Optimal thyroid levels when TTC?

[Frazzlerock]

I have an under-active thyroid which was diagnosed many years ago. I spoke to a fertility nurse who said I should aim to get my levels as close to 2 as possible. I was over-compensating so had my thyroxine reduced from 100 to 75, then to 50.
My most recent TSH has come back as 0.6. I'm told this is 'normal'. Is this okay for TTC though?

We've been TTC for 3.5 years and lost three babies so I'm desperately trying to do everything I can for a healthy outcome for our future rainbow baby.

Frazzlerock - For pregnancy it needs to be less than 2.5 so yours is pretty good. They will need to monitor it throughout pregnancy.

When it comes to your thyroid it is important to know what your T3 and T4 levels are. You could have a TSH of 0.6 and ridiculously low T3 which would not be good. (I have Hashimotos Thyroiditis). Do you know the cause of your Underactive thyroid? Many UK doctors don't bother to find out however Autoimmunity is the most common cause. Knowing this could be useful to you TTC and also self-care during pregnancy. For this you need to have your Thyroid antibodies tested.

If I was in your position I would definitely get a private Thyroid check (perhaps through someone like medichecks) just to be sure that you T3 and T4 levels are optimal for pregnancy. GP's won't usually do these tests but it gives you a much better picture of what your Thyroid is up and gives you peace of mind.

I'm so sorry to hear that you have lost three little ones . It does make me wonder whether your thyroid was being properly managed at the time and whether this could have been a reason. I had my own pregnancy difficulties long before I discovered I had an underactive thyroid and I can't help but wonder if this was one of the problems.
So anyway, to summarise, your TSH is at a good level for TTC but fertility nurses are not experts on Thyroid conditions. T3 and T4 are really important, take control, get them checked, get optimal and hopefully, you will soon be holding your own little bundle. Sending you good wishes and hope it all works out for you.xx

Oh wow, thank you so much!

I knew there were other levels that should have been checked and I couldn't remember what they were. When I rang the surgery today, the receptionist said my results were 'normal'. I had to ask her what the actual results were and she said 0.6. Then I said I was expecting two further thyroid results but I couldn't remember what they were called (as you say, T3 and T4). she said she only had the TSH result.
I might call again and ask about T3 and T4. My GP knows full well I'm desperately TTC as she's been my GP since our first loss and I see her fairly regularly so I'm surprised she didn't ask for T3 and T4...

Do you think this would be something my RMC consultant would sort for me if the GP hasn't done so?

I also wonder if it was my thyroid that was causing our babies to die . I know it was always slightly over compensating but I seemed to be comfortable on it so I never had my meds reduced until my consultant suggested it after our third loss.

I have no idea of the cause of my underactive thyroid, I didn't think I'd ever know. I have PCOS so my endo system is pretty shit TBH.

I have had two DC previously (11 and 14 now) with my ex husband and, apart from PCOS getting in the way of TTC, I had never had a miscarriage until 3.5 years ago. So I don't know if it is my thyroid or not. It's always been pretty stable (although very slightly over until recently )and I get it checked regularly. I guess I'll never know.

I might call my surgery again and if no joy, I will call my RMC team.

Out of interest, what should T3 and T4 be? Or is that completely dependent on TSH?

Tsh at 0.6 is good for TTC, there's wriggle room for it to creep up but still be safe. T4 should be in the upper range (top end). Once you are pregnant it needs to be checked monthly.
Have you have your thyroid antibodies checked? Tpo and ttg? If you are positive for antibodies, this is an indicator of auto immune thyroid disease and can be linked to miscarriage. I have it and had multiple miscarriages. I did go on to have 2 babies. I would raise this with your RMC consultant.

I had both Endometriosis and PCOS as well. There is a strong link with both diseases and Autoimmune Thyroiditis (Hashimotos). I will warn you now that GP's are by no means the experts of this, also they will rarely if at all, get your T3 and Thyroid antibodies checked due to budgetary issues.
www.medichecks.com/thyroid-function-tests/thyroid-check-plus
This test is brilliant. It will give you the full picture of your thyroid, including whether you have autoimmune thyroiditis, I strongly recommend you get it done, it could open the key to the knowledge as to why you have experienced fertility issues. Autoimmunity is the most common reason for an Underactive thyroid so the odds are that you have it. This medical reports explains how Hashimotos (autoimmune thyroiditis) can affect the growing fetus, as can being undermedicated on your thyroid medications.

rarediseases.info.nih.gov/diseases/6570/hashimotos-syndrome/cases/52284#targetText=Hashimoto's%20syndrome%20that%20is%20untreated,woman%20and%20a%20developing%20fetus.&targetText=Potential%20complications%20of%20an%20underactive,%2C%20and%2For%20postpartum%20bleeding.
However, it's important if you do this test to put in the notes what Thyroid medications you are on otherwise they will comment as if you are a person not on medication.

Also note that being in range for Thyroid hormones is not enough., they need to be optimal.

For T3 and T4 this needs to be near the top of range. I'm not sure how this differs in pregnancy.

You will be amazed at the number of people how have say a TSH of around 1.0 and still feel unwell, only to find out that their other thyroid hormones are out of whack when they've taken it upon themselves to get a thorough hormone panel done.

Also bear in mind that for your Thyroid to work well you need to have optimal B12, Folate and Ferritin. May be worth getting these checked too and get all your ducks in a row.

Yes thyroid problems can cause recurrent miscarriage. As you have PCOS get tested for a clotting disorder too - in a lot of races they can go hand in hand

Thank you ever so much both of you

I will get that medicheck test sorted asap as I think it will be a lot faster than my GP and/or my RMC team - my consultant didn't call me back last time I left a message

Sorry for more questions, but what if I find out I have autoimmune thyroiditis? What would be the next steps for 1. getting pregnant and 2. avoiding MC?

Its all such a minefield. We're also waiting on results from DP's semen analysis as he had mumps after our second loss (we both did) and we know that can cause DNA fragmentation so that could well have been a cause too.
With any luck his results will be clear but I feel like everything is against us with that and my thyroid and PCOS

I'm so lucky to have my two older DC, but since I had my first loss with my DP I can't shake how much I need to hold my rainbow baby. I wish I could just give up on it because its soul destroying waiting forever for my egg to finally pop out when it feels like it, then losing baby after baby and seeing BFN after BFN.

I think my B12, Folate and Ferritin are all fine. I had these checked but I can't remember if I actually found out my results.. the GP usually calls if abnormal. I do take a good amount of methylfolate daily.

@Teddybear45 I took a low dose aspirin in my last pregnancy just in case I had a clotting issue, but our baby still died sadly. I didn't have an issue with my two older DC. Is this something that can occur at any time? Or is it something you've always got?

Right, I'm going to book that medicheck now!

It would depend on the antibody results. Thyroxine does reduce my antibody results marginally but my IVF clinic recommended an aggressive steroid / lipids protocol for me as thyroid antibodies can often destroy the developing embryo. That along with blood thinners for my clotting disorder resulted in a BFP - as the pregnancy has progressed by consultant has kept a really close eye on my thyroid antibody results and has also filed a baby alert as my antibodies may have harmed the baby’s thyroid so the heel prick test etc needs to be performed immediately.

Clotting disorders would be something you always have - but some of the rare ones can get worse as you get older. I have one that gets worse as your blood inflammation levels get higher (which often happens normally with age). So it’s worth checking. Also, while aspirin is a blood thinner it often isn’t enough to stop the formation of microclots in the placenta (assuming your pregnancies have gotten this far) - for that heparin is provided too.

If you find that you have Autoimmune thyroiditis as long as your Thyroid levels are optimal (TSH, T3 and T4 - keeping remembering, optimal, not normal) then these are the factors that will reduce your chance of miscarriage the most.

Basically, if you have Hashimotos your immune system is attacking and killing your thyroid tissue which COULD be why you were diagnosed with an underactive thyroid in the first place (basically part of you thyroid tissue has been killed by your immune system).

Thyroid hormones in medication will never stop the autoimmune attacks, they just replace the thyroid hormones that your thyroid can't make. The antibodies can impact the way I feel and I often feel more tired and get sore throats when my antibodies are high usually due to stress. I find that stress, coffee and alcohol make my antibodies go through the roof for other people it is things like soy and gluten.

I think knowing that you have autoimmune disease helps you to understand your body better, for me it was a light bulb moment. It helped me understand why sometimes I get severe fatigue and I suffer when I take on to much. It makes me pace myself and I think if you find out you have it ,it may encourage you to take extra special care to manage stress better, get lots of rest and clean up your diet. These are all things that can help you feel healthier. But in regards to fertility, it's my understanding that the biggest factor is making sure your hormones (TSH,, FT4 and FT3) are optimal.

@Teddybear45
Your input is very interesting in regards to how the antibodies can impact the developing embryo and you had to have steroids - I didn't know that.

@Frazzlerock If you do the medichecks bloodtest, let us know how you get on x

Such helpful information. I can't thank you enough!

Interesting what you say about severe fatigue, I get this but I think it is my iron as that's often low (was turned way from giving blood last time as it was low and I didn't even realise as I'm so used to it!) , so I take Feroglobin daily and take two lots when on my period. Hopefully my thyroid isn't causing this. Weirdly I've had more energy since having my thyroxine reduced and I have lost weight. I thought it would be the opposite.

Anyway, thank you again. You've both answered my questions and really helped me understand all this a bit better. I have ordered the test and I will definitely let you know how I get on with it. I feel a bit closer to getting some real results now!

I took low dose steroids for 12 weeks, heparin for the entire pregnancy (I didn't have a clotting issue but as Teddy said it's linked to antibodies) and progesterone. Plus regular scans. This worked for me for 2 pregnancies. Prior to that I had 6 miscarriages. My GP fobbed me off told me I was unlucky and it was my age.

Ps just another thought. Being hypothyroid affects iron levels, and it's also closely linked to coeliac disease. I found I was coeliac too. Having a GF diet reduced my thyroid antibodies.

This thread has utterly amazed me. I have hypothyroidism and have just started ttc. I’m only on a really low dose of thyroxine (50mg daily) so assumed/hoped it wouldn’t affect me too much but so glad I stumbled across this thread. Thank you for all the info.

@Happythoughts

It's not the Levothyroxine that's the problem (its part of the solution). The problem is doctors not doing full thyroid panels and trying for 'within' range, not optimal. 50mcg is only a starter dose. Do you know what your levels are?

Less than 2.5 when TTC and throughout pregnancy is fine

@Happythoughts.
How long have you been on 50mcg of Levothyroxine? Also do you know what is causing your Hypothyroidism? If the Doctor has never bothered to do the tests or tested your T3 he is failing you. I always get a full panel done myself, I know my hormone levels off the top of my head and I also know what they should be to be optimal. Definitely check out the link for medichecks Thyroid tests that I posted above. Good luck in your TTC journey xx

I’ve been on 50mg since I was diagnosed 6 years ago. Have it checked yearly and it always comes back normal. I think I was borderline when first diagnosed.

I have never enquired about t3 and t4. So ideally my tag should be 2? I hat should my t3 and 4 be?

I’m definitely going to look into medichecks thank you so much x

So sorry to jump on this thread. Does anyone know what the issues are with TTC and thyroid? My TSH is 3 and more worryingly, FT4 is 12!

I only found this out a few weeks ago and so have self prescribed 25mcg of levothyroxine (yes, I know the dangers of self medicating). I also had a test for antibodies but I don't have them.

Thanks

Just wanted to add (having just gone through pregnancy with an under active thyroid) that when you don conceive (I really hope you do!) that you will have to put your dose up slightly immediately. I was told to put mine up 25mg straight away then make and appointment. I have been lucky enough tho to be under consultant care. Also I had an issue that I was throwing up so much I wasn't getting enough thyroxine so I had to increase my dose massively. It's therefore so important to get checked very regularly.

Fingers crossed for some good news op.

For those asking what the levels should be my latest results say the normal range is 0.35-5.5 for TSH and 10-19.4 for free t4. However my consultant prefers it to be under 2 and over 17 to be optimal. I haven't got my T3. Maybe I should get that checked too!

@Happythoughts123

You would not believe the number of people who get told their results are 'normal'. Normal isn't optimal. The range for TSH for example if 0.5-4.5. But for someone with Hypothyroidism, they say you should have around 1.0 on medication. If for example a person has say, a TSH of 3.0 this would indicate that their thyroid is beginning to fail, even though its still in range at this point. Many GP's are useless when it comes to Thyroid conditions. You get your blood test, the results come back, they look at the sheet of paper and see it in range and tell you it is 'normal' because it is in range. Also, you will never see the full picture of your Thyroid condition without FT4 and FT3 and GP's aren't allowed to ask for FT3 to be tested, I believe it has to be a consultant that does it.
When you said you are on 50mcg my first reaction is that you've been put on a starter dose and left there. I would almost put money on it that your results will come back, probably within range, so even Medichecks may not highlight it as a 'red' but that they are NOT optimal.
I feel really sorry for many of the people in the UK (I was diagnosed overseas), they are left undermedicated and often have no clue with their Doctors just telling them there results are 'normal.
The picture I've attached really shows how being within 'normal' range isn't enough. I just attached a second as the first one uses US measurements
Try and get the medichecks done and let us know how you get on xx