to Hidden]

So work out which you prefer …..Accord or Mercury Pharma and ONLY accept that

Accord don’t make 25mcg tablets

Accord also boxed as Almus via Boots

Different brands are not “bio equivalent “

Meaning 50mcg in one brand will give different results to 50mcg in a different brand

To process Levo well and get best conversion rates of Ft4 to Ft3 we need to maintain OPTIMUM vitamin levels

Guidelines on dose by weight

61kilo x 1.6mcg = 97mcg per day

But some people need a bit less than guidelines …..some a bit more

So this also suggests you are on slightly too much Levo

[Hidden in reply to SlowDragon]

so your suggestion of dropping slightly twice a week seems like the perfect starting point. Ill be back in 6 weeks with some fresh bloods

thanks again for the help, I feel like ive got a good plan set up for going forward now. that might sound silly but I get in a muddle with things sometimes when my mind is racing and just end up spinning on the spot a bit!

[HealthStarDust]

You are overmedicated. It might be best to lower your dose. But, I can see you have mentioned you tried this and felt worse.

Perhaps hold your dose and resume? Who knows… it works for some! I can totally relate as I am experiencing the same. 100mcg too much, 75mcg seemingly to little. Tried 88mcg that also seemed to little. Recently tried 92mcg (using alternate day dosing) and felt worse in some ways, and better in others although alternating doses doesn’t suit me either !

Good luck.

[Hidden in reply to HealthStarDust]

When I went to 88 i felt some relief initially, the dose felt good ! and then I crashed so went back to 100. Whether it was a crash or my body just adjusting I’m not sure now, I didn’t give it much longer than a couple of weeks. but then after going back to 100 slowly the over med signs crept back it. I noticed the month after I tried lowering to 88 that I had the most evil pmt I’d had in months, you know the hypothyroid type that kicks in half way through the month instead of a few days before.

Is it even possible for us to chop up a dose between 88 and 100? I guess it would mean cutting a 25 into quarters, not impossible !

Does low vitamin D affect people who take levo?

Thank you for taking the time to reply to me

[HealthStarDust in reply to Hidden]

Is it even possible for us to chop up a dose between 88 and 100

I tried this this last week by alternating 87.5mcg and 100mcg, to get an average dose of 92mcg. I still felt overmedicated, despite withholding the thyroid replacement for a week before trialing this. I also noticed the effects of alternating doses hugely. So, I think my only safe choice for now is go back on the 75mcg and work upwards as I suspect due to being overmedicated I probably still have more t4 in my body than it likes.

[HealthStarDust in reply to HealthStarDust]

Hidden I think your response to me disappeared? At any rate I PM you my response anyway.

[Hidden in reply to HealthStarDust]

Thank you, will go and reply

[greygoose]

Have you had your Tg antibodies tested? They could be high even if your TPOab are within range. Because all that FT3 can't possibly be coming from your small dose.

[Hidden in reply to greygoose]

It most definitely is I’m afraid !

I sure did. They are 25 (<115)

The ranges for tpo antibodies on my tests say mine are over range (<35)

My tsh is very often low on any dose but my doctor and nurse go by my free t’s.

I think you’d be very unlucky to find a medical professional that doesn’t know how to read thyroid results from a healthy person or a person being treated with levothyroxine. From my observations even nurse prescribers know not to go by tsh alone in this day and age.

[greygoose in reply to Hidden]

Oh, I'm sorry, I thought you said somewhere that your TPO antibodies were negative. If they're over-range you have Hashi's so that's going to be why your levels are so high, nothing to do with your dose of levo: you're having a Hashi's 'hyper' swing. The levels will go down by themselves, so if you're going to reduce your dose, do it by yourself, don't involve your doctor because once a doctor reduces a dose, he doesn't like putting it up again! And, when that excess hormone is used up/excreted, you're going to need your full dose again.

[Hidden in reply to greygoose]

Don’t they ? Oh dear that sounds awful ! I guess doing it on your own and paying for tests is the only way sometimes, thank goodness for medichecks!

I thought that too, but I tested multiple (over months) times and got the same result. I have always been aware it is autoimmune.

How can we ever tell which readings are a “hashis swing”? I’ve never heard yet before it sounds really funny

I think I’ll still to reducing on those two days a week, hopefully it can’t do that much harm either way

At least I’m not a poor converter 😉

sorry I’ve edited this a few times !

[greygoose in reply to Hidden]

A Hashi's 'hyper' swing is when the dying cells in your thyroid - after an immune system attack - deposite their stock of hormone into the blood, and the levels of FT4 and FT3 rise sharply whilst you're still on the same dose. Therefore, your sudden high levels have nothing to do with how high your dose is, the hormone is coming from your damaged thyroid.

So, the best thing to do is to reduce - or stop - your thyroid hormone replacement temporarily, until your levels go down again, and you feel hypo. Doctors don't understand how this works, and slash your dose, thinking you're over-medicated (they're that illogical!) and then don't want to put it back up again when you go hypo again. We see this over and over again on here.

[Hidden in reply to greygoose]

They probably panic ! It’s shame some don’t have the knowledge they need. Mine does thankfully !

[greygoose in reply to Hidden]

Yes, they do panic at the sight of a low TSH. But, if your FT4/3 double the TSH is obviously going to be low. And it's low because with all that hormone in the blood, the pituitary decides that it doesn't need to try and stimulate the thyroid anymore. But they don't know that. The TSH will rise again as the thyroid hormone levels drop.

It most definitely is I’m afraid !

I've just worked out what you meant by that comment. lol Bit thick this morning. You believe that your high FT3 is due to your 100 mcg dose of T4. But T4 cannot convert into more T3 than itself. Only a maximum of 30% of T4 is ever converted to T3 (30% to rT3 and the rest is excreted). So, the level of FT3 will always be lower than the FT4 - only slightly if you're a good converter but still lower. Look at the percentages of your last blood test:

ft4 22.6 (12-22) 106.00%

ft3 8.7 (3.1-6.8) 151.35%

The FT3 is much, much higher through the range (and out of it!) than the FT4, so it's impossible that it's all coming from your 100 mcg T4 that you're taking. So, that high FT3 has nothing to do with your dose of levo.

[Hidden in reply to greygoose]

oh ok. Are the percentages a hard fast rule for everyone ?

Perhaps it’s just gone haywire for a bit then, like you said.

I guess I just thought it wasn’t a flare since I’d got the same results over a period of months, let me check to see on those if free t3 was higher than ft4. Perhaps it was just on this test that it was higher. I used this one as the example because it was the worst.

If you got my results would you stay on the same dose?

Many edits again I’m so sorry, I’ll make sure everything is in there before I reply in future. I’ve stopped now !

[greygoose in reply to Hidden]

Are the percentages a hard fast rule for everyone ?

I don't know what you mean be that? All results can be worked out in percentages, and the percentage of FT4 will always be higher than the percentage of FT3 in someone who has a healthy working thyroid. But we are talking about someone with Hashi's, and that changes everything. There are no rules with Hashi's.

And it doesn't matter which is highest, if the levels suddenly shoot up without you increasing your dose then it has to be a Hashi's swing.

[Hidden in reply to greygoose]

you literally just posted my ft4 and ft3 in percentages and said the ft3 can’t be higher than ft4. I then said , “is that the rule for everyone”? Meaning, can no one have a ft3 higher than ft4 and it not be a hashis swing.

I’m so confused with your comments they contradict each other

I did increase my dose.

I’ll try and read through this properly later, thanks for the comments.

[greygoose in reply to Hidden]

I'm only replying to your questions. You asked if the percentage thing was a hard and fast rule for everyone. I didn't really understand your question so maybe that's why you find my explanation confusing.

I know you have Hashi's and not a healthy working thyroid, but I was saying that in someone - not you, but someone else - who has a healthy working thyroid the FT3 will always be slightly lower than the FT4 percentage-wise through the range.

With Hashi's there are no rules because you never know when thyroid hormones are going to leak into the blood altering ratios of T4 to T3. There is no contradiction there, it is a comparison of a healthy working thyroid to a Hashi's thyroid. That's all. If that's not the answer you were looking for, I apologise. Perhaps you could explain in more detail what your question was.

[Hidden in reply to greygoose]

I am so confused.

I received all the answers I was looking for and more, thank you again for the replies.

[greygoose in reply to Hidden]

You're welcome. But I'd hate to think I confused you. What is it that you're confused about? Maybe I can explain a different way.

[HealthStarDust in reply to Hidden]

Depends on your GP. Mine have been fine to let me increase dose again.

[HealthStarDust]

Thank you for this post. I have learned a lot from the posts, and it all helps.

[Hidden in reply to HealthStarDust]

Thanks health star dust, it's so good to talk to other people with the same condition as me.

[HealthStarDust in reply to Hidden]

It is!