Hi. I havent used this site for a long while. However I am now in great need. For the past two years I have been taking ndt to treat my hashimotos. It has been fine and recently i told the Dr who admitted they dont use that anymore but that it is fine as thyroid is thyroid wherever it comes from.
Two months ago I had a miscarriage at approximately 7 weeks, We found out as i had started bleeding, scanned and was only am empty sac.
I am now pregnant again, and be 8 weeks on Friday. Seen dr who has informed midwives but not heard from them yet. The problem is that my source of ndt has disappeared. It was available on a well known uk site but now removed. I am trying to order from other sources but their payment methods are not ones Ive used before and yet to complete.
I am panicking something awful...the last tests only revealed my tsh and free T4 level i can put results if anyone understands it. I asked about testing for others (which in the past i had several) but dr said they will not test for them.
I am currently on sick leave from my job, so am on limited funds. I am moving in two weeks and getting overwhelmed.
Everyday I just hope the baby is ok, and will not know for sure until another 4 weeks at the first scan at 12 weeks. The wait is unbearable.
Is there anyone here who takes ndt (natural dessicated thyroid) rather than levothyroxine? any pregnant women would be great too to have some input.
I hope this is ok. Many Thanks. Mel.
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woody
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Your GP should prescribe Levothyroxine until you can get NDT. TSH needs to be in the low-normal range 0.4 - 2.5 during the first trimester.
MasterCard and Visa have withdrawn merchant facilities from most online suppliers so you will have to use alternative money payment services. What is the payment method the supplier has asked for?
Irrespective of how you pay it is likely to take 3-4 weeks for NDT to be shipped from Thailand so you should arrange to take Levothyroxine in the meantime.
My tsh came back as 0.01 showing suppressed. But having posted results on a ndt forum others said it will show that as I am taking ndt and not levo.
Dr is aware im taking ndt but says he will 'stay out of it' and 'leave it up to me' as they dont prescribe it. Hasn't told me to stop taking it though.
He asked if id been referred to an endo, i said no.
I have some levo here already and also some weeks left of ndt. I am trying to purchase more at present. Payment methods include bitcoin, western Union. Neither of these Im familiar with but will have to try. I know it takes a few weeks to arrive from Thailand as have ordered before.
I am unsure what to do now as i dont know how the baby is doing and wont find out either for weeks. The only time they scan early is if you start to bleed. To say im stressed is an understatement.
This must be really concerning for you but Levo is better than nothing to be honest if have no additional choice - you could also maybe add levo for the baby?
Your tsh must be kept under 2 whilst pregnant to prevent risk of miscarriage and fetal abnormality. The baby needs thyroid hormone from you so normally on Levo, you would require a 25-50mcg increase at around 4-6 weeks to make up for the additional requirements. I imagine the same would apply to NDT allthough could not begin to tell you how much that would be. I was on T3 only when I became unexpectedly pregnant but had 50mcg T4 added for the baby at around 5 weeks and my levels remained stable for the rest of the pregnancy.
What were your test results?
If you are not absorbing, have you looked into why - stomach/digestive issues? I had problems with absorption and resistance until I went GF and have since lowered my dose by a third (not meaning during pregnancy). If you are not converting, then this might not effect the baby who mostly takes T4 from you and it's this need that prevents fetal abnormalities so it doesn't matter so much if you don't feel optimal and aren't converting optimally as long as baby is getting enough and you're well enough to carry pregnancy to full term - although bear in mind it is prob more complicated than this and I'm no expert. I was pregnant before I resolved my health issues so still had a lot of problems with conversion etc and other health issues during but my baby was fine as had enough thyroid hormones. I know your health does matter and may effect pregnancy but the baby's requirements are more important. Nutritional levels need to be optimal too - have you had B12, Folate, Iron (ferritin) and Vit D checked? Do you eat enough and healthily enough?
You need to be increasing your dose at 4-6 weeks and checking your levels monthly to ensure okay. I had mine checked including T3 every month whilst pregnant and had additional scans.
According to the NICE guidelines, GPs should be referring you urgently to a specialist endocrinologist rather than manage themselves. This applies to any woman trying to conceive or already pregnant.
Here are some links to the guidance on pregnancy and NICE guidelines that you should have a look at. It is useful for you to know as much as you can about it.
I am currently on my 4th pregnancy with an underactive thyroid.
For pregnancies 1 and 2 I self medicated by taking NDT (and extra T3.)
Pregnancy 3 I was on NDT, but I had a miscarriage at 10wks. I don't think this was caused by my thyroid, as all my no's were good.
My current pregnancy (30wks) I am under the care of a consultant, and I have switched over to Levo. (There were no issues with me using NDT, except that the cost/inconvenience of getting meds/blood tests, meant that I was keen to try Levo and finally I found someone who was keen to help me to do it in a sensible way. I.e. Weaning me off one and onto another, rather than coming off NDT all together, waiting 8wks, then starting again on Levo, which was my gp's crazy suggestion.) I have been on Levo since 16wks of pregnancy.) Unfortunately, I didn't get an appointment with my consultant till 16wks, which is way too late to help the baby. I knew this would happen, so I raised my dose a few times before I saw him, to make sure the baby was ok.
I agree with the others who have said, that you get to get a supply of Levo ready, just in case you are unable to find more NDT. You might not feel great on it (have you tried it before?) but at this point its important to medicate the baby. Start the fight now, to see a consultant. The sooner you start, you sooner you will get one.
Check out the website, hyperthyroidmom.com. It has lots of great articles, (I have included some thyroid/pregnancy articles at the bottom) and advice you can take to your GP/Midwife. Buy the book she wrote on pregnancy-it’s amazing! “Your Healthy Pregnancy with Thyroid Disease”, by Dana Trentini & Mary Shoman.
If you have just found out that you are pregnant, then increase your Levo/thyroxinne (T4) by 30% . The demand increases as soon as 4-6 wks into pregnancy and we are trying to avoid miss carriage. Then go to your GP and let them know you need blood tests every 4weeks until 20weeks. The results of these tests, will likely show that you need further increases. (Don’t increase without the blood tests to tell you how much you need.) Your blood tests need to include T3 results. If your GP won’t do this, get private testing done through “Blue Horizon.” As always, get copies of all your blood tests, and post on here for advice. Do not accept your GP telling you that you are “normal” or “within range” as very few of them know what is healthy for pregnancy. At 20 wks, the demands usually plateau and you will need tests/increases less often. (The book tells you how often.) As I also have Ges Diabetes and see the consultant all the time, I actually get 4 weekly thyroid tests.
Throughout your pregnancy, you should be offered extra growth scans, as people with under active thyroids can have smaller babies. (Usually only if you are without medication or under medicated.)
Taking NDT rather than Levo/thyroxine (T4) means instructions for increasing are not as straight forward, but can and must be done. To get advice, I emailed Lyn Mynott who began Thyroiduk: enquiries@thyroiduk.org. I put “Pregnancy Guidelines” in the subject line and she asked a doctor for me. He advised that I follow the instructions for increasing levo, but that I shouldn’t increase T3 at the same rate as increasing T4. (This was easy for me, because I take NDT plus extra T3.) You will read some articles saying that you shouldn’t take T3 in pregnancy as it crosses the placenta and some saying its fine-you will need to do your own research.)
The book I mentioned above, gives this advice about the TSH levels you need to have to have a healthy pregnancy. This is really helpful to take to your doctor.
First trimester: less than 2.5 with a range of 0.1-2.5
Second trimester: 0.2-3.0
Third trimester: 0.3-3.0.
TSH should be monitored every 4 weeks during the first 20 weeks of gestation, then once again between 26 and 32 weeks
If you are on NDT (Ie. Taking T3, your TSH should will be almost 0 with a low T4 in pregnancy (and non pregnancy)
Keep an eye on your B12 levels, as pregnancy places a high demand on these and people with an underactive thyroid are usually deficient to begin with. (You can’t overdose on B12, anything you don’t need you will pee out. A bit of a waste of money, but not dangerous!)
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