Hi All, I started levothyroxine 6 weeks ago at 50mcg and can confirm it’s been the longest 6 weeks of my life in terms of hoping for improvements, but none so far. I’ve just repeated my bloods (all vits looking good and pre-test protocol followed).
My TSH has come down and my T4 and T3 are lower than previous which explains why I still feel awful.
Before Levo:
TSH 5.11 (0.27 - 4.2)
FT4 14.8 (12 - 22)
FT3 4.5 (3.1 - 6.8)
After Levo:
TSH 2.13 (0.27 - 4.20)
Free T4 11.8 (12.0-22.0)
Free T3 3.8 (3.1 - 6.8)
I’m aware 50mcg is the starting dose and I clearly need an increase (I’m 75kg) so a fair way off my optimal dose. What I wanted to ask is, is it normal for T4 and T3 to drop lower after starting levo? Is it simply in response to my pituitary turning down the TSH? When does the replacement dose typically take over?
I’m all for going slow but crikey I’m not sure I can handle another 18 weeks until I feel better (I’m unable to work currently i feel that bad).
Also my cortisol is high. Will that be hampering any replacement efforts? I’ve been doing everything zen for the past 3 months but it’s not having an effect so far…
Cortisol: 623 (73.8 - 507.0) (also high in saliva)
No antibodies and I’m pending Endo referral in March for high prolactin and non-existent LH.
Thanks!
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GussyG
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Levo replaces your own thyroid hormone production so if 50mcgs was less than your own thyroid was producing then yes your level will be lower on it. The answer is just that you need a dose increase. Ask for it on a trial basis if GP is reluctant.
Exactly what were your vitamin results? Most people need supplements to gain good levels.
Cortisol will be affected by low thyroid hormone levels so best to wait until you're closer to well replaced.
Thanks Jaydee, I’ve got an appointment next week and I’m seeing a private GP so I’m sure she’ll increase it for me (I gave up with NHS after they categorically told me it wasn’t my thyroid). I just wanted to ask on here and get ahead with knowledge before any appointment. It’s a funny old business to actually make yourself worse for months before feeling better (although appreciate other people feel better straight away). Do you think I could ask for 100mcg or will that be too big a jump?
I supplement with a methyl b complex, vit D&K2, mag, vit C and ferritin is the best it’s ever been at 128 after only 3 weeks on Three Arrows (what a fantastic product!).
Levo (Accord) I take when I wake usually around 4/5am with water then try and go back to sleep until 7am. I eat breakfast and have a cuppa around 8am. Supps not until after breakfast and lunchtime.
I’ve been supplementing vits for years so I only have one result which was ferritin which was 34 in 2023 so I started taking ferrous fumarate and got it up into the 70s but it took over a year. Vit D used to be a bit on the low side with oral spray (70) but is now good.
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Which B complex are you taking
Accord don’t make 25mcg tablets
So request extra 50mcg tablets and cut in half to get 25mcg
Retest after 6-8 weeks
Quite likely to be ready for further increase after that
As dose of Levo slowly increases, cortisol levels should slowly decrease
Approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thanks a lot all very useful info, I’ll get the separate folate for the next test and a tablet cutter. Yes I stopped my b complex a week before. I get all my info from here and follow it to the letter and very grateful too!
Serum b12 has always been over range and now my active is over range (Blue Horizon doesn’t state how much). I’m not sure if high active is an issue, but having spotted this previously I swapped from the NutriAdvanced B Complex to the Love Life Complex as it has slightly less b12 and slightly more folate. All nice methyl forms, P5P and lower on fillers.
Ps it’s reassuring to hear about the cortisol, at this point I feel very sorry for my adrenals pumping away!!
I do understand the wish & need to be better ASAP but with thyroid it cant really work like that. Those that try and rush healing tend to end up taking longer over it.
We only go up in 25mcg dose increments as otherwise the body can rebel and give worse symptoms of 'intolerance'. It takes tme for the body to get used to increased doses. Simply cannot rush that.
Thanks Jaydee, I hear it. I know it’s not a quick fix by any means but was just disappointed to have even lower levels than before I started! I know when my T4 was 10 I was in real trouble, so just above on 11.8 isn’t a nice place to be. Hopefully after the next few increments I can see some upwards movement in numbers and symptoms 🤞
I was going to say antibody attacking thyroid gland releasing T3 and T4 but you say not autoimmune.
The wise experienced people on forum seem to say going over is worse than finding level slowly.
There is also some swing with illness and just through the day of levels. The differences are not big but your symptoms sound worse so need more.
Did you stop biotin /b7 a few days before testing. High levels interfere with thyroid tests.
T4 before 28% after -2%. Thru' range
T3 before 36 % after 17%.
I think this shows you are converting T4 to T3 well, big positive but only a few result and other things could be going on. Much better if you only have to take levo.
Thank you Sleepman, very nice to hear my body is doing something positive! Yes I made sure to stop my b complex a week before and my antibodies are negative.
Joint pain and muscle aches are some of my worst symptoms before starting so I can’t stay it’s made that worse. Perhaps the joints slightly less painful. My muscles still twitch away day and night and I feel like I have flu (you know that feeling in the muscles?). I did have a day or two when I first started where I thought I might have felt a bit better, but then it returned and some days worse. It’s evened out a bit now to just crap again 😂
Do not be tempted to rush the titration. When I was on 50, I took a couple weeks at 62.5 before waiting 6 weeks in 75 before testing.
Of course likely you will need more than 75, but you must increase low and slow, Wait a full 6 weeks. Retest. Increase again.
Later on when closer to your full replacement dose, wait 8 weeks (or more) to avoid overshooting your own sweet spot.
When you feel worse and panicky and impatient within that 6-8 weeks - lean on this forum to talk you off the ledge. I’ve felt that way a million times, and this forum saves me from myself time and again!
There are no short cuts, and trying to take one will only add delays and backfire.
We’ve all been there, done that and it’s the only way. It just takes time and patience.
A good visual of what to expect attached. Hang in there, you’re on your way.
Bless you thank you FallingInReverse, the last sentence 🥹. I hear you about feeling worse and panicky and impatient, that’s me, thank you I will come back here. It’s an absolute godsend.
I will also say that of course we are all different… so never hesitate to post with worries, concerns, or symptoms within that 6-8 weeks. Indeed there are some allergic to fillers, there are vitamin deficiency issues, etc.
Seeing your note above - in my 50-75 Levo days, my legs felt like lead, and it hurt to put my feet on the floor in the morning as my ankles/joints were so achy. I too spent many a groggy morning not bring able to get my head off the pillow, puffy eyes, while my cortisol which had been compensating for my low thyroid for 10 years adjusted. That’s just my experience.
We are all so different yet also very very the same : )
Ps, without antibodies- what was it that made you make the leap into Levo? Asking out if curiosity as I manage my 18 year old daughter’s ambiguous thyroid results over time.
ok this gives me much hope! Thank you for sharing your experience of the early days.
As for starting Levo I felt like I had to or I might die. Ok that’s very dramatic but to rewind before that point I started HRT about 3 years ago and the doctor requested a thyroid panel and my TSH was 3. Of course told that was normal. I did some digging back then and saw that it probably wasn’t normal and tracked with my hair loss, fatigue, cold intolerance, eyebrows falling out. But I didn’t do anything about it and hoped the HRT would help. It never really did so fast forward a few years and I kept an eye on my thyroid through Medichecks with my TSH now consistently coming in over 5. Then boom after a very stressful event my body pretty much gave up the show and I took myself to hospital to be told again, not thyroid. That’s when I contacted a private thyroid GP. I also got a scan which showed my thyroid was inflamed after experiencing tight neck/swallowing symptoms. So by that point I was desperate to get started!
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