We just had our tests come back and TSH lvl 30 with free t4 8, we were not aware of the fact my wife had hypothyroidism, the doctor tells us that baby might be retarded, we're devastated hearing this. We got put on 100mcg synthroid.
Can you guys pls share your stories we found out on week 10 of pregnancy.. we don't know what to do.
First of all, the lack of sensitivity with doctors sharing things like this never ceases to anger me. It happens way too often, and on behalf of me, and I know everyone else reading this post, sorry you were treated that way.
Now, that being said, I will also tell you some things about thyroid that will put your mind at ease, in a balanced way. I won't downplay how you feel, or how important this is. Of course it is something to manage, and learn about, and stay vigilant about.
But below are a few things that may balance that out.
First - a lack of thyroid hormone in your wife's body is remedied by taking the Levothyroxine. Levo is not a "medicine" or a "pharmaceutical." She has not been put on "drugs." Levo is a synthetic version of the natural thyroid hormones your wife's body is making, but she's not making enough. The majority of hypo adults are on it (I am, it's the standard first replacement option for most of us).
Second.... UNTREATED hypo has a lot of risks - for anyone! But you are lucky to have been tested and are now on the right treatment. 100 mcg Levo is the standard dose not only for your wife, but also a whole lot of us on this forum. 100 mcgs of Levo (although everyone is different) is a very good average ballpark for Levo dosing ... and that is so because it is a very good average ballpark for enough Levo to replace what your wife isn't making for herself. (For non-pregnant people the general average target replacement dose is 1.6 mcgs per kilo of body weight, to give you an idea. I'm not sure how that translates to those with baby weight... but it will give you some guide posts that you are on a very common dose.
And please remember the difference between UNTREATED risks, and where you are now - treated, and replacing the hormone they have realized she lacks. In fact, most of the literature you may come across will talk about those risks because there are so many women go untested and untreated. That is not you.
Practically speaking...
Has your doctor said when they will be re-testing your wife's bloods now that she is on the 100 mcgs Levo? I will refrain from citing any numbers, but likely you will get a follow up blood test no more than 4 weeks from now? And when you get those new numbers, they will adjust your wife's dose accordingly, and then repeat at regular intervals. It is common for the hypo dosing to slowly increase or decrease based on our blood test results, but some stay on the same dose. It will all be down to her next blood test.
Also, let us know the range of the above "8" FT4 you cite. I will guess it is 9 - 19 but might be something like 12 - 22? If you don't know, that's ok, but you should ask for it.
Then please come back when you get that next test results and share them with us. You will be amazed at how wise, experienced, and helpful this board is.
Lastly, pregnancy creates lots of hormone changes! It will likely be hard for your wife to tell the difference between the many changes happening in her body, especially if this is her first. That being said, how she feels is very important. So please do let us know, and we might be able to discern where her thyroid fits into the big picture.
Post often with any questions, we are here for you, with the collective lived experience of thousands of people managing hypothyroid for ourselves.
EDIT: I forgot to mention also the importance of vitamins and iron levels. Can you share any other blood test results she has - a few to look for to see if she has had them are iron, ferritin, folate, B12 and D. I know some of those are standard for pregnancy checks, others maybe not. Please provide any vitamin/minerals blood test results she has had. These too will be an important part of managing her hypo.
ALSO - what country are you in?
Thank you for your post, the vitamin levels are B12 163
Ferritin 33
Free t4 8 reference 9-19
Tsh 30 reference 0.32-4.00
My main concen is have been diagnosed very late,we don't know what hee lvls have been before pregnancy or during the past 10 weeks of pregnancy, how much damage has been done, In pregnancy as in 10th week of pregnancy?
Brain development is very serious matter we can't handle such neurological issues not fair to the baby.
Retests in 2 weeks from now.
We are in canada
You should tackle vitamins in a separate/but related way. Low thyroid impacts our absorption of ferritin, folate, B12 and Vit D.I don't know off the top of my head what target levels are for pregnant women, but it's safe to say her ferritin needs serious attention. Do you have an iron result? Did your doctor flag this?
Now - more importantly, what about the risks for neurological issues. So I won't downplay any of this, but I will also point out that I bet none of the articles/studies you have tell you anything about the period before 10 weeks - which is really all that matters to you.
I found one - and below is a directly from that study. Not my opinion, just what the papers say. So thought it would be helpful to summarize.
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Here are key points:
- First - almost all the studies you will come across are HUMAN studies. Which sounds great, but there are two problems with that. First it is unethical to do the kind of tests at 5-10 weeks on humans that would help you discover what's happening before 10 weeks. So consider that when seeing any study that says "conclusive, irreversible" anything, as they likely didn't test against something similar to your situation. Further, all the variables in the mothers' health are not controlled well in any of them, making it hard to draw blanket conclusions.
See reasons below from the original cite here: liebertpub.com/doi/10.1089/...
(search the phrase "Adverse neurocognitive effect on the offspring" in the link to find it)
It says:
" It should be noted, however, that the lack of positive data does not rule out a potential harmful effect, nor does it rule out the theoretical effectiveness of any intervention. It is important to note that such studies are highly difficult to complete and often enroll subjects with great heterogeneity with regard to important study parameters. For example, the timing of LT4 intervention during gestation likely plays an important role in the effect of any intervention. The two randomized controlled studies described above initiated LT4 treatment only at the completion of the first trimester or later—which may be too late to significantly impact neurodevelopment. Animal studies have suggested any window of opportunity is likely earlier in gestation (310,311). Similarly, the duration and severity of maternal hypothyroidism are likely important, yet virtually never controlled for, because all studies include only a single baseline measurement of TSH concentration during pregnancy. It therefore must again be emphasized that overt maternal hypothyroidism during pregnancy should be considered dangerous, and logic suggests that moderate (or even mild) maternal hypothyroidism may similarly impart risk. What remains uncertain is the nuanced understanding of how this risk is reduced or abated as the extent of maternal hypothyroidism is normalized or other variables are modified. This point should be emphasized as we consider that the most common cause of maternal hypothyroidism has dramatically changed over the last century. Formerly, severe iodine deficiency was common, while more recently, the principal cause of maternal hypothyroidism is maternal Hashimoto's disease. These disorders are physiologically different, though both may impart a similar phenotype demonstrating elevated maternal TSH concentrations."
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- So second, the question would be what "early" treatment means. If "end of the first trimester or later" is too late, then what does "earlier in gestation mean." Is 10 weeks late or early? What has happened with brain development to that point, and what is the window for treatment?
Here's an answer to that from a study that was what the "310" footnote in the above quote, acknowledging you can't ethically test these things embryonically, so the researchers studied the early gestation period in rats - focusing on weeks 5-6, week 8, and week 20 as important. And using the parallels in scientific research that we know to hold true in animal research.
There is a lot of hope in reading it. Much better than any of the broadstroke summarized things you will read. As with anything, none of this is black & white, nothing about this is easy. But this will at least give you really detailed data on brain development and thyroid issues in the period from 5-10 weeks through midgestation which no other study does.
Key points:
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* Neurogenesis happens in humans between week 5 - 20. During that time, the maternal thyroid supplies the baby until midgestation (ie, 20 weeks) when the baby then has developed its own ability to supply its own T4/T3.
* The study suggests that issues "can be prevented before midgestation" and the baby's sensitivity to maternal thyroid hormones corresponds to late first trimester through midgestation.
So all that is great news for you.
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So the remaining ambiguity is what about the slice of that period that is already behind you? What happens between weeks 5-10 where you are today.
There are TWO PARTS to the answer... read both in a row, don't get stuck on the first part. 1) there is indeed brain development happening at 5-6 weeks that is impacted by low maternal thyroid hormones..... BUT THIS IS FOLLOWED BY, 2) "which would be irreversible if T4 treatment was delayed."
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So that too is good news for you. But... you ask, what does "delayed " treatment mean?
Well, the study in its conclusion in the last paragraph says that yes, development and damage can occur, IF NO PALLIATIVE T4 THERAPY IS APPLIED TO PREVENT POSSIBLE DAMAGE. And you have already applied that T4 treatment.
In conclusion: Present experimental results are the first to show that a moderate and transient maternal hypothyroxinemia during a period roughly corresponding in man from the end of the second month up to midgestation, causes irreversible alterations...of children born to mothers who have been hypothyroxinemic before midgestation... especially if this occurs at the beginning of cortical neurogenesis and no palliative T4 therapy is applied to prevent the possible damage.
Here is a link to the whole study: digital.csic.es/bitstream/1...
There are many parts that reflect the broader summary view of the dangers and outlook. But when you read carefully, the details don't overlap with your situation (ie, 10 weeks, already on Levo.) I'm not sugarcoating any of this, but sound research shows that you are only a couple weeks off of the ideal treatment period starting "at the end of the second month" and that you have the lions share of the time left to midgestation to effectively mitigate fetal brain development issues.
I know you wish it had been started earlier, but given everything above, it's a better story than over generalized info you have been given, which is good news, but probably also makes your decision harder.
Let us know how else we can help and support.
B12 163
Ferritin 33
Please add ranges on these
Ferritin is low
B12 may be low if it’s serum B12 result - range typically 180-700
If it’s active B12 likely good level - range 70-150
What vitamin supplements has your wife been taking
Any pre natal supplement?
Also very important to test folate and vitamin D
Pregnancy guidelines
NICE guidelines that if hypothyroid or subclinical you should see endocrinologist BEFORE TTC
cks.nice.org.uk/topics/hypo...
See pages 7&8
btf-thyroid.org/Handlers/Do...
Also here - dose increase in levothyroxine as soon as pregnancy test confirms conception
cuh.nhs.uk/patient-informat...
thyroidpharmacist.com/artic...
Low ferritin, low thyroid levels and miscarriage
preventmiscarriage.com/iron...
Low iron and hypothyroid
endocrineweb.com/news/thyro...
Folate and B12 and Neural tube defects and autism
Hi - I would suggest that you have further discussions with your Dr about the information he has given you . As your wife’s hypothyroidism was diagnosed within the first trimester of her pregnancy, and replacement thyroxine initiated immediately, then it is likely that the risk to your baby is low. Ask him to discuss this with you, together with how he plans to manage your wife’s treatment during the pregnancy and after the birth, as well as how the baby will be monitored.
My experience is that doctors sometimes give you worst case information, possibly to cover themselves - but it’s not unreasonable for you to insist that this information shared with you should be qualified and supported with a treatment plan.
It never fails to shock me that professional medical people don’t understand the impact of what they say.
Pregnancy is as worrying as it is exciting and always intensely emotional; it’s impossible not to give into your fears - and for this reason I’d seek more information from your doctor first. I sincerely hope he will be able to reassure you.
Wishing you the very best.
How long have you been told to wait between starting Levothyroxine and getting your next blood test?
If 100mcg Levo is your perfect dose then you are lucky to have got that right first go. It is more likely that your ideal dose is different, and it could be higher or lower - most likely higher if you are tall and/or muscular, or lower if you are petite and not muscly.
I would suggest that you have repeat thyroid tests every 4 weeks throughout your pregnancy and for a few months after you've given birth, and adjust dose as necessary. And if you can persuade your doctors to test TSH, Free T4 and Free T3, they will be more informative than just a TSH test - although I have read that Canada has gone the same way as the UK and is usually only testing TSH, which simply isn't that informative by itself. The active thyroid hormone is Free T3. People vary in their ability to produce all the thyroid hormones, whether they are hypothyroid or not. When the thyroid starts to fail the body will prioritise producing Free T3 as long as it can.
One of the effects of hypothyroidism is to reduce absorption of vitamins and minerals so ask your doctors to test your Vitamin D, Vitamin B12, Folate, and an iron panel. Ferritin is a measure of iron stores. Some other tests that might be helpful are zinc, copper, iodine, selenium, and cortisol. Get the results and reference ranges for all of them and post them on the forum in a new post, and ask for feedback.
Best supplements to improve the above are :
Vitamin D - Vitamin D3 NOT D2 - I've never seen anyone make an improvement in their Vitamin D levels with D2. If you are vegetarian or vegan then you can source D3 from D supplements made from lichen.
Vitamin B12 - Methylcobalamin NOT cyanocobalamin
perniciousanemia.org/b12/fo...
perniciousanemia.org/b12/le...
Folate - Methylfolate NOT folic acid
takecareof.com/articles/ben...
chriskresser.com/folate-vs-...
Iron - Heme iron works best for many people but it can vary. Others do best with iron salts.
Hello blood test will be in 2 weeks, its almost been a week on drug we started of with 0.25mcg then saw endocrinologist and he boosted to 100mcg so will do bloodwork in 2 weeks, falling has provided so much info and In good detail,
We had the dating ultrasound a few days back indicating that pregnancy is about 8 to 9 weeks how accurate is the daring ultra sound?
What an awful experience for you both. Please don't worry about your baby though, worrying won't help and you are sure to love your baby anyway. This might reassure you - as soon as I was born my mother was told to have me Christened because I would only survive for 20 minutes or so. She suggested instead that I was put into an incubator (obviously I did survive!) but subsequently told I would be slow if not actually mentally retarded. I am a little above average IQ, so please set your worries aside because relaxing is good for your baby and so long as you love him or her all will be well.
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