Do you feel worse before feeling better with Levothyroxine

[Mrss25]

Just started with my treatment for Hashinmotos and Im feeling awful on the levo. I am hoping that you do feel a bit worse before getting better, especially as I think I have been poorly for quite a while. My heart rate keeps going up which was my original concern before starting the levo, so Im hoping this will be temporary fingers crossed. Has anyone else felt like this? Many thanks 😊

[SlowDragon Administrator]

It typically takes 10-14 days to notice any improvements…..and before that yes you can feel worse

Then should start to see small improvements…..but as you get closer to 6-8 week retest time it’s common to see symptoms returning as body gets ready for next 25mcg increase in dose

[Mrss25 in reply to SlowDragon]

Thank you, oh wow does it normally have to be increased then?

[SlowDragon Administrator in reply to Mrss25]

oh yes

50mcg is only the standard starter dose

Typically dose is increased slowly upwards in 25mcg steps over 6-12 months until on approximately 1.6mcg levothyroxine per kilo of your weight per day

Unless extremely petite, likely to need to be on at least 100mcg per day

levothyroxine doesn’t top up failing thyroid, it replaces it

Almost everyone ends up on a full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

If been hypothyroid a long time before starting on levothyroxine and if autoimmune disease then standard starter dose is 50mcg

some people need more than guidelines, a few need a bit less

[Mrss25 in reply to SlowDragon]

Thank you very much, this is fantastic info and help 😊

[Regenallotment Ambassador]

what kind of awful do you feel?

I had this, felt worse on 50mcg than 25mcg. I’ve had 4 increases to date.

Some brands make some us quite unwell. Burpy gurgly bloated reflux etc.

if you list the feelings and symptoms people will jump in with their experiences

Sorting my vitamin health out had a big effect too, helped me absorb the Levo better 🌱

[Mrss25 in reply to Regenallotment]

Can I ask what vitamins you took please many thanks

[Regenallotment Ambassador in reply to Mrss25]

sure.

My results from Medichecks showed very low in range vitamin D, B12, Folate and Ferritin.

I take D3 with K2 drops and magnesium.

B complex (I prefer Thorne Basic B) which contains folate and biotin

Eat liver twice week to improve Ferritin

I’m have just cut down Selenium to once a week after 4 months on daily.

I also follow an auto immune low carb/ paleo type diet as my gut health wasn’t too good (work in progress)

🌱

[Honeybee66]

I started on 75mcg Teva brand and i had a really fuzzy dizzy feeling then my ears felt full of water with tinnitus when i laid down. After reading on this forum other experiences on Teva i went to my pharmacy and asked if i could change brand. (Had to ask GP to request first). What brand are you taking?

[BlueKeith]

Yes I didn't feel well when I got put onto 50mcg of levothyroxine. I felt a bit out of sorts . A little nervy. Then it faded after a few weeks. Then when I went up to 75mcg that's when I got the jitters. Was a nervous wreck. I was thinking of just not taking them at all till the good people of this site said to stick with it. Now I'm just on 100mcg. No side effects fingers crossed. It's just a case of putting up with all the side effects. Last a few weeks . Hope they subside soon.

[arTistapple]

My heart rate went up (on 25 mcgs) but I must have read somewhere that this happened and it did not particularly concern me. It was not severe enough to upset me. In fact I welcomed the rev up. Being more ‘able’ I was making patchwork quilts for my granddaughters, I was whizzing along and then cut the ends off two of my fingers. Could not stop the bleeding so off to the minor injuries. I felt overly better but caused myself trauma. I think I was just so long in the ‘slow lane’ my brain could not keep up with the changes the levo created. It shook me up I must say. I have had a number of heart surges on thyroid meds but they calm down.

[HeartWoman]

I have been on 5 mcg T3 for 5 weeks. The first week was a bit rough and then a couple of better weeks and then back down hill. I emailed my doctor and told him my symptoms were pretty severe, so he had me test my TSH, F T4, and F T3, a week earlier than planned. My T3 had increased to 3 (top of range 3.5), but my TSH had increased and my T4 decreased to the very bottom of the range. I started 25 mcg of T4 yesterday and I am feeling pretty crummy, so trying to hang in there and hope it settles down soon and I start seeing the benefits. I retest again in 6 weeks.

This is so hard, but being symptomatic is horrible, so what choice do we have? I just want my easy going, energetic self back.

I just started seeing a new endocrinologist and so far he is working with me in helping me feel better. I am tired of sounding like a hypochondriac.