Update on high TSH ..HELP!!: So I made a post... - Thyroid UK

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Update on high TSH ..HELP!!

Bingo777 profile image
9 Replies

So I made a post about over a month ago so here is another update.

1st test was done during 10th week of pregnancy which we never had gotten done before in life and this was our first test during pregnancy at week 10

Test done feb 27th

TSH 30 range 0.32- 4.00

FREE T4 8 range 9-19

Started medication 100mcg

March 10

2 weeks ago

Tsh 0.32 range 0.32- 4.00

Free t4 17 range 9-19

Free t3 7 range 2.6-5.8

March 28

Test yesterday lowered dose to every other day 100mcg

Tah 0.03 range 0.32- 4.00

Free t4 14 range 9-19

Free t3 7.5 range 2.6-5.8

What is going on here? I'm very concerned with baby brain development at this point because we started medication in the 10th week of pregnancy with hypothyroidism and after starting medication we cannot control it to normal ranges its now become hyperthyroidism.. has anyone experienced this how did your baby turn our? What effects is this playing in my baby's brain development at this point.

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Bingo777
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humanbean profile image
humanbean

With a TSH of 30 it was reasonable of your doctor to have started you on a dose of 100mcg.

Testing again 2 weeks later was too soon. After being deprived of good levels of thyroid hormones it can take quite a long time for the body to adjust, and it certainly won't have finished adjusting in two weeks. But given that you are pregnant, perhaps your doctor was swayed by that. Having said that your TSH, Free T4, and Free T3 were actually very good for so early in your treatment, although without the reference ranges I can't be sure.

Do you have a record of the reference ranges? If you do, could you edit your first post and add them to the results, please.

.

In a healthy person with a healthy thyroid :

See this graph of TSH in a population of healthy people with healthy thyroids, and read the blurb as well :

web.archive.org/web/2004060...

TSH is usually within range, but in the lower half of the range because the distribution of TSH is skewed.

Free T4 and Free T3 would most likely be around halfway through their respective ranges.

.

With untreated hypothyroidism :

TSH is high (Over the range. Can rise to over 100 but rarely goes that high)

Free T4 is low (Depends on range, but will probably be below the range)

Free T3 is low (Depends on range, but will probably be below the range)

As the condition is treated, TSH lowers, Free T4 rises and Free T3 rises.

.

In untreated hyperthyroidism :

TSH is very low (0.01, sometimes 0.001)

Free T4 is very high (Well over the range i.e. 30+, but could be 60 or more)

Free T3 is very high (Well over the range i.e. 20+, but could be 40 or more)

As the condition is treated, TSH will rise, Free T4 will lower, and Free T3 will lower.

.

Doctors often treat hypothyroidism as a minor condition (it isn't a minor condition), but they are absolutely terrified of hyperthyroidism. They pay no attention to Free T4 or Free T3. Their reaction is based on TSH only, despite the fact that TSH is not a thyroid hormone it is a pituitary hormone. Your TSH of 0.32 is low but not very low as that graph I linked to will show. It wouldn't be unusual for people who have no thyroid disease to have a TSH similar to the 0.32. And it is also normal for people who are being treated for hypothyroidism.

So your doctor completely over-reacted in halving your dose of Levothyroxine. He could have left your dose where it was and then tested you again 3 or 4 weeks later, as long as you weren't getting symptoms of overdose. If he was determined to reduce he could have just reduced to 75mcg per day. Doctors often over-react and reduce doses of thyroid hormones by too much.

Something you need to know...

Doctors are very loose and fear-mongering with their terminology.

If someone with proven hypothyroidism (like you) is slightly over-treated with Levothyroxine, their TSH, Free T4, and Free T3 will start to look like a pale imitation of the results of someone who is hyperthyroid. And doctors will tell their patients they are hyperthyroid. That is complete nonsense. Someone with proven hypothyroidism cannot become hyperthyroid. But they can be over-treated, in which case the only thing to do is to slightly reduce your dose.

.

Note that by roughly middle of the pregnancy your baby should be able to produce its own thyroid hormones, so your levels become less important to them. But you still need the thyroid hormones, so keep tracking your levels throughout the pregnancy and for at least three - six months afterwards. You may find your thyroid "recovers" to some extent after pregnancy. But you could also remain hypothyroid and will need to take Levo for life.

If you decide to get pregnant again in future, make sure to have up-to-date TSH, Free T4, and Free T3 tests before trying to conceive, and then keep testing every 2 - 3 months after that.

SlowDragon profile image
SlowDragonAdministrator

it’s also extremely important to test vitamin D, folate, B12 and ferritin

Plus test both TPO and TG thyroid antibodies to see if your hypothyroidism is autoimmune

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

That’s an odd dosing regime to take nothing one day and 100mcg the next

50mcg daily would be more balanced

But reducing by such large amount questionable

What’s the range on Ft4 and Ft3

Did you test as recommended

Approx how much do you weigh in kilo

By week 12 you baby should have their own thyroid functioning

FallingInReverse profile image
FallingInReverse

Bingo, so good to hear from you.

Please update the test results above WITH RANGES. T4 will maybe be 9-19… or 12-22 … or something like that.

Please also add exact dates for each of the blood tests, and the weeks from conception next to each.

My quick reply is - I am glad to see your T4 increase in the past few weeks. That is what you want to see. I know this is all so scary and uncertain, but that T4 is what your baby needed/needs.

I have not read all this post/replies carefully as I am out of the house. I will later. But I will say that your focus was/is sufficient T4.

You acted quickly and did everything you possibly could have and the numbers went up. You should feel very comforted and good about that.

I don’t want to be too quick with my opinion or reccos, but without yet reading carefully, you should not have reduced your Levo. Please read other replies here in balance.

And provide the additional blood tests details.

Bingo777 profile image
Bingo777

Dates and ranges added, the problem here is that we diagnosed hypothyroidism late in pregnancy in 10th week of conception, and that's why we're doing 2 weeks tests to see results according to endocrinologist.

I'm worried that we caught hypothyroidism late in pregnancy and it's been a month and now we're hyperthyroidism for a month it's frustrating, I'm worried about retardation or possible issues with brain intellectual delay

FallingInReverse profile image
FallingInReverse in reply to Bingo777

If my corrections to your timeline below are correct, then congrats on a very effective approach between week 10-12 and 14.

Raising your T4 out from that 8 result - up towards top of range is EXCELLENT.

Week 10-12 is indeed the essential window you were hoping to close. We know that in an ideal world you would have learned about the hypo at week 8… but also knowing that studies show that the impact of low T4 in those early weeks can be remediated if Levo is started in the first trimester. So - again - eyes wide open on the whole situation - but… you did it!

Further - your wife hasn’t “gone hyper”. Being within range but at the top of the range isn’t necessarily “hyper” and isn’t necessary problematic. As Humanbean notes - hyper is as misunderstood as any of this thyroid stuff.

Also - although I do not know for certain (I have no personal experience) but from the research I’ve done, on these early months it’s the sufficient FT4 that is essential to brain development. You have indeed addressed that beat you possibly could have.

And even if your wife was hyper (which she’s not) the top risks are not to fetal development right now, and it’s not as urgent as your low FT4 was a few weeks ago.

Can you lmk if the below is correct? My main confusion is when you reduced from 100 mcgs daily to 100 mcg every other day. Was it 2 weeks ago, or yesterday?

Feb 27 - Week 10 - first test, no Levo

TSH 30 range 0.32- 4.00

FREE T4 8 range 9-19

Started medication 100mcg

March 10 - Week 12 - 12 days on100 Levo daily

Tsh 0.32 range 0.32- 4.00

Free t4 17 range 9-19

Free t3 7 range 2.6-5.8

Started 100mcg every other day

the 3rd test you see we were taking 100mcg every other day. So it was 2 weeks ago.

March 28 - week 14 - after 18 days on 100 Levo every other day

Tsh 0.03 range 0.32- 4.00

Free t4 14 range 9-19

Free t3 7.5 range 2.6-5.8

Edited timeline per your reply below

Edit- I should also be more careful with my language saying she definitively isn’t hyper. One could write a novel on whether that’s true or not, and why, how you’d figure it out and what you’d do about it. But my point remains the same - an FT4 just under top of range given your stage of diagnosis and Levo history in the past few weeks does not mean “hyperthyroidism” right now. Your focus should be on maintaining that nice high level of FT4 in that mid to upper range.

Bingo777 profile image
Bingo777 in reply to FallingInReverse

Hello so after March 10th (second test) results we were told to take 100mcg every other day the 3rd test you see we were taking 100mcg every other day. So it was 2 weeks ago.

FallingInReverse profile image
FallingInReverse

OK, read the replies above, all consistent with one another.

Your questions - what is going on here is completely normal and good. Your wife’s free T4 has been at a great level since you started Levo.

You’re concerned about brain development - studies show the critical period to take action on very early low FT4 is 8-12 weeks. You already know you only learned at 10 weeks, but also already know that all studies show that when treated with Levo before the end of the first trimester and through mid pregnancy- the risks to fetal brain development that may have been at play between 5-8 weeks can be eliminated. There are of course no guarantees, but based on the very relevant and detailed studies, that’s what they say, and YOU DID IT.

To your point about “not being able to control to normal ranges” - I’m happy to tell you have absolutely got them to normal ranges. See other replies for great info on how doctors misunderstand hypo and hyper overall.

Regards to your babies brain - you are through the crisis. You have your FT4 up. And you are now into 2nd trimester/mid-gestation where your baby starts to make their own thyroid hormones.

Lastly, as above, all of us do question how much the Levo dropped. Although your latest FT4 is fine at mid range, we probably would’ve kept it at 100 or at the most dropped to 75 daily if forced to.

That being said - your bloods are fine! Your baby will start to pick up the slack!

Also, I don’t know off the top of my head, but target thyroid levels change through the trimesters. So keep looking forward. You can look back at your posts and all the replies to see how well you navigated the most challenging weeks for your baby’s brain development in weeks 10-14.

Bingo777 profile image
Bingo777 in reply to FallingInReverse

Thank you for your reply and taking your time to explain in such details, God bless you! And everyone else who have posted. We thought our doctor would've dropped it to .75mcg as well but he suggested st 100mcg every other day.. let's see what the doc says next. Because the free t4 dropped by 3 to 4 points and free t3 went up to 7.5 from previous 7.0 which I heard is bad as well if not treated..

FallingInReverse profile image
FallingInReverse

One last article to share - although dated, I like how it gives a clinical study view of the reasons why it’s recommended to increase Levo through pregnancy, by how much and for how long.

It has some elements not relevant to you (ie, it talks about Levo increase from a pre-pregnancy dose - which your wife doesn’t have.) But it also gives a clear picture of how pregnancy changes blood chemistry, and how those changes demand more exogenous Levo at least through mid-gestation.

You may read it and conclude that reducing to what is effectively 50 mcgs a day of Levo is too low. If I was you I would do more research and consider going back to 75 or 100. Also, re T3 level, I read somewhere that T3 doesn’t cross to the fetus… but I fully acknowledge that this might be wrong, as there is debate for pregnant hypo folks who are T3-only. But be careful with any assessment you make that a FT3 level like that is “bad.” T3 is even more misunderstood than most things with hypo (and that’s saying a lot!)

Here’s the article:

nejm.org/doi/full/10.1056/N...

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