This is the first time I’ve posted and I’m hoping some people in the thyroid community might be able to share some knowledge.
I’ve been taking Erfa for 12 years now, the reason being that I feel awful on Levo, my symptoms on Levo include severe depression, anxiety, inability to think straight, headaches, acne and lymphatic problems.
I’m now 33 years old (diagnosed when I was 20) and I’ve been trying to conceive for 2 years.
Every endocrinologist I see, including my Gp tells me that I must be on levothyroxine in order to conceive because it’s only levothyroxine that crosses the placenta. Although I doubt they have done any studies on whether Erfa crosses the placenta or not? Basically, the resounding response is I have to take levothyroxine for a healthy pregnancy, despite the fact that I can’t function like a normal human being when taking it.
Does anyone know of any specialists (endocrinologists) who prescribe Erfa and also help with fertility/ pregnancy?
Also if anyone has had a similar struggle or can share any knowledge regarding this I would be really grateful as I just feel like there aren’t any other options Gps are willing to prescribe but levothyroxine.
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Bex0991
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So we can offer better advice, can you share blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
I would definitely recommend you test FT3 and key vitamins privately (eg Medichecks or Blue Horizon) prior to seeing a specialist. If you have these tests taken in a private hospital they will invariably cost more. This will give you a full picture of your thyroid health.
I am a midwife, and I’ve found that women do better on NDT to conceive, during pregnancy, to avoid issues during birth like premature rupture of membranes (which lead to further interventions like induction augmentation and instrumental delivery and C-section) on NDT over Levo. Additionally some mothers will have lower milk supply on Levo making breastfeeding impossible. In my experience NDT (ERFA) is far far superior.
Thank you so much for replying, really appreciate your message and it’s honestly one of the first times I’ve felt like I can breath a bit easier and stop worrying as much.
Every endocrinologist I see, including my Gp tells me that I must be on levothyroxine in order to conceive because it’s only levothyroxine that crosses the placenta. Although I doubt they have done any studies on whether Erfa crosses the placenta or not?
There have been studies on placentas after babies have been born. (It would be unethical to do testing before then because it could be dangerous for the baby.) They tested the thyroid hormones in the placentas and found that the T3 levels were very low.
What they failed to take into account is that by the time a baby is born their own thyroid has been functioning for many weeks and they are no longer reliant on the mother for their thyroid hormones. You might find this link encouraging. :
To view the poster in the top right of the page at full size, just click on it.
I’ve been taking Erfa for 12 years now, the reason being that I feel awful on Levo, my symptoms on Levo include severe depression, anxiety, inability to think straight, headaches, acne and lymphatic problems.
I could suggest several possible causes for those symptoms.
1) You are under-dosed on Erfa.
2) Unlikely, but you could be over-dosed.
3) Your Free T4 could be fine but your conversion of T4 to T3 could be poor. T4 is a pro-hormone i.e. it is the raw ingredient needed by the body to produce T3, T4 has little activity by itself. T3 is the active thyroid hormone needed by every cell in the human body, so low levels are responsible for the most (or possibly all) symptoms of hypothyroidism.
4) Your doctor has probably been treating you based on your TSH only, and has not tested your Free T4 or Free T3. Treatment based on TSH often fails to be an adequate treatment.
5) Your levels of serum iron and/or ferritin (iron stores) could be too low. Other possibilities are low B12, low folate and low vitamin D. Possibly low zinc/high copper or high zinc/low copper (usually low zinc/high copper). Low selenium.
I would suggest that you get private testing done of thyroid-related stuff as well as nutrient levels - ferritin, vitamin D, B12 and folate are usually the first ones to get done.
I think you should stop trying to conceive until you have optimised your thyroid treatment and thyroid hormone levels, as well as the nutrients that have been mentioned. You will increase your chances of conception and reduce your chances of miscarriage by doing so.
Thank you so much for your response. I’m booking the Medicheck blood test , thank you for linking that.
I’m taking a prenatal supplement daily for along time now which contains folic acid, vitamin D, B12, selenium and other vitamins, so I would hope my levels of these would be good.
Your comment regarding the babies thyroid functioning independently from the mother is something which someone else has told me and they stated that I could try and take levothyroxine in the 1st trimester and then after that point the babies thyroid would be functioning and I can then decide if I want to go back onto just Erfa ? I’m not sure if this is correct and would be advisable but if it keeps the NHS fertility specialists and endocrinologists happy that I’m atleast taking ‘some’ Levothyroxine as well as the Erfa then it could be a compromise.
CountryMidwife I don’t suppose you know of any women who have done the above ^ in just the first trimester?
regarding the babies thyroid functioning independently from the mother is something which someone else has told me and they stated that I could try and take levothyroxine in the 1st trimester and then after that point the babies thyroid would be functioning and I can then decide if I want to go back onto just Erfa ?
You might find this link of interest on the subject of thyroid development in the womb :
In my opinion, it would depend on how well you felt whether you should change your thyroid hormones. I would suggest that you keep major changes to your thyroid treatment to a minimum during pregnancy. By which I mean, once you've stopped Erfa and gone on to Levo, then gone back to Erfa, two major changes within one pregnancy might be a problem. In your shoes I would have stuck to what I knew worked (the Erfa in your case), and would have just kept tabs on the dose and TFT results rather than chopping and changing the actual product.) If your Free t4 and Free T3 are good while on Erfa I can't see a justification for changing it to Levo only, despite what the doctors say. But be aware I'm not a doctor, nurse or midwife.
There have been some members of the forum on NDT or who have taken T3 with or without T4 during pregnancy and medical staff - doctors, nurses, midwives - have been really horrible to them, telling them they are killing their babies. It's nonsense, but there is nothing people can do about the poor behaviour (that I'm aware of), so they just did their best to ignore the awful things that were said to them.
So the baby’s thyroid is developed at 8 weeks and yes it produces thyroid hormones but if the mother doesn’t have enough, she can take thyroid hormones from the baby to keep the pregnancy. It’s really important to ensure you’re adequately dosed. My clients, I put on NDT because this works better. I don’t know of anyone who did a combo NDT and Levo. I wouldn’t do anything just to make a doc happy when it comes to your health. Also for folate; please take methylated folate NOT folic acid.
I’m still in the process of trying to conceive which is why I want to get everything steady and consistent now.
I appreciate your comment about not switching on and off different meds during pregnancy. NDT would be consistent throughout but I was just considering the potential of adding in a small dose of levothyroxine in those first 8 - 12 weeks aswell as consistently taking the Erfa , and unfortunately I would purely be doing this out of the fear factor of being told I would be damaging the baby if I didn’t take levothyroxine, which as you say CountryMidwife , I shouldn’t be doing it just to keep a dr happy.
Thank you for the note on taking methylated folate not folic acid!
I’ve booked a Medichecks private blood test to get a good over view of my levels whilst I’m just taking NDT
"... because it’s only levothyroxine that crosses the placenta."
plainly nonsense .. i suspect they might have meant 'it's only T4 that crosses the placenta'... (which is not proven either) .
if it was 'only levothyroxine (LT4) ' that crosses the placenta rather than T4 from any source then babies born to mothers taking NDT (T4+T3) for the decades before levo was commonly used .... would have had 'no T4 at all' during the first few mths of their gestation ... and the consequences would have been significantly bad .
Thank you for your reply and yes I completely agree, before levothyroxine a lot of women would have been solely on NDT and I would like to hope they conceived and had healthy babies at the end of it.
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