tsh too low on levo dose: Hi, I was trialling... - Thyroid UK

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tsh too low on levo dose

WeeB profile image
WeeB
15 Replies

Hi,

I was trialling an increase of levo from 125 to 150. My tsh dropped from 1.6 to 0.09 ( range 0.27-0.42) and gp put me back down to 125. My t4 went from 22.5 just above normal range ( 12-22) to 25.5. Gp didn’t test t3 this time ( or the results aren’t back for it ) but my previous t3 was 3.6 when it’s usually around 5 and i’ve been feeling horrible for a long time( range is roughly 3.1-6) so that’s why i trialled the 150. However i don’t know if i should be worried that it was at 0.09. i have been having light chest pain/pressure but i’m not sure if that’s chest wall pain or actually heart pain . my heart rate is fine and no palps. I have been talking faster than normal . Am i ok to just switch to 125 or do i need to hold off taking any levo for a while or perhaps a lower dose than 125 . i am already on beta blocker for migraine 40 mg a day so i’m hoping that’s helping to up my tsh ( since its a treatment for hyperthyroid anyway ) . Or should i call a different gp to double check what to do?

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WeeB
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SlowDragon profile image
SlowDragonAdministrator

i am already on beta blocker for migraine 40 mg a day

Looking at previous posts, are you still on propranolol

This will lower uptake and conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

you can not suddenly stop propranolol

It must be weened of incredibly slowly

Tight chest can be low iron/ferritin

Request full iron panel including ferritin

Plus vitamin D, folate, B12

WeeB profile image
WeeB in reply to SlowDragon

thanks SlowDragon, so are you saying i don’t need to worry too much about the 0.09 number , like it’s not hyperthyroid level and i can just go back on 125 ? My iron is ok , it’s on the low side but not under , my haematologist prefers it that way because i store too much iron in my blood. I say it’s ok , but for all i know , my constant tiredness is because of how low they keep my iron levels. i’ll see about getting the rest tested again thanks .

SlowDragon profile image
SlowDragonAdministrator in reply to WeeB

First step …test TSH, Ft4 and Ft3 together

Looking for Ft4 and Ft3 at similar percentage through range

you need to look at improving conversion rate of Ft4 to Ft3

Currently very poor conversion …..most likely because of propranolol

Is your hypothyroidism autoimmune

What are your actual iron and ferritin results

WeeB profile image
WeeB in reply to SlowDragon

yea i’ve been suspecting propanol and conversion an issue for a while . Just don’t think i can come off it just now . Gps know nothing about propanolol impact or reading thyroid levels of tsh t4 and t3 together , mainly only work with tsh guidelines and have refused me a referral to endo for more specialist advice .

i don’t have my current iron levels , i think he said 55 but didn’t give me the range , he said my transaturation was a bit high so he wanted me to donate blood . i’m not allowed to take iron supplement without their guidance .

hopefully the t3 was done last week and the result is just late but don’t know why it would be late , gp may no have requested it . i’ll check .

thanks

SlowDragon profile image
SlowDragonAdministrator in reply to WeeB

If it was NHS test, they very rarely test Ft3

I was stuck 19 years on propranolol….more on my profile

Only reduce by 5mg at a time, then wait 3-4 weeks before reducing again

greygoose profile image
greygoose

It's not a low TSH that makes you hyper, it's very, very high thyroid hormone levels: T4 and T3. TSH is pretty much irrelevant, it just follows the thyroid hormone levels, but doctors don't know that. What he should be worrying about is your low FT3 and your high FT4 (because you're not converting it). Doctors are so incredibly ignorant about these things that we have to guide them. Ask him to give you a different beta blocker that won't affect your conversion because you really do not want your FT4 that high long term.

WeeB profile image
WeeB in reply to greygoose

Thank you for this , i need some solid direction when talking with gp and this has given me it .

WeeB profile image
WeeB in reply to greygoose

i’m actually thinking even 125 has been too high for me as my t4 has been sitting right at top of range of a bit over since i’ve been on 125 . i’m going to ask again for referral to endo but they will likely say no . and defo need propanolol gone as it’s just complicating everything . although gps totally deny this every time i mention it .

greygoose profile image
greygoose in reply to WeeB

It's not so much that 125 mcg is too high for you, it's that you're not converting it to T3 so it's building up. Increase your conversion and the FT4 level will go down.

Just reread your post and notice this:

. i am already on beta blocker for migraine 40 mg a day so i’m hoping that’s helping to up my tsh ( since its a treatment for hyperthyroid anyway ) .

Well, the beta blocker is obviously not going to raise your TSH, and wouldn't do so anyway without affecting your Free levels.

TSH does not control the thyroid hormone levels, it follows them. So, they only way to raise your TSH would be to reduce your levo to a point that would make you ill. In fact, if it's been low for a long time, it might never rise. But that doesn't matter. We really don't care about the TSH.

One of the reason beta blockers are given to people with Graves' is not to raise the TSH but to reduce conversion of T4 to T3 so that they become less hyper. But it's the T3 the important number, the active hormone, the TSH is not important - it's an indicator, not an actor.

Does the beta blocker help with the migrains? They could be a hypo symptom and increase the FT3 might do more good than the beta blocker.

WeeB profile image
WeeB in reply to greygoose

I’m not sure the propanol is making a massive difference to my migraines anyway , i suspect they are more linked to either hypo or perimenopause since they kicked off 3 years ago and reduced significantly when i started hrt . problem is i started hrt and propanol at the same time so didn’t know which one had helped the migraines . i then realised this and came of propanol in december to test it and my migraines stayed away for about 6 weeks , then my hyper talking and mood changed , anxiety went up in mid january , then my headaches returned around february so assumed coming off propanol had done all this . But now back on propanol , headaches are not helped . So that makes me think there is more to all my symptoms like fluctuating hormones . On top of all that i still can’t lose weight and i’m shattered all the time with bad memory and concentration and constant joint pain . All the while t4 high and t3 low . So i defo want off propanolol so i can eliminate that question but i think perimenopause fluctuating hormones is playing a role in some symptoms on top of bad conversion. I doubt i’ll get a resolution anytime soon , especially without a good endo to help and monitor full bloods .

Cavapoochonowner profile image
Cavapoochonowner

Hello there, reading your story is like reading my own.Thyroidless since June 2022,removed due to graves disease.I was OK for a while then a blood test for something else showed a TSH above 10 but high in range T4 and low T3.I am having conversion problems too.I was referred back to endo who increased my levo(it's all in my profile if you care to read).He kept increasing it over a number of months and finally discharged me back to Gp when he was happy with TSH and T3 came low in range,but T4 is over range so I'm not really happy.I am feeling effects,jittery, twitchy,racing thoughts, like you talking fast(a bit embarrassing when I think about it,I must wear people out).I have now done my own bloods and am reducing levo myself. I want to be in range and hopefully I will feel better.I too am on proprananol for migraine(20mg 3x a day since before my operation).I too know it negatively affects conversion so stupidly tried to reduce by half but could only last a day(racing heart,jittery,couldn't sleep and migraine aura only).My plan now is to get all my vitamins optimum(I used medichecks and my vitamin D was low)and reduce my levo slowly until my T4 is in range , because I have no chance of coming off proprananol until I'm no longer overmedicated with symptoms.

Then when T4 in range I can slowly try to come off proprananol to see if it helps conversion. Unfortunately I think this will take months rather than weeks and I'll have to do private testing.

Also I am trying to make sure I eat enough as my appetite is poor and I have lost a couple of pounds ,and not eating enough calories can also negatively affect conversion. Those are my plans to try and help myself.They may be of use to you although we are all different. Sending best wishes.

WeeB profile image
WeeB in reply to Cavapoochonowner

Hi , thanks for your reply. I can relate with the racing thoughts too . My mental health symptoms have been so intense i have been referred to be assessed for adhd at 45. Not sure anything will come of that though . I just know i’m anxious and wired all the time yet zero energy and could sleep at any time. Gutted my headaches have all returned too but not surprised with how stressed i am with all the other symptoms , not sure propanol has helped them in the past as it could well have been my hrt that reduced them previously . i’m just assuming everything is linked back to all my hormones and vitamins not being balanced , from thyroid to perimenopause to b12 etc . It’s a constant battle to figure it out as my symptoms fluctuate throughout every month and year .

Cavapoochonowner profile image
Cavapoochonowner in reply to WeeB

I forgot, one thing I'm going to do today while I feel in the mood is to ring doctors and see if I can have another type of beta blocker which doesn't interfere with T4 to T3 conversion.Once in A and E when I ended up with 5th migraine in as many weeks and fast heartrate, they gave me bisoprol(I think).That's how I started on beta blockers to prevent migraines.I'm going to check on Internet and on here first,so I get myself straight,then I will ring and ask.Wish me luck.

Rabbittail profile image
Rabbittail

I think you should get a second opinion at the doctor and I would recommend to come off beta blokers if possible or replace with camomile tea etc good luck x

WeeB profile image
WeeB in reply to Rabbittail

Hi , my beta blockers were for migraines rather than anxiety but yea i defo want off them . As for chamomile tea , i already drink it twice a day along with decaf everything and magnesium and saffron supplements etc . Helps but not enough.

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