Advice about thyroid matters

[elliecain]

Hi girls.

I'm 38 and ttc for 12 months. We had a bfp in August but lost it at 5 weeks.

Been having tests to investigate and finally saw a fertility consultant a couple of weeks ago. SA results all clear, my tests all clear except consultant noticed my TSH was slightly elevated at 3.5 and started me on levothyroxine 25mcg daily. I've been on it for 2 weeks. She said I will only need to take it while TTC and pregnant.

My GP didn't think 3.5 was too high and was surprised I'd been prescribed thyroxine. I don't know what I need to do now and I am sure she doesn't know. Not seeing consultant again for 6 months, so she isn't monitoring me either. I hoped that you might be able to answer some of my questions.

* How long is it likely to take to get my TSH down under 2?
* When should I request bloods to check?
* Do I need to be proactive and ask to have my FT3/4 levels checked?
* I wasn't given any advice on taking this med, but have just read online today that I shouldn't drink coffee before or for an hour after taking it. I've been taking it with my morning coffee. Should I stop?
* How likely is it that my thyroid was to blame for the cp and infertility?

Thank you!

 

[lunamoona]

I'm sorry to hear of your loss

It sounds like you have a good consultant as a TSH above 2 does have links to MC but most GP's are totally clueless about thyroid issues.

GP's are supposed to follow the NICE guidelines which you will be able to print out and educate them with

https://cks.nice.org.uk/hypothyroidism#!scenario:3

Please visit https://healthunlocked.com/thyroiduk/posts as this is the best forum for thyroid on the web, members are very knowledgeable and helpful.

You should have a blood test after 6 weeks on your present dose and if you need to adjust your meds test again after 6 weeks. Once pregnant you should have weekly testing during the first trimester as the foetus can not produce it's own hormone at this stage and your own requirements will go up.

I hope this is informative for you

 

[elliecain]

Thank you so much! That is really useful advice and, when I next see my GP next week, I'm going to bring the NICE guidelines.

I love this forum!

 

[Miskas mommy]

My re prescribed me the same thing, my level was 3.2 and he wants it under 2.5, you should take it first thing in the am on an empty stomach with a full glass of water, the eat nothing for an half hr. I have been on it about 90 days, and my cycles have started to straighten out... Went from 35 to 40 days to 28 last month!

 

[kazazza]

Hi, I'm also on the same medication and my levels came down pretty quickly, maybe 1-2 months. I started on 50mg and am now taking 75.

My doctor checked FT3/4 levels as well. I also recommend that you see an endocrinologist. My GP also assumed that my levels (above 3) were just fine.

I don't mean to discourage you, but I had my first miscarriage before the medication and my second miscarriage after the medication (my dosage was bumped up once I got pregnant to support the pregnancy).

In my case, the thyroid treatment certainly can't be hurting, but it clearly hasn't been 'the' solution to ensure a successful pregnancy.

 

[kazazza]

correction- my dosage isn't mg, but the international units/ug, whatever that converts to...

 

[Vonn]

Thyroid matters can be very tricky so it helps to get really educated and become your own best advocate. My experience with a standard GP, an ObGyn, an RE, and 2 endocrinologists regarding thyroid (for me, hypothyroidism -- low thyroid) was crappy. My absolute saving grace has been my new GP, who has an integrative/functional approach.

My numbers (TSH, FT4, FT3) were all slightly off, though my t3 was off by the most. An initial RE heard my health complaints and suggested my GP test my thyroid. When I looked up thyroid problems when I got home, it was a revelation. All those weird symptoms were me! When I asked that GP if I should get my 5.0 TSH down to 2.5 since that is the guideline for first tri, she told me that's not the way it works; that you get pg, then check TSH, then potentially medicate. I told her that doesn't make any sense at all and never went back. One endo told me my numbers looked fine and said my complaints were just that of a middle aged woman in a cold winter. I just stared at her slack-jawed, amazed at her insensitivity of my miserable state of health & classic symptoms that her specialty had identified as markers of low thyroid. And it wasn't even winter! Lesson: Symptoms and lab numbers don't always match up. My labs were off but not terrible, but my symptoms were; others can have terrible numbers and feel fine. Walk away from a doctor that claims otherwise, they are too old school. The two endos I went to were both this way. It may come from the fact that they handle diabetes, too, which is very straightforward, in terms of numbers truly telling the story. For some (me included), that is simply not the case for thyroid. That is not to say there aren't good endos. There are both great and terrible GPs and endocrinologists out there, in terms of dealing with thyroid problems.

I fought to find a good doc for me. It turns out I have a t3 problem (my t3 stays low even when on t4 meds, so the t4 is not converting into t3 as it should), so I need to be on both t3 and t4 meds. t4 alone does not do it for me. Some doctors don't even believe in testing or treating t3 issues, they falsely assume everyone's t4 converts into t3 as it should. Then there's also the reverse t3 issue, which is even more controversial. I'm already writing a book, so I won't get into that!

Because the thyroid is the master gland/the thermostat it can throw lots of other functions off so it's important to look deeper if you continue to have problems even on meds. It could be that some ancillary problems don't adjust back to normal right away. Progesterone and prolactin are 2 hormones that can easily be made wonky by a thyroid that's off. Cortisol/stress response can be messed up, too. Other impt vitamins/minerals could not be being absorbed properly, like D, B6, etc. Because so much thyroid conversion (from t4 to t3) happens in the liver, detoxing the liver can help. I ended up with some high levels of toxins because my system was so sluggish it wasn't clearing toxins. And finally, the gut. Conversion happens there as well so if things get off in the gut microbiome that can need a lot of work to get back on track. (I happen to also have a case of gut-based candida, which is a nasty bugger -- not sure which caused the other.)

I don't want to make people feel like they must look into all these things. It can be overwhelming. (But feeling terrible is just as bad.) If the standard testing of TSH and t4 and treatment with a t4 med (synthroid, levothyroxine, etc) work for you that is wonderful! But as hope for those who continue to struggle, there are many other related issues that can be looked into & t3 meds can be an absolute blessing. One note: Being on t3 meds drops your TSH level really low, though & some doctors will be concerned. I secretly roll my eyes at them and say I have a dr managing my thyroid so not to worry. I also compiled dr anecdotes from the Internet talking ab how this is normal for those on t3 meds in case a dr pushes back.

And if you pg, get in to the dr right away & get thyroid labs rechecked (as Kazazza indicated). Meds often have to be increased by 50% as baby needs your thyroid hormone until 2nd tri, when the placenta takes over making all the hormones for baby.

Two of my favorite resources as I educated myself are hypothyroidmom & Mary Shomon.

Good luck to you all!!