Hi all. For those that had a very high TSH, how long did it take to get back into a normal and optimal range? I have started levothyroxine 50mcg daily, 3 days after my last bloods which were:
TSH: 48.2 (range 0.27-4.2 mIU/L) [not a typo 🤪]
FT4: 3.9 (range 10.8 - 25.5 pmol/L)
Note antibodies currently:
TSI positive - 0.66 (<0.55)
TgAB positive - 6.3 (<4.5)
TPO negative - <28 (<60)
Currently diagnosed postpartum thyroiditis and hypothyroid after initial hyperthyroid phase.
Actually, your TSH isn't that high. Some people have it in the hundreds. But, it's not the most important number. What you should be worrying about is the very low FT4. T4 is a thyroid hormone. TSH is a pituitary hormone that takes messages from the pituitary to the thyroid. You can't live without thyroid hormones, but you can live without TSH.
The TSH should drop as the FT4 - and FT3 but that is rarely tested - rise. How long it will take for the TSH to drop is anyone's guess, and the rapidity of pituitary response probably varies from person to person, like most things thyroid.
My TSH was about that level at one point. I think it took about six months to come down to 0.45, or thereabouts. But, I was on T3 monotherapy so it might take longer on levo. 
Thanks.
Generally, it takes 2 weeks to see any difference and 4-8 to stabilise following a dose introduction/change. 50mcg is likely too low to stabilise the TSH totally, but the doctor may have considered it prudent to increase the dose slowly so it is not too much of a shock for the body. Your TSH should come down substantially after this dose and you should feel much better(your ft4 is extremely low), but you will probably need at least 75-100mcg levothyroxine for the TSH to normalise. It will take multiple rounds of tests and increase/decrease to find the right dose for you over the coming months. Good luck.
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
50mcg is only the standard STARTER dose levothyroxine
Which brand of levothyroxine have you started on
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
markvanderpump.co.uk/blog/p...
markvanderpump.co.uk/blog/p...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
You will need further increase in dose levothyroxine after next test
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
TSI is also positive (autoimmune Graves’ disease - hyperthyroid) so you should be referred to endocrinologist
You may need block and replace
Block with Carbimazole and replace with levothyroxine
Low vitamin levels extremely common with autoimmune thyroid disease
Request GP test vitamin D, folate, ferritin and B12 if not tested yet
Likely to need to supplement to maintain OPTIMAL levels
Hi,
My TSH went up from 0.02 to 56.10 in around 3 weeks and then took 12 months to come back down to 3.05. I started 50mcg of levothyroxine 4 days after the 56.10 reading which was increased to 75mcg 10 months later. I think I should have been increased earlier really.
I think your TSH can come back rapidly as long as you’re on the correct T4 levothyroxine dose. 50mcg is pretty low. It might get increased after your next blood test. I was started on 100mcg levothyroxine initially when my TSH was 36, that’s the highest mine was recorded at (0.35-5.5). I later found out I wasn’t converting t4 levothyroxine very well at all to the most important hormone which is T3. You must get your T3 tested also at the same time as TSH and T4 once your T4 level is optimal. If your GP won’t test T3 as some won’t, then do it privately and cheaply through monitor my health on line. It’s important to check t3 aswell as TSH and T4. Also check your vitamins D, B12, ferritin and folate as often thyroid sufferers can have low vitamin levels. Good vitamin levels help you return to good health. It is possible to become symptom free once your levels are optimal for you. The aim is a TSH of 1-2. Anything above 2.5 and you’ll get symptoms. TSH of 1-2 is generally where a healthy person’s blood results are. A TSH Under range or over 2.5 you’ll generally get symptoms which you want to avoid.
It can take 3 months to fully get into your system and your brain to adjust.50 mcg is starting dose. But you should see slight improvement after a few weeks to a month. Be symptom led and to be optimal.. find your best range.
I was told for a year in "normal range" but i was freezing and sleepy especially in the early afternoon. My antibodies tests came back nearly off the scale!
Started on 100mcg.. now on slightly higher dose daily. 0.2 is my optimal range.. perimenopause has dropped my thyroid level as progesterone is tied to thyroxine.. one down the other down etc... estrogen is the other side of the see saw.. balancing them. Bad fat in the body raises estrogen.. but you need good fats to eat to make good HDL cholesterol to make all your hormones.
My latest TSH was 0.66.. they said i was fine.. i said.. sleepy, fatigued, heart palps, excercise intolerant, no libido, weight gain, craving bad foods etc
Estrogen 1:100 natural wild yam progesterone (still manufactered) is optimal. But again.. up the dose if needed. Dropping progesterone on it's own to allow for period caused light sensitivity and migraine.. so drop both together. X x 💖
I diagnosed myself as the GP didn't understand anything about a dysfunctional thyroid gland.
GP phoned to telll ne that I had no problems..
I was feeling very unwell and I had no knowledge of the purpose of a Thyroid Gland. GP also had had no idea what a TSH indicated - despite it being 100
It is a difficult question to answer as if they do not have the expertise to get the proper level of hormones into their patients, it is not coming down.
Mine has been high for at least a year.
(It finally came into normal range at some point last year - after six months or so, but could not function through a day on 225 mcg of levothyroxine. Went immediately back up trying to find an alternative. And has stayed high.)
When I was first diagnosed, my TSH was 75. My only symptom was that both hands went numb. I felt relief after about a week and my TSH was normal about 8 weeks later when they rechecked it
Hi curious123 Don't be alarmed if you feel a bit better for a week or so then go back to feeling yuck before it's time for your follow up blood test ... this is quite common when starting levo.
You should be having a follow up blood test about 6 wks after starting on 50mcg Levo
A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.
"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."
just sticking these here , you may find them useful later on when you are getting dose increased :
healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy
healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range-
Lots of great comments. These people have really helped me.It is a bit slow but your bodu has to have time to recover.
Nearly a year ago I was TSH 78.
I started on 50mg and pushed doctors hard to get raised quickly. Started feeling ok after 2 and a bit months when I had been on 125 mg for a few weeks. I then started getting vit D and B12 sorted after getting blood test showing they were low.
I have learned a few struggle and react to Levo.
My brain was all over the place and keeping a log of symptoms and next steps helped.
Good luck
Very High ATG and Anti TPO but normal TSH?
High TSH, High free T4, very high vitamin B12
Very high TSH
Newly Diagnosed - Very High TSH
