I posted a while back whilst trying to conceive through fertility treatment and the concerns people were raising around me taking ERFA.
I have since fallen pregnant (yay!) however my fears are now a reality and the endocrine antenatal dr I have been referred to at Warwick Hospital has stated that she does not condone the use of ERFA and has told me to stop taking it IMMEDIATELY and to only take levothyroxine in order for her to oversee my pregnancy.
She stated that taking ERFA is NOT safe for the baby.
After telling her my experience with levothyroxine and the symptoms I would have (depression, anxiety, headaches) she didn’t really care and just kept repeating that she doesn’t condone it.
My current results are :
T4: 10.5 ( 9.7 - 24.7)
TSH: 0.36 (0.55 - 4.78)
T3: 4.2 (3.5-6.5)
If anyone can help lessen my fears surrounding this or even tell me honestly if they would stop taking ERFA then please I would just love everyone’s honesty surrounding this as I really don’t know what to do.
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Bex0991
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I see you haven’t had a reply in a couple of hours.
shout out to any 🇨🇦 Canadian members who have experience of Erfa and pregnancy..
If you wanted to go private you could try The Thyroid Clinic (online consult) with Georgina Conway or her team. I watched her webinar the other day and she favours Armour thyroid. Has 1000s patients so some must be pregnant. They could then advise your NHS team.
There is general hysteria in the medical community regarding NDT and T3 unfortunately. Not just with pregnancy. Mostly unfounded, but that’s where we are.
Next, I’m going to assume that your source of Erfa is private—that you pay for it, it isn’t NHS-prescribed?
If so, then thirdly, no one can make you stop taking Erfa. And that’s an important thing to take on board. You have every right to stay on a medication that’s given you your health and sanity back.
Many GPs and so-called endocrinologists are terrified of NDT because they’ve been told it’s unregulated, that it doesn’t contain consistent amounts of thyroid hormone. For NDT brands like ERFA and Armour that simply isn’t true.
In your position, I’d actually be quite nervous that switching to levothyroxine right now would cause a miscarriage. Messing with hormone dosages during early pregnancy doesn’t seem like a good idea to me. Erfa contains T4 and T3. The baby will be taking what it needs from your stocks of thyroid hormone. I think HumanBean gave a good explanation of why it’s probably nothing to worry about in a reply to your last post.
Most people with well controlled hypothyroidism don’t need to be under the care of an endo during pregnancy. You don’t need to see this person again if you don’t want to—it’s your body and your choice. It’s likely your GP and possibly your midwife may get grumpy with you but you’ve previously explained here how you felt on levothyroxine mono therapy and you can try asking that they monitor your FT4 and FT3 levels so that if a dose adjustment seems necessary you can do it. Failing that, you can make it clear that you’ve been monitoring your thyroid condition by yourself for years and are happy to continue doing it.
I don’t think it’s good enough for her to simply say she doesn’t condone it. I’d ask her to produce evidence that there’s an issue with taking Erfa. I don’t think she’ll be able to find any but on the off chance she does, well, I think many of us here would be interested to see it. What she’s actually saying is that she’s inexperienced in this situation and that’s not the same thing at all.
The following link would be too complicated for most of us (including me). But I found the Introduction to be of interest and the section on the Maternal Thyroid too :
I know the above links are probably a bit overwhelming. If any of them were published before, say, roughly 2015, I would suggest ignoring them - they might be getting a bit old now.
One thing to be aware of with regard to pregnancy and taking NDT is that women who were pregnant or wanted to be pregnant were taking the old equivalent of NDT (extracts of sheep thyroid, I think) from the early 1890s onwards - although obviously it was dried and converted into pills quite quickly to make it more pleasant to take. At the time there were no other treatment options for hypothyroidism. And there is no evidence that I'm aware of that taking such treatment for thyroid disease increased the risk of miscarriages or birth defects. Women took prescribed NDT right up until the 1980s in the UK. According to helvella there was a manufacturer of NDT in the UK up until 1985 (?) before it closed and almost everyone was forced onto Levo from about 1960 or 1970 onwards.
The problem with NDT is that many doctors are not familiar with it and therefore don't feel confident about treating women who take it. They often talk a lot of nonsense about a treatment that was used successfully for about 70 or 80 years.
The one thing I would say is that you can probably improve your chances of success (for yourself and your offspring) if you optimise as many of your nutrients as possible, since low nutrients are very common in thyroid disease.
Honestly can’t thank you enough for the quick replies and amount of information you’ve sent across.
I’ve taken this morning to read through all of the links provided and it gives me a wealth of information.
Jazzw Yes I pay privately for the ERFA which over the years has been a huge financial strain but it’s the only thing that makes me feel like I can function properly in holding down a full time job and participate in life in general.
Thank you for the research paper on ‘The Safe Use of Natural Desiccated Thyroid Extract for the Treatment of Hypothyroidism in Pregnancy’ has really put my mind at rest. Although I then looked into the Country Health website based in Cambridge and Dr Oliver Frey on companies house states his residence is Estonia. Regardless, the research is really positive for the use of NDT during pregnancy.
Regenallotment That’s the second time in the past week someone has mentioned Dr Conway to me so I will be getting in contact with her and hopefully she may be someone who is willing to oversee my thyroid results during pregnancy.
And asking for Canadian Members to get in touch would be brilliant as I’m very aware that there must be plenty of women in Canada who have taken NDT during pregnancy.
humanbean I didn’t realise there was once an NDT manufacturer in the UK , that’s really interesting and highlights that once upon a time it was the chosen method of thyroid replacement.
I will definitely be asking the endocronologist who I’ve been referred to on the NHS antenatal to highlight any research or cases of NDT having a detrimental effect to a pregnancy/ baby. I appreciate that little research has been done but telling me it’s unsafe surely needs to be backed up by physical results that have shown this? Instead of just fear mongering me into coming off NDT completely after 15 years of use - I would worry that my body would struggle/ go into shock with such a drastic change.
Thank you again to all of you for calming my fear a bit. At 9 weeks I know I’ve got a long way to go yet and I need to try and reduce my stress around this area.
I've no experience of Erfa or being pregnant whilst hypo but I would say stress is the last thing you need right now and that Endo threatening you and disregarding your well founded concerns about going back on Levo is about as helpful as a hole in the head.
I wouldnt want her looking after me either. She cant force you to do anything since you source your Erfa privately. Perhaps someone needs to remind her of patient autonomy. Could you ask for a second opinion from a less dogmatic Endo? Wishing you all the best with your pregnancy.
Thank you and I completely agree. I’m definitely going to get a second opinion.
The endo who prescribes me the ERFA (has done for years) has interestingly said to follow the direction of this NHS endo and move onto levothyroxine, she’s stated that in pregnancy the high oestrogen levels can improve symptoms anyway so I might be ok on levothyroxine …. it’s thrown me as I wasn’t expecting this response from her
Has your endo discussed your current FT4 and FT3 levels and what she’d expect them to be during pregnancy? Perhaps humanbean and Regenallotment can comment on the general advice given here regarding your FT4 at 5.33% and FT3 at 23.33% and a TSH 0.36 (0.55-4.78)
Agreed Noelnoel but expert help is required, I have no experience of this to draw parallels and am not medically trained. OP is best off seeking advice as suggested.
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