Is it normal to feel unwell when carbimazole is being reduced?

[Lisa254]

Hi everyone,

I have had a reduction in carbimazole which started a week ago.

I was doing ok and thinking I was on the up until yesterday afternoon I hit the wall again and feel like I’ve taken a huge leap backwards and gone back to how I felt before Christmas with exhaustion nausea random stomach pains and the lighter shade of grey complexion I seemed to have gained with this illness!! I haven’t really exerted myself this week so I don’t think I can blame it on that!

Is this normal? When I was well back in the summer and I had reductions in carb i didn’t notice any difference.

Thank you 😊

[Rmichelle]

Lol, me again, i know everyone is different lisa with every dose change i have its tge trembles and palps, tired etc, ive had a few more tummy troubles aswell like gassy windy pains(tmi) but also think maybe you have a virus as there is a hell of alot going around, also hypos experience more tummy issues i believe!!

It takes a good 4 weeks for new dose change to settle.😊😊

[Lisa254 in reply to Rmichelle]

Awww think I jinxed myself when I said to you yesterday about remembering how much better we feel over the last month or so 🙄

Yes I have really noticed my digestion changing over the last few months I haven’t had any appetite since the summer and occasionally I feel like I have to sit up straight for the evening to encourage digestion as it’s slow! 😬

It’s so wierd how you can go for months on carbimazole and be absolutely fine then all of a sudden it hits you and your consistently ill 👎🏼

[Rmichelle in reply to Lisa254]

Hey are you still going for accupuncture? I have found somewhere local but no price ranges, how long is your session and where do they put the needles, do you mind if i ask you the cost lisa? How often do you go?x

[Lisa254 in reply to Rmichelle]

Hey yes the lady I see is really knowledgable my appt is normally 45 mins-1 hour she normally puts in 4-5 needles then you relax for 20-30 mins ish its actually so relaxing I’m always starving afterwards.

It’s £45 a session I was going weekly then fortnightly, sometimes every 1 a month depending on her. I have them in different places everytime I go depending on my symptoms I’ve had them in big toe, foot, calves, ribs, arms, collar bones and recently in my throat which freaks me out Incase I sneeze and inhale it 😂

They can put them in to decrease anti bodies too.

When I was suffering with dizziness it was crazy as I’d turn up dizzy and left without any dizziness

The last time I went she said she felt I was heading for hypo I had my bloods done the following week and she was right!

Try it out see if u like it 😊 xx

[Rmichelle in reply to Lisa254]

Thankyou lisa, i am going to try a session next payday-oh the bit in the neck freaks me out as well, im quite protective of my thyroid area-dont know about you but dont even like blanket touching it or anything else, peeing me off today as thyroid is swollen and discomfort and feels like im being strangled-horrid but alot of people get this with hashis hyper swing which might explain why i had hyper symptons of palps and panting like a bloody dog yesterday, your antibodies were low for hashis right? Mine were 880!! Are you ok? Let me guess are you like a dying swan on the sofa .watching the voice.xx

[Lisa254 in reply to Rmichelle]

Yes give it a go see how you get on with it ... I just went with the mind set of I’ll try it once and if it doesn’t work I’ll cross it off my list!! 😂 My acupuncturist didn’t go anywhere near my throat whilst it was inflamed but just tell them what ur comfortable with.

That’s wierd u should say that as I find when I’m my worst I can feel my thyroid pushing on my throat it must be the inflammation from being under attack!!

Yes I have low hashi 45 and low Graves 2.2 when they were tested I have to wait until next month for a retest I’m hoping all these changes have made a difference.

Aw I’m feeling so much better this afternoon thanks how are u feeling today?

Hahaha u got me it’s me +sofa+ cup of hot water with ginger 😷 and the voice oh and my kitten who swear is hyper too tonight I’m so rock n roll on a Saturday eve 🙄 x

[Rmichelle in reply to Lisa254]

Yes its a horrid feeling the tight throat-they do say it is hashis or hypo sympton, im ok today apart from the bloody hashi discomfort and a bit anxious because of throat but hey i will fight this just like you, bring it on.

Good you feel better, im defo going to try accupuncture as it does sound very promising, if someone said to me standing on your head and singing would cure you i would!!😆

Hey we are a pair of party girlies arent we, now where are my fluffy slippers and tartan blanket, cannot imagine going out this time of night and donning a pair of stilettoes-eeks😲 it's keith lemon through the keyhole for me and a dose of liquid iron and a attractive smell of dirty old coins on my lips, ha.💋

Lovely cat on your piccy.

[Rmichelle in reply to Lisa254]

Howdy, i have a appointment with accupuncturist on 2nd march at 2.20, there is a medical practice just around the corner from me and he practices in a private area there. £35 per session not bad-checked his qualifications out and he is a member of british accupuncture assoc.

How are you? I feel pants with hyper symptons im sure my flu virus as triggered hyper symptons i was meant to go for blood test this morning but just felt qute hyper so i have really got to go tomorrow morning as i just wont know. Xx😊

[Lisa254 in reply to Rmichelle]

Hi ya .. aw that’s good news I hope it helps you (and that’s a great price) 😊

Ah no that’s so annoying that u have hyper symptoms now, I can’t decide which is worse hyper or hypo symptoms!! Have u got an appt with ur new or old endo coming up soon? Fingers crossed ur well enough to get ur bloods done tomoz it will b interesting to see what ur levels are compared to how u feel.

I’m not too bad today thanks I have been so exhausted these last 4 days (mainly in the morning) I don’t think I have had this level of exhaustion yet 😬

I’m seeing my gp this afternoon as the endo says I can’t blame my symptoms on my thyroid 🙄 and I’ve just received a letter from him (endo) saying I have been discharged from the hospital and referred back to my doctors for care.. honestly this endocrinology service is so bad!! I’m taking my mum for back up (😂😂 like I’m 5 yrsold!) xx

[Rmichelle in reply to Lisa254]

Good for you,it is your thyroid, you are bordering on hypo. Do not let them give you depression tablets it the disease, be prepared to fight yiur endo is wrong and dont forget you can always self medicate!! Hope it goes well. Write a new post aswell on the outcome.

Got to go tomorrow as i have no idea what my levels are like due to hospital loosing my bloods from 19th january-i reckon flu virus triggered levels.

Ooh dont be fobbed off by gp and you are not a emotionally inbalanced either. Kick some ass girl. Back up is always good, i would take my mum but she would just complicate things, she is 78.xx

[Rmichelle in reply to Rmichelle]

Dont forget they will day levels are in range- you say they are in clinical range but they are not optimol for you, youre frees are low range and should be mid to high to feel good and tsh is to high it should be around the 1 mark. It is not a one size fits all-remember one mans medicine is another mans poison-dont cry hold it for when door closes.xx

[Lisa254 in reply to Rmichelle]

Thank you for ur great words of wisdom as always 😊 I went in armed!!

Ah my god my poor gp that was the longest appt!! 😂 no mention of antidepressants as he thinks a lot of my symptoms are side effects of carb and thyroid ...My gp is actually really nice and I do get on with him (he’s abut the same age as me so makes it abit easier).

So he wasn’t too worried about me being discharged from the endo he was alittle shocked when I gave him the letter but said it maybe because I have been euthyroid since July....and he was confused why the endo didn’t drop me to 5mg every day as I’m near hypo....Anyways he thinks my iron levels are out of kilt which is making feel like rubbish and look like I’m about to pass out (a lighter shade of grey..death as my mum described me😂 I knew she wouldn’t keep quiet for too long!) so I just need to have a blood test done to check. Apparently I was borderline deficient in my blood test back in sept but it hadn’t been checked since! These normal ranges are ridiculous huh!

Fingers crossed u can get ur bloods done tomoz is there anyone who could take u? I used to get someone to wheel barrow me down to the docs when I was really bad! Ha xx

[Rmichelle in reply to Lisa254]

Ha go girl!! Good old mum putting her topennith in-great!! Makes a difference with support, getvthem iron panels done- i am very low on iron ferritin as mine were just 10 below range 3 weeks ago so i am supplementing with floravital liquid £10.99 from boots, i tried 2 lots of tablets from gp but left me in agony cramped up-horrid, my b12xwas over range and folate low range so i need to supplement that aswell.

Im so glad your gp is on your side itvis so much easier isn't it. So what did he say about your levels andcwhat dosage are you to take lisa?

I have been advised from admin bantam to hold back on bloods yet as she says you can get a hangover effect of hyperness from having flu virus, she is going through the same at thevmoment- hold outna few days then test.xx

[Lisa254 in reply to Rmichelle]

I felt like I was 12 again taking my mum with me but I just wanted someone else there and to know I’m not making this illness up! He said to stay on the dose the endo said for another 4 weeks and then retest as it’s too soon to tell as I only decreased last week.

Do u know how ur low iron levels make u feel? Do they wipe you out for a couple of hours or the day and take all the colour out of you? Ah that’s great thanks I have made note of the liquid from boots We do not need any more unnecessary symptoms hey!

Ah ok that makes sense you want to get a good reading hopefully it will calm down over the next few days are u feeling any better this afternoon? xx

[Rmichelle in reply to Lisa254]

Low iron is serious stuff, symptons are palpitations, irregular heart beat, exhaustion, breathless, poor memory but i felt always tired and limbs felt very heavy, complete tiredness, and around a period it was 10 times worse everything was too much effort and also could not concentrate as much butvi had felt better on the iron until this bloody virus, yiu will notice a difference with it and you may have to try a few different forms of iron to find the right one, ha you can smell like dirty old copper pennies aswell😊

Yes makes sense for you to wait aswell-you still on 10mgs then or 5?

[Rmichelle in reply to Rmichelle]

Just read again sorry you are on 10mgs still, will you eat liver? I have that once a week aswell as dark green veg-hopefully soon we will be like wonderwoman and the bionic woman- ill let you have the hotpants and i'll have the flying suit, ha-what a sight that would be -hey!!

[Lisa254 in reply to Rmichelle]

Haha oh god what is this illness turning me into ..a dirty old copper penny smelling professional day time tv watcher sofa lounging expert hippie chick 🤦🏻‍♀️hah heeeeeeelp !!

Ahh ok yes I have all that apart from the period bit as my body still trying to sort itself out after coming off the pill! Will see what my bloods say

I’m on 10mg one day and 5 mg the next That’s what the endo put me on last week xx

[diogenes Remembering]

Who authorized your reduction in carbimazole and on what grounds? If TSH only then this is not a good measure of thyroid function under carbimazole. You need TSH, FT4 and FT3 to be monitored to get a complete picture.

[Lisa254 in reply to diogenes]

Hi Diogenes ....The endocrinologist reduced it, I have been on titration for 9 months now my last bloods before he reduced were tsh 4.07 ft4 14 ft3 4.8

[Rmichelle in reply to Lisa254]

Hi lisa i know you wont mind me pinching your thread for a min-confused now!!😮

[Lisa254 in reply to Rmichelle]

Go ahead as I’m confused as just going back on my notes I thought I needed to be nearer tsh1 and increase my ft4 to the higher end ( historically that’s where I have felt myself) 😊

[Rmichelle in reply to Lisa254]

Soo confused-ha i done the same, i felt alot better in october as my tsh was just above 1, and my frees were about right but was told to reduce as 10mgs would send me over-so 5mgs implemented and that was too much, ha my head is spinning-all i know is we feel rubbish, we will work this out. Now bloods for me monday-so we will see what is what!!

[diogenes Remembering]

As I said, FT3 is the best measure of treatment with carbimazole and TSH can lag. To me, I'd have kept the original level of carbimazole and tested again later to see if there was any change in TSH. Your FT3 wasn't high in range so it looked as if the treatment was OK.

[Rmichelle in reply to diogenes]

Hi there, i am very much the same as lisa and find this a it confusing on what you have just said, i am also on titration doses and have never stayed on the same dose-ive always had a change every 6 months as per endo!! Im on 2.5 mgs now as my levels were hypo 6 weeks ago, i was under the impression that you had to keep titrating to find a maintenance dose but if it keeps getting changed how do we find it and also if you say remained on a dose of 10mgs or 5mgs that could send us hypo, help im confused and im sure lisa will be too. What dose are you on and how long have you been on it?😨 dont you think tsh needs to be 1 as mine is now 5.60 over range and i k ow i felt better in myself on 10mgs back in october but my levels were getting more hypo-so confused now..

[Rmichelle in reply to diogenes]

For you to remain on a dose surely your levels would need to stay like that and not move?? Wheres mine and lisa's have always changed because of to higher dose so thats why titration? I understand that if youre levels changed then that dose would be wrong? Help

[diogenes Remembering]

Being on carbimazole is riding a rollercoaster. The underlying hyperthyroidism can wax and wane with extreme rapidity but the tendency will be for an increase in the problem over time. Say you have a carbimazole dose that for a while is too high. Your TSH will rise and FT3 go down. If there is too high a dose then this will show itself in low FT3 right down near the lower limits together with high TSH. However the siutation may change and your dose now becomes adequate. The TSH will stay high because of a lagging response, but the FT3 will rise. This is the principal parameter to follow rather than the others. If you are nicely in the FT3 range then I don't see why anyone should be deemed overdosed. Especially if, being nicely in the range and feeling well, I don't see why change should be considered as essential.

[Silver_Fairy]

When I was titrating Carbimazole, I always had TSH, FT3 & FT4 tested, every 8 - 12 weeks. I found if it was less than that, it didn't draw a correct picture of my levels. Therefore any change in dose may have ended up being incorrect.

A week is no time really, to see if the dose suits.

[Rmichelle in reply to Silver_Fairy]

Hi silverfairy, confusing isnt it, i have my bloids done every 4 weeks and every time i have had to reduce dose as frees were coming down and tsh was going higher just like lisa really, but i felt much better back in october on 10mgs but becoming hyper then on that amount, i have never remained on a dose longer than 5-6 weeks without having to change it, i am nowvon 2.5mgs for 6 weeks as i have hit hypo, i am hoping that tsh will get to around 1 and frees mid range, am i correct in thinking that when you are at them right levels then that is the correct dosage?. 😊im sure lisa wont mind me chipping in here as shecwas confused too.xx

[Silver_Fairy in reply to Rmichelle]

Tbh I went more by how I felt, than by where my levels were.

[Rmichelle in reply to Silver_Fairy]

Thankyou silverfairy it is all trial and error isntbit and trying to find the right dosage , you do need to go by how you feel.x

[Silver_Fairy]

How much Carb are you on now? And what was it before?

[Lisa254 in reply to Silver_Fairy]

Hi silver fairy .... yes I normally have my bloods done every 8-10 weeks I had been on 10 mg since beginning of November and now 10 one day 5mg the next .... I thought I had been doing well, small steps of feeling better and on the road to getting back to work but then yesterday and this morning I felt like I did before Xmas I just wondered if this was normal when decreasing 😊

[Silver_Fairy in reply to Lisa254]

I cant say I had anything like that when I decreased. Could it be down to anything else?

[Lisa254 in reply to Silver_Fairy]

Hmm I don’t know I am seeing my gp Monday so I’ll speak with him

Did you feel ill at all whilst on carb?

wish it wasn’t such a bumpy ride!

[Silver_Fairy in reply to Lisa254]

I had most of the symptoms of being over medicated on Carbimazole! So, not one or two specific symptoms, loads of the symptoms of hypo. I didnt know squat at the time about thyroid diseases (nor did my Endo!)

[Lisa254 in reply to Silver_Fairy]

It’s amazing how much you end up teaching yourself and learning from here... When I was told I had an over active thyroid I was like what’s a thyroid 😂

I also have very slightly elevated anti bodies for both graves and hashi though not all endos I’ve seen have diagnosed me as auto immune due to the figures. Since October I have had a mixture of hyper and hypo symptoms but because my tests were coming back in ‘normal range’ I have always been told that I can’t blame my symptoms on my thyroid! The problem is all my other bloods have all come back normal 😬 who knows!

[Silver_Fairy in reply to Lisa254]

I have both Graves and Hashimoto antibodies.