Medication is not working

[snowmoon1]

Hi,

My boyfriend is on 50mcg levothyroxine. There were some improvements such as eyebrow started to grow back, no constipation. However, it seems like it works for a bit and then he starts feeling like he's not taking anything, although he's on medication. It hasn't helped with fatigue, muscle pain etc..

We were thinking that the dose is too low or he's just simply not going to get better at all. We have to wait for the 3 months follow up blood test.

I appreciate any suggestions. Thank you.

[Bearo]

Dose is almost definitely too low - it’s a starter dose. The dose should be raised as tolerated about every 6 weeks. If you check the PIL - leaflet in the Levo box - it may well give guidelines for timing the next blood test. You could show this to the GP and get the blood test brought forward.

Also, make sure to take it with water on an empty stomach and away from other food, supplements and meds.

Folate, ferritin, B12 and Vit D are often low with thyroid disease and they should be tested, along with the TPO antibodies test.

[snowmoon1 in reply to Bearo]

That's very useful information, thank you very much for taking your time to respond!! I will go and check the leaflet.

[snowmoon1 in reply to Bearo]

Just to refer back to the PIL, if you don't mind. He takes levo from Wockhardt and it recommends that 'Your doctor may increase the dose you take every 3-4 weeks by 50mcgs until your thyroxine levels are correct.'

Do you think the follow-up blood test can be brought forward even more? Or is it best to at least wait for 6 weeks?

And another question about blood test. Is it a must to have folate, ferritin, B12, Vit D, TPO antibodies test done with every follow-up blood test? The reason why I am asking and using the word must is because on the 2nd blood test the gp only tested for Vit D, Ft4, TSH but not the rest. I think I didn't mention to her on the phone to test for everything as I assumed it'll be done to compare the new one with the 1st blood test result.

[tattybogle]

It is extremely common , even 'usual ' to feel improved after a week (ish) on a starter dose , and feel better for a few weeks , and then slump down again to feel nearly as bad as before you started . Doctors should explain this to people so they know what to expect. Otherwise people think 'it's not working'... when in fact it's rather more like proof that it is working .

Initially the body get's the benefit of the extra, but then the very complex feedback loop of the HPT axis comes along to try and rebalance things ,and as a result lowers the TSH a little in response to the 'extra'.. which then has the effect of telling your own thyroid (which has been knocking itself out trying to keep up production before diagnosis) , to "have a little rest" ......with the end result of less natural thyroid hormones again. .... or at least that's a simplified version of what we understand as one explanation for this very common effect when starting to take replacement thyroid hormones.

[snowmoon1 in reply to tattybogle]

Thank you so much for your answer It makes so much sense now what is actually going on.

[tattybogle in reply to snowmoon1]

Once dose is increased ,( which should ideally happen earlier than 3 months , as 6 -8 weeks is usually considered long enough for TSH levels to stabilise on a new dose )..... you can expect a similar pattern to happen ie , better for a bit then less good again , until the correct dose is achieved. But hopefully with longer period of feeling better and less bad when it drops off.

In theory.... once on right dose , it stay's feeling OK.

I only ever felt about 75% better , but never 100% , however some people (allegedly, the majority ) do eventually feel alright again on Levo.

I'd try and get the repeat blood test done in 6-8 weeks rather than 3 month's if i were you, the usual full replacement dose is somewhere between 75-150mcg , but can be more for some people.

[snowmoon1 in reply to tattybogle]

Wow, thank you so much. That's just such a profound information to be aware of.Your suggestion sounds reasonable. I really thought you had to/must wait 3 months to repeat the blood test. Thank you very much! I will discuss these things with him.

[tattybogle in reply to snowmoon1]

I would say that 'sometimes' it does make sense to wait longer than 6-8 weeks to repeat bloods....once you are near the right dose according to bloods ie. TSH in the region of 1 ish (or below) and fT4 in the top half of the range ....then it does make sense to wait longer ,

for example :- after i'd been on a stable dose for years , i found that a slight adjustment of 12.5mcg had me feeling different things every week or so for about 10-12 weeks, until i was sure what my new 'normal' felt like on that dose... and i'm glad i didn't jump to conclusions too soon about how i felt on that dose, because blood tests really don't give us the answers , they are just 'a clue'.

But..... when just starting on 50mcg , i'd want to get on with getting to near the full dose as quickly as possible. The 'start at 25/or 50' thing is just so it's not a massive shock to a system that's become used to going slow. It's expected that the dose will then be increased.

Some newer guidelines are now saying that it's OK to start patients straight on full 100mcg ish dose , as it saves time ( and money !).

I'm not sure i agree with the wisdom of that , i think that's going a bit too far , some people here have found going straight to 100mcg a bit of a shock , and that might ultimately make it take longer to find the right dose for that person.

But whatever else ,you do always have to wait 6 weeks on a daily dose before the TSH test will tell you anything useful about that dose, because TSH can take a while to react and then settle down again when a dose is changed.

I totally understand how frustrating it is to wait and wait, while still feeling naff, but some things you just can't rush , it takes the body a long while to become short on hormone , and then he cells all get used to functioning like that.... so it takes a similar amount of time to adjust itself back to functioning on a higher level of hormones

[snowmoon1 in reply to tattybogle]

Sure, makes sense. Thank you for sharing your personal experience. I definitely agree with you on the initial low dose start but I am really grateful for you to pointing out that no need to wait forever so to say to increase the dose to find one's optimal dosage. Thank you very much

[SlowDragon Administrator]

Typically dose levothyroxine is increased slowly upwards in 25mcg steps

Bloods should be retested 6-8 weeks after each dose increase

Guidelines on eventual dose required is likely to be at least 1.6mcg per kilo of his weight

Essential to test vitamin D, folate ferritin and B12

[snowmoon1]

Thank you very much for this piece of information! It annoyed me so much that we have to wait for months to repeat the blood test. I didn't know and I also assumed that you must wait 3-4months for the follow-up blood test as this is what the paper stated.