Endo saying I have to make a decision now because I’m 20 weeks pregnant

[Tginger]

Good afternoon everyone, I hope you can help me. I’ve been asked to make a decision pretty quick and would like your thoughts on this please.

My current levels:

TSH <0.05 [0.27 – 4.20]

FT4 15.00 [12.00-22.00]

FT3 5.80 [3.10-6.80]

I was on 125 mcg Levo and 15 mcg Lio for 3 years with bloods always being FT4 17-18, FT3 5.40-5.80, TSH <0.005.

Since I got pregnant, they increased my Levo by 25 mcg, so been on 150 mcg Levo and 15 mcg Lio for 3 months now.

Have seen an endocrinologist under paediatrics a couple of times now. At the third appointment at 20 weeks I was seen by a different consultant, who told me a completely new thing. If previously they were ok’ish to treat me based on my symptoms and FT4 and FT3 levels. Now he’s saying that in pregnancy they can’t rely on my symptoms and FT4/FT3 levels but only can adjust the dose based on TSH. [I don’t get why!]. He correctly said that Lio suppresses my TSH. [This is the first time I ever heard this from a doctor!]. Therefore, he said, I should stop Lio during my pregnancy so that they can adjust my Levo dose based on TSH. He said if I stop Lio, they will test me in 3 weeks and will increase Levo. Ok, I said, if you’re saying you’ll be adjusting Levo based on TSH levels, what if in 3 weeks my TSH remains low/suppressed? We will decrease your Levo, he said. So, I said, you won’t look at my FT4 level? No, he said.

He said my FT4 and FT3 indicate levels good for me but not for the baby and it is only TSH that indicates whether the levels are good for the baby. So… for a mother you dose by FT4 and FT3 and for the baby you dose by TSH? Yes, he said. My brain melted from this logic!

I don’t understand why in pregnancy they can’t prescribe based on FT4 and FT3 levels, and they were ok with it until 20 weeks but not anymore? I’m worried that after having my TSH suppressed for few years, it won’t get back in range just within three weeks and they will decrease my Levo rather than increase it.

I’m aware there’s no data to support combo treatment in pregnancy, but the consultant’s logic is unclear to me, I just don’t get it. 😢

[FallingInReverse]

I have never been hypo and pregnant but have done many deep dives on the topic.

1)But important to note that at 20 weeks your baby has now developed its own thyroid function. Before this the baby was relying only on your maternal thyroid hormones. So that’s a good thing for you to remember as you think about what you are managing to. Before it was without a doubt (but not only) your FreeT4 to ensure the baby had enough. Now the baby makes their own.

2) I am compelled to say that I agree with you that your doctor sounds confused and uninformed in illogical ways.

Your post ends with a question about trying to figure out his thinking. Not sure that’s possible… It’s really mixing up a whole bunch of stuff.

Or are you looking for advice on how to manage your dosing?

[Tginger in reply to FallingInReverse]

Hi, thank you for your response. As I was told it's my decison [thankfully], I need help making that decision. I've discussed this with my husband and we both disagree with the consultant and believe I should stay where I am. It's just that threat from the consultant, that if I don't come off Lio they won't know whether my Levo dose is enough for the baby, made me hesitate a little bit. Yes, looking for an advice on how to manage. I believe I could carry on monitoring my symptoms as well as FT4/FT3 levels.

[tattybogle]

it's not logic .... it's fear of being responsible for any adverse outcomes and potentially getting sued for allowing treatment that is not recommended by their guidelines.

in my opinion , messing around with someone's stable thyroid hormone regime at this point in a pregnancy is equally risky... probably more risky for you than for the baby at this point , as by now the baby should be making it's own T4/T3 , but someone dropping your levo dose cos your TSH didn't rise quick enough is very likely to make you feel unwell, and suddenly removing a T3 source that the body has become used to using , seems completely reckless to me , especially in the middle of a pregnancy.

if he was in the middle of a race and driving a petrol car , would he be happy if his pit lane mechanic suggested he wanted to try rebuilding its systems to run on electricity during a pit-stop? ... i suspect he'd tell him to 'bugger off, now is not the time to experiment with reprogramming my engine'

[Tginger in reply to tattybogle]

Thank you so much for replying. My husband basically said the same thing! It will be more stressful and risky to start playing with the medication now. It's funny [or not], the endo agreed with me that if he takes me off Lio, I'll start feeling unwell. But he's fine with that! Well, I'm not, I said 😂.

[tattybogle in reply to Tginger]

The medical establishment have conveniently forgotten that all babies born to hypothyroid patient s before about 1960 ish were born to mothers prescribed NDT throughout their pregnancy ....which obviously contains both T4 and T3.... and the T3 content in NDT is a higher ratio than humans naturally produce.

In the rather spurious reasons for turning their backs on NDT, i don't recall problems for the baby being mentioned as a reason ... presumably if there had been any evidence or even a suspicion of NDT causing problems for the health / development of babies/ safe use in pregnancy , they would have used this as part of their reasoning to persuade the NHS to move away from NDT , but they didn't.

[humanbean in reply to tattybogle]

The medical establishment have conveniently forgotten that all babies born to hypothyroid patient s before about 1960 ish were born to mothers prescribed NDT throughout their pregnancy ....which obviously contains both T4 and T3.... and the T3 content in NDT is a higher ratio than humans naturally produce.

The medical establishment also carefully avoids mentioning pregnancy in healthy people with healthy thyroids. They produce T4 and T3 as well.

[Stourie in reply to tattybogle]

Sssshhhh , don’t let anyone but us read that or that’ll be the next thing they pounce on Jo xx ☺️

[RedApple in reply to Tginger]

'the endo agreed with me that if he takes me off Lio, I'll start feeling unwell. But he's fine with that! '

Of course he is, he's not the one who's pregnant, and likely has absolutely no understanding of what being on the wrong dose/type of thyroid medication is like. Do what you and your husband feel is best, not what some 'jobsworth' endo says.

[jimh111]

Given your TSH has been very low for a long time it is unlikely to recover for several months. The suggestion to titrate by TSH in the short term is reckless.

[helvella Administrator]

I think the approach being pushed raises even more questions than leaving you on combination treatment!

Yes - these largely repeat what you have said.

1) What happens if your TSH doesn't rise as would be predicted? The only thing I can see is you ending up progressively more and more hypothyroid as your dose is reduced based on TSH only.

2) What about the effect of Human chorionic gonadotropin which can lower TSH? In particular, show me some research on the impact of HCG on TSH in pregnancy in someone who already has low TSH, and has had low TSH for an extended period?

3) How does the baby control your TSH? I simply do not get this bit at all.

[jimh111 in reply to helvella]

Q. How does the baby control your TSH? I simply do not get this bit at all.

A. With great difficulty, TSH does not cross the placenta (TSH molecules are very big).

[FallingInReverse]

It's just that threat from the consultant, that if I don't come off Lio they won't know whether my Levo dose is enough for the baby, made me hesitate a little bit

The baby makes its own now… a biological fact. Does he know that? That’s rhetorical by the way.

Also there is very little research and even less understanding of the role of T3 and exogenous T3 in pregnancy. The consensus (non medical, layman’s, experience) here is that one should carry on as they have with their T3 in pregnancy too.

As I said, I have no personal experience, so I will just point back to the other responses and note we are all directionally in agreement with you.

Do you have your recent bloods to share?

[Tginger in reply to FallingInReverse]

I think I put my reply in the wrong place

I remember reading about babies making their own hormones from week 20. So I didn't dream it!

My most recent results in the post are dated June:

TSH <0.05 [0.27 – 4.20]

FT4 15.00 [12.00-22.00]

FT3 5.80 [3.10-6.80]

The FT4 is not at my best but that's better than it was before my GP increased Levo to 150. My levels at the beginning of pregnancy were:

TSH <0.01 [0.27 – 4.20]

FT4 13.90 [12.00-22.00]

FT3 4.40 [3.10-6.80],

and I was feeling absolutely awful with muscle aches and extremee fatigue.

[SlowDragon Ambassador in reply to Tginger]

If anything you might need small increase in Levo …..say an extra 25mcg PER WEEK

Or possibly an extra 50mcg per week, split as 12.5mcg 4 days per week

And don’t mess with changing T3

what are your most recent vitamin results

[Tginger in reply to SlowDragon]

I thought I might need further increase in Levo. Obviously, nobody will prescribe that. However, will be doing blood tests privately and using my secret stock to increase if necessary. Thank you for your advise ❤️.

I haven't tested vitamins recently. Nobody seems to be interested. Tried speaking to my midwife, endo, obstetrician... no one is interested. They say as long as you're taking folic acid and Vit D, you're fine.

[Lottyplum in reply to Tginger]

Just a quick addition. I was hypo (Hashi) when pregnant with my second child (long time ago now+on Levo only) but went private as terrible 1st pregnancy. Saw consultant gynaecologist at every visit+he had my thyroid levels checked@every visit. I had no reduction in my Levo until near my due date. I know things may have changed somewhat now but just to say I gave birth to a healthy baby with no dramas!! Hope this settles your concerns a little.

[Tginger]

I remember reading about babies making their own hormones from week 20. So I didn't dream it!

My most recent results in the post are dated June:

TSH <0.05 [0.27 – 4.20]

FT4 15.00 [12.00-22.00]

FT3 5.80 [3.10-6.80]

The FT4 is not at my best but that's better than it was before my GP increased Levo to 150. My levels at the beginning of pregnancy were:

TSH <0.01 [0.27 – 4.20]

FT4 13.90 [12.00-22.00]

FT3 4.40 [3.10-6.80],

and I was feeling absolutely awful with muscle aches and extremee fatigue.

[samaja in reply to Tginger]

If you are a good converter in the main than increasing levo is the right approach but leaving T3 where it is. There are ladies in my other thyroid groups who were on T3 only during the whole pregnancy and had absolutly no problem so even T4 is not strictly necessary for the baby. Both your pre and pregnancy levels show some scope for improvement with Ft3 anyway so your endo should be looking at increasing not decreasing anything. Next time make sure you don't see him becuase he clearly has no idea what he is talking about despite knowing that TSH is supressed on T3.

[pennyannie]

Hello Tginger and welcome to the forum :

I can't imagine an experienced endocrinologist with knowledge ' in the field ' suggesting such a ridiculous solution to a problem that isn't even there -

though following his advice you will have a problem and he has already warned you that you will be made ill - and who wants or needs this when pregnant !!!

There is no point chasing a TSH - it doesn't read or respond to guidelines and time lines and may never ' perform or respond ' as per the instruction manual -

Why mess with something that is working for you ?

[Tginger in reply to pennyannie]

Hi, thank you for your response, it made me smile 😄. I used to be very confident defending myslef. It's now when I'm pregnant, it is presented as a whole different world I don't know anything about and it is easier for doctors to manipulate me because it is all different in pregnancy and "you can harm your baby if you don't follow what they say".

[pennyannie in reply to Tginger]

Though being pregnant and having a baby being one of the most natural things in the World -

with many women in less affluent countries giving birth at home and carrying on working as a hospital as where they go when ill.

Of course, you are not wanting to harm your baby - I totally ' get it ' - but you know your body best - trust your instincts :

Healthy mother - healthy baby :

Congratulations :

[humanbean]

Regarding vitamins in pregnancy, you might like this article from the British Journal of Midwifery :

britishjournalofmidwifery.c...

[radd]

Tginger

When pregnant sometime several dose increases are required and you are not waiting for the total cell saturation that the usual recommended six week blood test determines but an immediate assessment of thyroid hormones to ensure they are adequate in this moment for growing baby.

We know TSH is not always an accurate measure of FT4 & FT3 levels, and should TSH have been suppressed a few years there is chance it may make a delayed response or no response at all.

It is vital thyroid hormone levels are kept sufficient to prevent poor pregnancy outcomes. And baby is unlikely to be harmed by elevated thyroid hormones as they naturally raise significantly in mums with a working thyroid and baby is protected by placental expression of D3 converting excess T4 to RT3 and excess T3 to T2.

Previously before Levothyroxine and the ridiculous TSH notions, many mums gave birth to healthy babies whilst medicating NDT (T4 + T3 combo). If this were me I would refuse to stop FT3 meds as such a drastic change during pregnancy could bring risk to you both, and to dose by thyroid hormone levels regardless of TSH. I would also only aim to raise FT4 levels (Levo increases only).

Sorry you have all this worry when you are supposed to be enjoying your pregnancy and feeling well cared for. Unfortunately your consultant doesn't appear very clued up on thyroid hormone physiology ☹️. Can you ask to see the first endo?

[Tginger in reply to radd]

Thank you for you response, radd. It is very helpful. This endo is not the weirdest I've seen. Two months into the pregnancy, I had a consultation with another endo in the same department (whoever was on duty that day), and was told that because I'm pregnant I had to come off Levo completely!!! I was so shocked! Obviously, I refused to stop Levo. He was then very rude to me and dismissed me from the clinic, wrote to my GP advising I will no longer been seen by Endocrinology because I don't follow their recommendations. Unfortunately, where I live, you can't ask to see any specific doctor. You see a different consultant every time, which is silly in my opinion, as every time the conversation starts over again.

[radd in reply to Tginger]

Tginger,

I think humanbean has some research articles on medicating T3 during pregnancy. These could prove useful in retaining your meds.

[HealthStarDust in reply to Tginger]

What?! They told you to come off levothyroxine during pregnancy? Why?

[Tginger in reply to HealthStarDust]

Maybe because they are completely brainless? 😬

[HealthStarDust]

I am sorry you have all this going on.

I am afraid I do know much about T3 in pregnancy, except many health professionals do not like women in pregnancy to take it.

I agree with the other posters that dosing my TSH at this point may not be useful - and possibly harmful seeing as your endo has said they will decrease levothyroxine based on low TSH when your FT4 is on the lower end.

I have to say I am amazed this has only come up now in your pregnancy and you was able to continue on T3 during your pregnancy so far. Was it just an oversight somehow? They usually just stop the prescription.

[Tginger in reply to HealthStarDust]

I think I've been kept on T3 and haven't had my medication changed either way because doctors I see don't understand the condition and how to treat it. The GP admitted it straight away. They said we don't understand your condition and your treatment so it is for the endo to advise. At the same time, as I metioned in one of the replies above, one of the endos kicked me out of the Endo clinic and advised GPs should be dealing with it. Then, the other endo I saw in the maternity unit, didn't seem to understand T3 either so preferred not to change anything. I don't know whether I should laugh or cry! 😂

[HealthStarDust in reply to Tginger]

Yes. It’s pretty poor and I too have heard GPs say the same. But surely the Edno should since they would need to prescribe it? Oh wait, I may be getting confused. Do you self medicate your T3?

[Tginger in reply to HealthStarDust]

No-no, my Levo+Lio got prescribed by an NHS endo consultant. This endo had been prescribing the combo for me since 2021 but he left in January this year. So, my prescription is still under NHS and hasn't changed.

[HealthStarDust in reply to Tginger]

Wow! I am amazed they have not automatically withheld your lio.

[Tginger in reply to HealthStarDust]

please don't tell them!

[HealthStarDust in reply to Tginger]

🤣