Very High TSH: Hi all. For those that had a very... - Thyroid UK

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Very High TSH

Curious123 profile image
12 Replies

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.

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Curious123 profile image
Curious123
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12 Replies
greygoose profile image
greygoose

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. :)

Curious123 profile image
Curious123 in reply togreygoose

Thanks.

am111 profile image
am111

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.

SlowDragon profile image
SlowDragonAdministrator

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

Sat2 profile image
Sat2

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.

McPammy profile image
McPammy

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.

ThyroidalLinda profile image
ThyroidalLinda

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 💖

shaws profile image
shawsAdministrator

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

Litatamon profile image
Litatamon

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.)

daknash profile image
daknash

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

tattybogle profile image
tattybogle

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-

Sleepman profile image
Sleepman

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

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