Struggling on 25mcg dose Levothyroxine will it get better?

[ockerdoc]

I’ve been on 25mcg for 2 weeks now and I feel the worst I’ve ever felt. For the first 3 days was the most normal I’ve felt in a long time but it’s just got gradually worse. I can’t even walk up a hill without feeling out of breath and light headed. My resting heart rate has come down to 48 from 54 and I’m not even exercising. I have terrible back ache aswell that has appeared from nowhere and obviously I’m dealing with the worse constipation. I’m supposed to be on this dose for 3 months. I’ve got an appointment with the GP on Monday to ask her to raise it. Do you think it will improve in the weeks ahead? Is it too early to change to 50mcg? Any advice much appreciated thanks.

[greygoose]

No, it's not too early. At your age your doctor should have started you on 50 mcg straight away. 25 mcg is for the over 60s, and it's too low for most of them.

What happens is that the low dose is enough to lower your TSH a little, but that means that your thyroid lacks stimulation to produce hormone, so reduces output, and the 25 mcg is not enough to replace it. So, you end up more hypo than you were to begin with. So, you won't improve on this dose no mater how long you're on it.

[ockerdoc in reply to greygoose]

Thank you grey goose yes that’s kind of what I thought. I’m going to ask her to put me on 50mcg on Monday I don’t think I can cope with this for the next 2.5 months. I’m going on holiday around Italy soon and feeling like this would be a nightmare.

[greygoose in reply to ockerdoc]

No, there's no reason why you should put up with it. Retesting should be done 6 weeks after starting levo, at this stage. Three months is far too long. Your doctor is either very ignorant about thyroid, or she's a sadist!

[tattybogle]

i agree.. i never had the 'pleasure ' of starting on 25mcg as i was started on 50mcg , and i needed increase that within about 7 wks .. as on 50mcg i only felt ok again for about a week or two , then back to pretty rubbish .... so i can well understand how 25mcg for 3 mths could do more harm than good for some people.

25mcg is a tiny dose, but it's big enough to fiddle with the settings of your HPA axis. meaning it's quite possible you have lower T4/ T3 levels now than when you started.

nowhere in any guidelines is 25mcg recommended for otherwise strong healthy people .. it's only recommended for people over 65 , or people with heart problems , or people who have been left extremely hypo for a long time for whom the shock of suddenly higher levels of thyroid hormone could put a strain on the heart.

in all other circumstances ,NHS guidelines say 50 mcg is the recommended dose to start with.

also the patient information leaflets : eg Accord brand says:

Adults : rec starting dose 50 -100 ... may increase by 50mcg every 3/4 wks .

Adults over 50 : rec starting dose no more than 50mcg ... may increase by 50 mcg every 3/4 wks

Adults over 50 with Heart problems : rec starting dose 25mcg ... may be increased by 25mcg every 3/4 wks

~~~~~~~~~~~~~~~~~~~~~~~~

There's no point retesting after just 2 wks .. you'd need to wait at least 4 and preferably 6 before a test was in any way informative about your new levels of fT4 / TSH .. but i'd argue that since 50mcg is the rec. starting dose , you don't need retesting on 25mcg anyway...

.... your body has been given a couple of weeks of 'gentle run in' ( which was probably not needed in your case anyway) so even if you did need a very low starting dose ,, it would now be safe enough to increase to 50mcg since you have had no adverse reaction to the stimulation of 25mcg .

So i'd try asking for a prescription for 50mcg , and to be retested once you've been on 50mcg for at least 6 weeks.

Realistically you might not feel great for long on 50mcg either , but i doubt it would be worse than 25mcg .

[ockerdoc in reply to tattybogle]

Thank you tattybogle yes I’m thinking the same I’m going to ask for 50mcg then re-test myself privately in 6-8 weeks see where I am then go back to her with the results if I need upping to 75mcg .

[DippyDame]

Yes! It will get better once you are correctly medicated!

25mcg is a rediculous starting dose for an otherwise healthy adult

Your GP is clueless!

50mcg is the starter dose.

You felt briefly better when T4 was introduced because the body immediately recognised it as something it needed....and called yippee!

However it soon realised 25mcg was merely a token gesture and wasn't enough so it's cry for help was to throw symptoms at you to get your attention...to increase the dose!.

Re test after 6 weeks( to let the dose settle in the system) and add another 25mcg levo...repeat until you feel well!

Don't suffer...see your GP on Monday...request increase to 50mcg and hopefully, in the interim, 50mcg will be enough to allow you to enjoy your trip to Italy before further increases are required

In this instance it will be fine to increase immediately.

[ockerdoc]

That’s great thanks DippyDame yes I’m gonna start taking 50mcg from tomorrow morning with what I’ve got left then hopefully get 50mcg prescription off the GP Monday.

[TiggerMe Ambassador in reply to ockerdoc]

You could also ask to be given 2 months worth at a time so you have plenty for your travels if you need to up things whilst away... expect you have already been told about sticking to the same brand if it suits you as they have a habit of swapping brands when changing the dose size which is another curve ball 😕

Perhaps a pill cutter would be a good thing to pack also if they give you 50's so you can increase by 25's 😉

[ockerdoc in reply to TiggerMe]

That’s a good idea thanks Eeyore I’m using Wockhardt 25mcg, I seem to be ok with that brand as I’m not lactose intolerant. Do they do 50s? If not I might just ask for the 25s and take 2 at a time.

[TiggerMe Ambassador in reply to ockerdoc]

Wockhardt only do a 25mcg I think I'm right in saying... also I wasn't dairy intolerant until I started taking Levo it has the ability to turn off your stomachs production of lactase as of course it would usually go through your stomach in such doses when produced by your thyroid! So worth bearing in mind over the coming months if you start reacting to things you have always eaten (took me ages to work it out!).... most tablets contain lactose too 😳

[TiggerMe Ambassador in reply to ockerdoc]

If you need to make a decision at the pharmacist's it's good to have some idea which might be the best option for you.... I think Accord is quite common and generally well received 🤞

Helvella's handy chart

[ockerdoc in reply to TiggerMe]

That’s great thanks Eeyore it’s really appreciated, I’ll probably try the accord then 🤞

[ockerdoc]

Right ok thanks i’l keep an eye on that then. I’ve actually lessened a lot of my dairy intake lately and pretty much gluten free.

[HeartWoman]

I was started on 25mcg and had a short time of feeling better and then felt as bad or worse than before. Went to 50mcg and maybe a little longer feeling okay. Then to 75mcg and then same thing. I just started 100mcg today, so hoping the better will become more and more. It is the most grueling experience of increasing and waiting.

[ockerdoc]

Thank you yes it really is. It gives you a glimpse of how good you could feel then takes it away from you. Hopefully when you’re on the right dose you’ll back to almost 100%. 🤞

[HeartWoman in reply to ockerdoc]

Completely agree! You think you have finally arrived only to be tossed back into the "ocean of dread". Hopefully each increase gets us to the shore for good.