Hashimoto meds playing up: Hey! So it’s been a... - Thyroid UK

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Hashimoto meds playing up

1123ayoung profile image
30 Replies

Hey!

So it’s been a long time since I posted here.

I have been balanced out for around 5 years now on levothyroxine 125mcg daily.

Just before Xmas I had my routine bloods done and was told I was over medicated. I did feel the effects of this.

I came down to 100mcg and was then told I was under medicated so 6 weeks ago I was told to take 112.5mcg.

The last 2 weeks I have felt the worst I ever have. I’ve had extremely bad fatigue to the point my arms ache. Head ache, body aches and chest pain.

My bloods came back which have flagged up thyroid, cholesterol and folate. I have to see the doctor tomorrow.

I guess my question is why all of a sudden has my thyroid played up? And should I be concerned about folate and cholesterol?

I don’t know where else to turn and you guys helped me so much when I was first diagnosed and really poorly.

Thank you xx

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1123ayoung
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crimple profile image
crimple

1123ayoung have you always taken the same brand of levothyroxine? Assuming you took 1 x 100 mcgm and 1 x 25 mcgm , were both tablets same brand? Did you split a 25 mcgm tablet to get to 112.5mcgm? Do you have any recent blood results TSH, T4 and T3.

1123ayoung profile image
1123ayoung in reply tocrimple

Morning.Thank you for replying

No the brand has changed since they’ve changed my doses.

I take 1x 100mcg and 1x 12.5mcg. I never knew they done these so assuming they’re maybe new?

I don’t have but I am going to doctors today so I will find out.

When I went to hospital (chest pain) last week they did tell me that on the 11th of March my thyroid was normal range but tsh raised.

EebieJeebies profile image
EebieJeebies

Could other hormones be impacting? I read that falling oestrogen levels can mean less levo being needed 🧐 I don’t fully understand it tbh but sharing in case it is an avenue to consider

Lalatoot profile image
Lalatoot

You were well and stable on your long standing dose. Changing the dose has put things out of kilter and you now have hypo symptoms.I would be asking why you were told to change your dose and what your actual test results were.

TSH is not a reliable marker for dose changes. FT4 needs to be looked at. Ideally FT3 as well but GP s don't often test that.

crimple profile image
crimple

A lot of people cannot tolerate TEVA levo. Actavis/Accord/Almus are all the same except that 25mcgm tablet Northstar is actually TEVA. I cannot tolerate TEVA made me very ill.

tattybogle profile image
tattybogle

a) A couple of years after menopause i needed a bit less levo than i'd been stable on previously., but since you're only 36 ish ,i doubt it's that.b) There have been some reports on here of previously stable thyroid levels having a wobble after Either Covid infection / covid vaccination .

c) And of course you have hashimoto's.. and that in itself can cause fluctuations, eg:

~Immune system attacks a bit more of the thyroid/

~ Damaged Thyroid releases a load of T4/T3 all at once into the blood .

~ fT4/fT3 levels go up ,TSH goes down ....& .you feel overmedicated.

~GP see's low TSH/high fT4 and symptoms , and reduces levo dose.

~But then the 'extra' T4/T3 that was chucked out of the damaged thyroid gradually gets used up.

~Thyroid is now more damaged than it was before .. so ? less able to produce it's own T4/T3 than it was before .. & you are now on a reduced dose .... so fT4 goes lower/TSH goes up .

~ GP sees higher TSH /lower fT4/symptoms of hypo returning, and increases dose again.

d) Sometimes , (as you've already discovered when they tried to take you off) GP's are too heavy handed in their dose adjustments..... if you were a bit overmedicated on 125mcg , it's possible that reducing to 100mcg was too big a reduction ... and you are now feeling the knock on effect of a few months at too low a dose , even though dose has recently been increased a bit ..... but see what your latest bloods results say.

It will help you understand what 's really been going on if you can get hold of you actual results eg. TSH 3.5 [ 0.4- 4] and fT4 14.3 [12-22] & fT3 ~ make sure you get the [ranges ] with them, as they are all different. (They may not have done fT4 or fT3, sometimes NHS just test TSH)

Ask reception for a printout of the thyroid blood results that led to the dose reduction to 100mcg , and the ones for the increase back to 112.5mcg , and the current ones .

As long as a GP has previously seen the results you have a legal right to have them... if they ask why do you want them ?".. just say " for my records" and leave it at that.

or ...enquire about setting up online access so you can always see them. you have to set up some 'enhanced access' to see the actual results rather than just the 'comment, normal , no action' (Not all surgery's have got this sorted out yet) .. and if you just want one or two results it's easy enough to just ask at reception..

(well, it is once you've 'trained' the receptionists.. some of them will look at you like you've just asked for the keys to the safe, lol )

tattybogle profile image
tattybogle in reply totattybogle

just noticed they gave you 12.5mcg tablets ? These will be TEVA brand .... lots of people feel really yuck when they take Teva ( but a few people feel best on them )

Have you had TEVA brand before for other sizes ? ... if not , the brand change could be part of why you feel yuck.

p.s i'm surprised they prescribed 12.5mcg tablets ,,,they cost a fortune , packs of levo are usually around £1, no matter what dose ,,,, but 12.5mcg packets are about £13 !!

Most GP's would usually prescribe 100/125 alternate days .... to get 112.5mcg.. some of us split a 25mcg in half to get 12.5mcg so we have the same every day.......

But if your TSH was high last week, it looks like your dose will be put back up again anyway.

Hope you feel better soon .

elaine2447 profile image
elaine2447 in reply totattybogle

Can you describe what your "yuck" felt like on the TEVA. I ask because I was recently started on 25mcg, the small dose because the GP had to get permission from the endo dept due to a possibility of going hyper and I have Hashimotos. So the first four mornings I took the levo and then gradually as the time passed and got to 10 days I felt more and more sort of nauseous and generally unwell. The problem is I don't feel well most of the time anyway, so always difficult to know what it is. Anyway, I cut them in half and not feel quite so bad the last four days but it could be a coincidence. Needless to say, the levo I have are TEVA.

tattybogle profile image
tattybogle in reply toelaine2447

Well ..... its funny you should ask because , for the last 2 weeks i had decided to use up packet of Teva 25's that i had left over ... Even though i was already convinced i don't like them .... but i do like to 'double check' my thinking occasionally incase i'm kidding myself ... and i was tiding up my spare tablet stash,,

sooo today is about day 10 ... i can't say for sure because today i have a nasty headache and can't concentrate vey well cos it hurts to count and i've felt so naff for the last 3/4 days i stopped giving a **** what day it was somewhere over the weekend .. and i had a nasty headache on saturday too, or was it friday ,,, i've just come back from dragging myself to the chemist to get my prescription and the post office to get some gas ,,,, i was leaning on the queue rail in the post office .. feeling lousy ... thinking haven't felt this lousy for an awful long time .. i feel a bit sick but i dunno if that's because my headache is so nasty . ... for the last 2/3 days i've been noticing my top lip feels a bit tingly / numb.. bit like a nettle sting .... and for the first time in many months i had to wave a car past that was slowing to let me cross the road .. because i really didn't feel able to hurry up .Normally i walk home the long way round along the beach but today despite it being lovely and sunny ,, i couldn't be arsed and walked home with all the noisy smelly traffic on the road cos its shorter........I felt perfectly ok a couple of weeks ago.

So .... i now consider myself well and truly convinced that my dislike of Teva is not placebo ... my Other Half has just asked if i'm alright ?',

I told him what i did ..., he said well that was a bit stupid , don't do it again .... i agree.

The last time i had it a year ? ago , what made me think 'i don't like this brand' was that i was feeling fine , quite bouncy in fact, and had been for a couple of months, enjoying the drive home from dropping my kid off at work everyday , and usually thinking "where shall i go now ?," .....then had Teva for about a week and a half and by about day 10 i was thinking 'i feel so knackered i just want to go straight home...'

i finished off that prescription and carried on feeling a bit 'flat' ....then next time made sure i got some of the other brand i usually have ,and felt much better again within 2 or 3 weeks .

Chemists and doctors will look at you like you're stupid if you suggest you can feel a difference on different brands ... but trust yourself, You're the one taking it, not them.

it is definitely worth asking to try a different brand .. teva seem to be best for a few poeple, and horrible for others.

elaine2447 profile image
elaine2447 in reply totattybogle

Many thanks for explanation. Sounds like TEVA is to be avoided at all costs. I sent for some diazapam, and guess what TEVA. Hopefully these generic drugs use the same ingredients generally.

tattybogle profile image
tattybogle in reply toelaine2447

There's nothing wrong with Teva brand as such ... eg they make liothyronnine that is perfectly good and i'm sure the Diazepam is fine too, it just so happens that the Levo they make is formulated to be lactose free.. which means they use a different ingredient ,, mannitol.. which does seem to upset some of us .. however if someone happens to need a lactose free tablet then Teva will probably be better for them than 'something else'

Lulu2607 profile image
Lulu2607 in reply totattybogle

Hi. Like you, I tried Teva and got very bad headaches, migraines, and felt generally unwell. Also like you, I couldn't be sure it wasn't a coincidence as I was working up my dose at the time having been diagnosed as very hypothyroid and wasn't feeling great. Anyway, having read others comments about Teva I didn't give it it a second chance and now specify not Teva on my prescription.

1123ayoung profile image
1123ayoung in reply totattybogle

Hey.

Apologies just back from the doctor and read these.

The doctor showed me my results and basically my tsh has went from 9.3 to 19.4 but my thyroid is 4. She said my thyroid was in normal range but my tsh is working harder.

My cholesterol was 6.2 and my folate level was really low.

I have now to go back on 125mcg daily and test in 6 weeks. To take folic acid and she’s not medicating cholesterol at the moment .

The 12.5 is TEVA. My 100mcg are ARISTO? And 25mcg are wockhardt.

It’s interesting about covid. I went over medicated before Christmas and then in February I had covid . So I have had covid in between meds being changed.

Just need to hope these meds kick in quickly so I can feel a little bit alive again. So fed up .

I really appreciate all

Your help. I will need to go back in and ask for print out as she said the rest of my results were satisfactory xxx

tattybogle profile image
tattybogle in reply to1123ayoung

do you mean TSH was 9 on 100mcg ....and is now 19 on 112.5mcg ?

"Thyroid ( fT4 ?) is 4 "

Are you sure you've got these the right way round ?

9 (and 19) are very high for TSH result ....and 4 sounds extremely low for fT4 ?

1123ayoung profile image
1123ayoung in reply totattybogle

Maybe I have them wrong way round. I’m not very clued up. She just showed me the numbers and the 19.4 she said had nearly doubled since last bloods from 9.3. She said it’s showing it needs to work harder. The other result was 4 xx

1123ayoung profile image
1123ayoung in reply to1123ayoung

On 100mcg bloods I was 9.3 and on 112.5 it has went to 19.4. So she’s now put me back to my normal 125mcg. I feel very poorly. I told her I have new symptoms from when I’ve been low before with headaches, chest pain etc but she said these are common for low thyroid xx

tattybogle profile image
tattybogle in reply to1123ayoung

ok ,, the way she's explained it , i think you were right and it does sound like TSH is 19..and FT4 is 4 ...... in which case it's no wonder you feel utterly horrible.

TSH of 3 or 4 would be your pituitary 'asking nicely' for your thyroid to make a bit more T4 /T3

TSH of 19 means the pituitary is literally 'yelling' at your thyroid to 'hurry up and make some more T4 /T3 please " ...... which, once you are on levo means "GP, please increase the dose of Levo right now" ... because your thyroid has shown itself to be incapable of making enough T4 /T3 for you ,no matter how high your TSH goes.

Not withstanding what i said previously about "GP's making too big dose changes" .. i hate to say it , but i suspect that a small 12.5mcg increase to 125mcg may not be enough to fix a TSH that increased form 9 to 19 on 112.5mcg , i suspect you may still need another increase after this ... but see how it goes for the next few weeks.

1123ayoung profile image
1123ayoung in reply totattybogle

I absolutely love how you have explained this to me. Honestly you make more sense than the doctor. My brain is super foggy so I’m probably not making much sense myself.

She did say she didn’t want to increase too much to then have to lower again but she does think I will need more.

I can’t think of any changes to my diet, lifestyle etc except I have lost around 3 stone (over 3 years) and i did have covid in amongst it. Someone did mention about age so that’s also maybe why. Suppose I’ll never know.

I really appreciate your help. I am so grateful, thank you xxx

tattybogle profile image
tattybogle in reply to1123ayoung

You're welcome ;)

frankly with your current results , i'm very impressed that you can still manage to spell 'explained ' let alone actually understand anything i've written ... give yourself a medal and get a passing child to bring you a cup of tea and some chocolates at once ... you probably deserve them .

1123ayoung profile image
1123ayoung in reply totattybogle

That sounds like the perfect plan 😁

SlowDragon profile image
SlowDragonAdministrator

Vast majority of patients taking 12.5mcg will cut 25mcg in half

A) because only brand that makes 12.5mcg is Teva and Teva upsets many, many people

B) 12.5mcg tablet is much more expensive to NHS at £12.49 for 28 tablets, where as 25mcg tablets are 95p per 28 tablets

You need to have Vitamin D, folate, ferritin and B12 tested at least once a year

Messing around reducing dose levothyroxine frequently results in vitamin deficiencies

ALWAYS Test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

And once you work out which brand levothyroxine suits you best, always get same brand at each prescription

High cholesterol is directly linked to being under medicated thyroid wise and should improve as levels settle

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Lulu2607 profile image
Lulu2607

On 100mcg bloods I was 9.3 and on 112.5 it has went to 19.4

How come your TSH went up when your levo was increased from100mcg to 112.5mcg?

1123ayoung profile image
1123ayoung in reply toLulu2607

I really don’t know. I was originally on 125mcg and have been for around 5years. Was told I was over medicated before Xmas and told to come down to 100. After more bloods I was told to go to 112.5 and since then I’ve felt horrendous. My doctor never gave any explanation of why this is happening and all of a sudden.

Do you know why? Xx

Lulu2607 profile image
Lulu2607 in reply to1123ayoung

Maybe you tested too soon after changing your levo dose and the increased dose hadn't taken effect? It does take a while for dose adjustments to have a full effect which is why we're asked to check bloods 6-8 weeks after changing a dose.

1123ayoung profile image
1123ayoung in reply toLulu2607

My bloods on the 11th of March were 9.3 and on the 22nd of April they were the 19.4 reading. That was 6 weeks in between exactly. I’ve read about the TEVA. My 12.5 increase was this brand. Would that make you go under or just feel rubbish? Just hope i start to feel better as don’t want my numbers to get as bad as when I was first diagnosed xxx

Lulu2607 profile image
Lulu2607 in reply to1123ayoung

I know Teva doesn't agree with a lot of people but I don't know about it being less effective. There are others on here that are more knowledgeable about brands that may be able to advise. I know getting the levo dose right can take time, particarly as you have to wait a few weeks to feel the full effect. Being patient when you don't feel well is hard I know. Hopefully you'll get your dose right and feel better soon.

1123ayoung profile image
1123ayoung in reply toLulu2607

Thank you.You are right. I do panic when I get like this thinking I’m never going to get better but after posting this and getting everyone’s help and advice it doesn’t just educate me but also makes me feel mentally better so thank you xx

helvella profile image
helvellaAdministrator in reply to1123ayoung

I too had Teva 12.5 to take my dose up to 112.5. This was a few years ago.

I felt unwell - stomach not right was main issue. So I stopped them. And felt better - got my dose increment from other makes thereafter. Splitting tablets or alternate day dosing - tried both and prefer same dose every day.

I avoid Teva levothyroxine.

But other feel that it is the best levothyroxine tablet they have tried. Which makes the overall picture a bit cloudy.

1123ayoung profile image
1123ayoung in reply tohelvella

That’s me stopped them now. I’m back on my original 125mcg. So hopefully I start to see a difference. I am also going to try eating better as my diet could definitely be better than it has been and I want to lower my cholesterol and up my folic acid. Thanks for your help. This forum is full of such supportive and helpful people. After advice on here it really does educate me more and definitely puts my mind at ease as I really do worry when I get unwell like this. Thank you 🤗 xxxx

1123ayoung profile image
1123ayoung

Today I am back up to 125mcg and on folic acid tablets xx

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