Levothyroxine trial: I’ve had a month of... - Thyroid UK

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Levothyroxine trial

Mag999 profile image
Mag999

I’ve had a month of levothyroxine 25 mcg. The first 2 days my muscles relaxed for first time in 6 months but since then I’ve gone downhill. I’m now in a lot of pain head to toe muscle and bone aches, can’t sleep but can’t talk to gp till next week. My question is can I just stop or should I persist for the next week till I can speak to gp? I’m thinking it is just too low a dose but am also concerned I’m just on the wrong track. I have low t3 but it is still in range, although people on here have said it’s low enough to warrant treatment.

11 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Mag999

25mcg is a starter dose for children, the elderly or those with a heart condition. If you don't fit into those categories you could have been started on 50mcg and may have felt better than you currently do. I would ask GP to retest your levels now - TSH, FT4 and FT3 - as I believe the guidelines do (or did) state retest after 4 weeks.

Also you take Teva which is well known for many people not getting on with it and having adverse reaction to it.

Were SlowDragon's replies to your previous posts helpful for you?

It would help to test Vit D, B12, Folate and Ferritin and optimise these as low levels or deficiencies cause their own symptoms.

SlowDragon profile image
SlowDragonAdministrator

Roughly what age are you?

As SeasideSusie says standard starter dose of levothyroxine is 50mcg

Suggest you try different brand at next increase to 50mcg

Levothyroxine doesn’t “top up “ failing thyroid, it replaces it so it’s important to be taking high enough dose

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

Essential to regularly retest vitamin D, folate, ferritin and B12

I have trouble maintaining vitamin d, I take the 3000 better you spray daily and I inject b12 regularly as I was severely deficient. I’m 57, no ovaries, which I think might contribute to overall low adrenals, but thyroid has been borderline on and off since my 20’s, and is in close family. I think I was better off without this low dose, can I stop till am able to get it raised or is it best to get tested at this dose to see what effect it is having?

SlowDragon profile image
SlowDragonAdministrator in reply to Mag999

Definitely Do NOT stop levothyroxine.

Get tested after 6-8 weeks on constant unchanging dose

Dose levothyroxine is increased slowly upwards in 25mcg steps. Retesting 6-8 weeks minimum after each dose increase

Low vitamin D and low B12 is very likely linked to being hypothyroid

Common to need high dose vitamin D

This is interesting as I have had a similar response (albeit less than a week in). I am subclinical and didn't tolerate thyroxine well 6yrs ago when I tried, so I asked to start on 25mcg as I am hypersensitive to alot of drugs (GP was going to give me 50mcg). I felt better than normal for the first 2 days and got really excited. Day 3 onwards I have had overwhelming fatigue which is odd as last time around my issue was with increased muscle pain. Sounds like maybe 25mcg is the problem? I am on TEVA but I wonder if that is the issue given that I felt great on it for 2 days?

Mag999 profile image
Mag999 in reply to jasperc163

I was on Teva so it’s possible that was the problem. Same timing as you, 3 days in the muscle pain increased till I couldn’t sleep with it and severe fatigue. Endocrinologist has now said I don’t have a thyroid problem and gp won’t prescribe so I won’t know if would have helped unless/until my thyroid gets worse.

Sorry to hear that Mag999, it is so soul destroying when it makes things worse. I have previously been down the NDT and T3 route as well without success, so not holding out much hope.

I had a similar experience on 25mcg, but it took a couple weeks for the positive effects to reverse and even worsen. After a lot of research, it seems the 25 mcg was enough to sort of get my hormones going again, but not enough to sustain the attempted hormonal balance as usual, which then took a bigger toll. I knew my lab numbers and didn’t have another clinic appointment for several weeks, and I can feel pretty closely what’s going on when I take the stuff, so I went rogue and worked my way up to 75 mcg, which I knew would be safe as long as I didn’t have hyper side effects. Been a week and a half now at 75 and things are starting to improve. I just worked/did life three days in a row. Hormones are still funky I can tell but they’re figuring it out.

Mag999 profile image
Mag999 in reply to LorinK

Good to know, I’m going to have to go it alone without meds as they won’t prescribe now the endo has said it isn’t thyroid related. He did not accept that the low dose had anything to do with it either. Frustrating but will go gluten free and see how I get on.

Ah that is frustrating! Sounds like you got relief from meds and that should indicate something.

Gluten free might help a great deal. I managed on my own without meds for about 15 years (until recent bout with covid). Going gluten free helped more than just about anything.

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