shall I reduce levothyroxine based on these sym... - Thyroid UK

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shall I reduce levothyroxine based on these symptoms and results?

msmono profile image
11 Replies

Hi

I tested because Ive been feeling so tired I could barely walk to work (also very achy). Ive also been sleeping badly, stressy and getting hot - worse at night (not menopause)

Ive been stable and reasonably symptom free on 110 levothyroxine for around two years (with some blips). My antibodies have halved in this time but my T4 has overshot and I wonder if this could be causing my symptoms.

(iron and b12 have finally moved over the 50% through range) I also take D,K2 and selenium and am almost gluten free.

These are my results

TgAb 406.8 (0-115)

TPO Ab 31.3 (0-34)

TSH 0.05 (0.27-4.2)

T4 23 (12-22)

T3 5.3 (3.1-6.8)

Shall I just reduce my Levothyroxine?

why have I suddenly overshot?

Thanks for any advice

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msmono
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SlowDragon profile image
SlowDragonAdministrator

was test done early morning and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

Have you recently lost weight

What are your actual recent vitamin results

Gluten Free needs to be strictly gluten free to be totally effective

msmono profile image
msmono in reply to SlowDragon

Yes to test being done early morning, yes to same brand for past three years and I’m confident at interpreting my vitamin results from advice on here. They’ve been slowly climbing and are now over 50% through the ranges from hovering just above ‘normal’ three years ago. No weight loss. I am wondering if lower anti- bodies means thyroid functioning a bit better. Is this possible?

Thanks 😊

tattybogle profile image
tattybogle

is that "110" levo a typo (or are you alternate dosing some days to get that dose)

previous posts indicated you were back on 100mcg .

3 yrs ago when put up to 100mcg 50mcg ( private diagnosis due to TSH still in range ) , you had overmedication symptoms and fT4 went over range (about 25 ish) . So reduced to 75mcg .. felt ok for a bit , then felt undermedicated a few months later.

So you were going to ask for NHS prescription to go back up to 75/ 100 alternate.

so i assume you went back up to 100mcg at some point after that.

your current symptoms do sound like "a bit too much levo' to me . I've been there and bought that T-shirt ....so i'd go with your gut and try a small reduction for a while and see if it improves things again .

If you reduce , do give it long enough to settle in properly before making you mind up how it feels .. my experience is that how i feel for thte first 4/5 weeks after a dose reduction is not a good representation of how it will feel from weeks 5/6 onwards once th body has adjusted itself .

personally i think adjusting by 25mcg/day is too big for many of us.... 12.5mcg /day is the most i'd usually adjust by.

msmono profile image
msmono in reply to tattybogle

Thanks. Yes I’ve been on this dose (yes alternating 100/125) I thought for two years but also having memory problems (which are being investigated) and getting in a right old muddle sometimes 😏 Thanks for the reminder to give any change long enough - id forgotten about that aspect. I forgot to say my blood pressures up a bit too. I actually have low blood pressure (just under normal) and its been up a couple of bars (still ‘normal’) for two weeks running now. I understood that my dose would gradually increase and eventually take over thyroid function? Can thyroid function improve though with a reduction in anti- bodies? 🤞🏼

tattybogle profile image
tattybogle in reply to msmono

I understood that my dose would gradually increase and eventually take over thyroid function?

Your thyroid function has already been taken over (to a very large extent) by levo once you are taking a reasonable dose eg . 100mcg .....and the TSH is very low .

No / little TSH stimulation to the thyroid, means the thyroid is not being 'asked' to make much / any T4/T3 at that point anyway .

So there is no reason for the dose to be 'automatically' increased from there on , as you are already "taking it instead of making it "

Can thyroid function improve though with a reduction in anti- bodies? 🤞🏼

No .

Any damage that the immune system has already done to your thyroid ...is done. that part of the thyroid won't get better again.

If the function of the thyroid had been reduced to eg 50% by autoimmune damage .. then it won't be able to function at 75% again ,even if no more autoimmune damage happens .

TPOab (ThyroidPeroxidase antibodies) are not what 'does' the damage to the thyroid . they are a sign that it 'has' happened .

The immune system itself damages the thyroid (lymphocytes infiltrate the thyroid and cause fibrosis in some parts , and those fibrous parts can't make enough T4 anymore ....more immune attacks would damage more of it over time)

Thyroid Peroxidase (the substance , not the antibodies) is contained within the thyroid. When the thyroid is damaged, some Thyroid Peroxidase spills out.

Thyroid Peroxidase antibodies recognise this and attach to this spilled thyroid peroxidase rather like labels saying "clean this up , it shouldn't be here" and then some other part of the immune system comes along to deal with it.

So if previously raised antibody levels are low (and stay low) . then it is safe to assume that no more damage had happened recently ... but it doesn't follow that those already damaged bits have got any better.

( and even if they could 'get better'..... they wouldn't be bothering to make any / much T4/T3 while your Thyroid Stimulating Hormone was kept very low with Levo .. because they are not being 'asked' to make any )

tattybogle profile image
tattybogle

just to clarify something in case you are not now aware of the implications for your fT4 results ~ i noticed on a post a couple of yrs ago that you said you had "missed 2 doses (of levo) prior to test ,to make sure"

a gap of longer than 24 hrs from last dose levo will give a false low fT4 result.

So just checking you are now testing correctly @ 24 hrs ,not 48hrs.

As for why has it happened ......Improving your vitamin levels may have allowed better conversion of T4 to T3 so that could explain needing a bit less levo.

(* Edited since seeing dose was increased. You have increased dose from 100 to 112.5mcg .. that would explain the fT4 going over range and any overmedicated symptoms (which can be very diverse) , and if overmedication IS what is causing you to feel rotten, then weight loss would be expected *)

Or it could be just a hashimoto's "swing" ( thyroid gets a bit more damaged by immune system and so for a while more of the ready made T4 that is stored in it, is released from the bits being damaged ) which is causing temporarily higher T4 /T3 levels for a few months . If this is the cause, you may eventually need to increase again at some point if levels end up lower /symptoms of undermedication return.

My fT4 often goes off for little wanders over the range for several months at a time , despite no change in dose .

Sometimes my fT4 ends up very over range and i feel fine ...and sometimes it is only very slightly over , but i get overmedicated symptoms ..... so just going by fT4 level doesn't help me figure out what is going on , i need to look at TSH, FT4 * AND symptoms to tell if it's really overmedication symptoms .. which (for me) include bladder symptoms .. not all symptoms of 'slight overmedication' are easy to recognise...my GP's had me going for CT scans and endoscopy / colonoscopy . kidney ultrasound , before a more observant GP asked me to hold my hands out ( very fine tremor in fingers) and figured out that my feeling so bloody awful and loosing a bit too much weight was all due to being on a bit too much Levo for several months . (*obviously fT3 would be more helpful but NHS/ skint lol)

Going through the menopause also reduced how much Levo i need. I used to take 150mcg for about 15 yrs .. a couple of years following the menopause i became overmedicated and reduced to 125mcg .. and about 3 yrs after that fT4 went way over (but felt ok )and i reduced to 100 .. that was too little , so 112.5mcg has seemed about right since then .. last summer i experimented with 125mcg again, which was good for a few months but then not so good , so went back to 112.5mcg for now . ( my very over range fT4 eventually came down again by itself ,apparently unrelated to those dose changes)

if i ever notice signs of "my personal" overmedicated symptoms popping back , i will try 100mcg.

msmono profile image
msmono in reply to tattybogle

Thank you so much for such detailed responses. I guess I was hoping that anti- bodies reducing was a good thing. Well the Medichecks doc said ‘your antibodies continue to reduce which is good’. The lack of weight loss is the only thing making me think I might not be over-replaced. However, I do have a very difficult relationship with food and struggled with being a little overweight most if my life. In the last three weeks, my appetites lessened but only a little. You mentioned bladder and I don’t know what the issue was but I’ve been having to wee constantly and put that down to recent uterine prolapse as sometimes it presses against my bladder. Just checked my hand and there is tremor. Anyway I’m going to try a slight reduction and thanks again for the info about thyroid workings which ill have to re read to take it all in 😊

tattybogle profile image
tattybogle in reply to msmono

yes .

needing to wee constantly but 'not much there' and not much sense of relief when i did , bladder felt constantly tense / uncomfortable ...a bit like having cystitis without the burning pain if that makes sense .

obviosuly a prolapse wont help ... but if you hold arm out straight in front of you , palms down . fingers loosely outstretched, and you can see a very fine tremor in fingers then that is usually a pretty reliable sign of overmedication.

None of the symptoms of overmedication are there for everyone .. it's like everything 'thyroid' ~ we are all a bit individual. Eg my heart rate didn't go up ( well not so i noticed anyway ) but i was extremely jumpy and sensitive to sudden noises . as though my startle reflex had been turned up to 10.

But your overall picture and the ?bladder .. and the fact you've put Levo dose up to a bit higher that it was when you previously had overmedicated symptoms and over range fT4 and the fact that fT4 is over range again now (albeit only by a little)

~ this all says to me you've put your dose up a bit too high .. and you may have been mistaking symptoms of 'a bit too much' for symptoms of 'not quite enough' when you put it up.

it would help if you had blood results from at least 6 weeks on 75/100

and same for 100mcg for us to look at .

without seeing them it's hard to hazard a guess how much would be best to reduce to .. so without that info i'd just say try 100mcg again and give it 6 weeks, then get an a.m. test , 24hrs after last dose so you know where you are.

Stevenev225 profile image
Stevenev225

They have just put my dose up to 75 mg every day.. I've been very unwell with stress and anxiety and not sleeping , I'm on sleeping pills which aren't doing as lot either ..

Whiskers3 profile image
Whiskers3

It's definitely worth discussing with an endocrinologist. I tried cutting down my Levothyroxine to 75mg and adding T3 under the guidance of an endocrinologist, who is a renowned expert in his field and eventually he advised me to go back to what I was on before, 100mg. I also tried HRT, but have now been diagnosed with moderate to severe M.E./CFS.

TwoAlaskans profile image
TwoAlaskans

Sure sounds like your levothyroxine supplementation is too high.

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