I was diagnosed with Hashi while going through my first round of IVF in May. Endo put me on a very low dose of Levo (50mcg) and when my TSH was low enough, he told me to stop. IVF cycle failed and when I retested my TSH a few weeks later, it was 56. Started on Levo again and felt awful. Ended up getting pregnant spontaneously that month. Increased Levo to 100mcg and felt so bad - anxiety, heart palpitations, constantly sweating, couldn't sleep.
I did my research, read some books and decided to switch to NDT.
My last labs showed that my TSH was low (0.38) and my FT4 was also low (9.8 - range is 10-22).
I'm currently on 200mcg NDT, having just increased it a few days ago from 180mcg. My endo thinks I'm still taking Levo (she got angry when I said I was on NDT when I first started seeing her so it was easier to just tell her what she wanted to hear and then get the bloodwork monthly). But she will only order tests for fT4 and TSH.
So far, baby's growth has been good. Scans good, NIPT good. I'm feeling good, no symptoms of Hashi.
But seeing my t4 THAT low a few days ago had me worried and I'm wondering if 200mcg of NDT is enough or if I should increase higher.
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amansterdam
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I'd suggest you really need to have FT3 test included.
NDT will be adding T3....this lowers TSH and FT4.
You can't rush increases of thyroid hormone....it takes 6 weeks for it to settle in the system. It's not like taking paracetamol for a headache!
If you feel well on 180mcg NDT then I'd hold that for 6 weeks and test....you don't want to risk overmedicating
180mcg NDT = 3 grains
1grain = 38mcg T4 + 9 mcg T3
So 180mcg NDT = 114mcg T4 + 27mcg T3
This is a substantial dose
It's hypothyroidism that causes the symptoms, not Hashi's ....Hashi's causes hypothyroidism.
I think you need to be honest with your endo...it's not what you think she wants to hear that is important ....it's what she needs to hear that is. Your dose may affect other aspects of your care
She is responsible for your care...so you'll need to explain that you feel better with a different protocol.....and discuss!
We aim to take the lowest effective dose not the highest amount we can tolerate.
The advice to increase NDT was from my functional med doctor. I'm going to see if I can go another route to get ft3/rt3 tested. I was able to convince my GP to test but the last time I asked they gave me a really hard time.
rT3 isn't significant here ... rT3 is excess T4 which is transient...it is eventually metabolised and excreted.
Your FT4 hasn't been excessive!
T3 on the other hand is the active thyroid hormone. For good health it must flood every cell in the body by way of an adequate and constant supply.....I suspect yours may have been low and the T3 added in the NDT has been beneficial. Your T4 to T3 conversion may have been impaired
I'm afraid many medics are not clued up on T3 and having been on the receiving end of poor thyroid education it scares some of them, so they avoid it!!
So long as your FT3 is within range...or close to...you are unlikely to be overmedicated. (Unless the patient is like me and needs a very high dose. ..very rare....long story not applicable here!)
By about 12 weeks the baby's thyroid function should be taking over from the maternal supply
I'm sure you'll be fine... but since all now seems ok I certainly wouldn't increase NDT further.
We have to carefully listen to our bodies when taking T3.
Delighted for you that your pregnancy is now progressing well
NDT was first developed in the 1890s. It was the only treatment for hypothyroidism available for several decades, then eventually was the main treatment but not the only treatment until (roughly) the 1970s. There used to be a pharma company in the UK that made NDT until the 1980s, believe it or not.
There is no evidence of NDT ever causing mass infertility or miscarriage or stillbirth during the decades when lots of women were taking it, but despite this doctors often suggest that pregnant women are "killing their babies" if they take NDT because they believe that T3 (which NDT contains) is not safe. This is absolute nonsense, and should be ignored as the Big Pharma propaganda it actually is. T3 is the active thyroid hormone that everyone (even doctors!) have flowing through their veins.
If anyone is vile enough to say this kind of thing to you, ask for the historical evidence.
You could print out the poster and take it with you to appointments if you think anyone is going to tell you T3 is dangerous for babies.
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Another point to make is about being hypothyroid and pregnant.
Hypothyroidism reduces stomach acid in many patients. This then leads to poor absorption of vitamins and minerals. I would get your nutrient levels checked - in particular get an iron panel done if you can. Also, vitamin B12, folate, and vitamin D. I would guess that you have been tested for folate at least once already, but I'm not sure whether you would have had the other things checked.
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But seeing my t4 THAT low a few days ago had me worried and I'm wondering if 200mcg of NDT is enough or if I should increase higher.
Being on NDT tends to reduce T4 in people whether pregnant or not. The thyroid produces T4 as a pro-hormone - it's main function is to be a reservoir for being converted to T3, the active hormone. Since you are now taking NDT and are therefore getting T3 provided directly, your body doesn't need so much T4 to convert to T3.
So, I don't think you should worry about your low T4.
I read Stop the Thyroid Madness and they go into the history of NDT, so that was reassuring.
I'm also seeing a functional med doctor (the only way I can get NDT in the Netherlands) and she did a full vitamin/mineral panel about 8 weeks ago. My iron, ferratin and vitamin D were optimal and my B12 was within the normal range but on the lower side so I've been taking an additional B12 supplement in addition to the prenatal and vitamin D. It has methylfolate, so my levels for that were also optimal.
Hi Amansterdam, I just read your post and this respond. I have Hashi too but all levels are still in good range so doctors don't start any medications yet. Currently I'm not living in NL but planning to move back there, so I need to start to look for a good GP or endo or clinic that I can go to for routine tests and medication. Could you share with me which clinic you went to? Is this private?
You are already on a very high dose of NDT so I would not increase it. Also, as NDT contains a high proportion of T3 you would expect fT4 to be low. The manufacturers say 1 grain of NDT is equivalent to 100 mcg levothyroxine. You can't just add up the T3 and T4 content of NDT as it will have different absorption rates and half-lives to levothyroxine and liothyronine.In the second half of pregnancy the baby is making and regulating it's own thyroid hormones so getting more from the mother will not help.
Good luck with everything, sorry your first cycle wasn't successful. Heard quite a few people who start IVF, either have an unsuccessful cycle, or after being successful then spontaneously add another little person to the family. Do you take folic acid, , here (UK) there is a standard protocol take folic acid preconception and for at least first trimester, to help prevent neural tube defects. Thing is GP's don't seem to know that folic acid is not same as folate, so for instance when my folate came back as 2.7 ish they px folic acid not folate.
Peeps here are really supportive and knowledgeable , more so than any Doctor I have met ever. Oh btw etenox (gas and air) for relief in labour depletes B12 so might need a little boost for a period after little one arrives if you use it.
Hello Amansterdam. I'm sorry you are having these problems. My own experience with Hashsimoto's is as follows. If your TSH is low then you may not need any thyroid medication (low would mean you have hyperthyroidism). My own thyroid was checked last month and my TSH was high which meant that I was not on enough thyroid medication. I tried the dessicated thyroid and just couldn't tolerate it. I use levothyroxine. With Hashimoto's, as you probably know, your body is attacking itself and in the case of Hashimoto's, it's attacking your thyroid and destroying it. My thyroid was destroyed by my own body several years ago. There is no cure for Hashimoto's. Most doctors these days will only test T4 and TSH and they don't look at anything else. If you have an underactive thyroid, you should never get off thyroid medication. What they don't tell you is if you get too much thyroid medication it can cause heart attacks or strokes and too little can also do the same thing. So there is a delicate balance which is most difficult to achieve with Hashimoto's. Essential oils can help with thyroid disease by supporting your thyroid. Myrrh is one essential oil that can support your thyroid but essential oils do not cure Hashimoto's. If you go the route of essential oils, make sure that they are 100% pure. You should talk with your doctor about using essential oils to support your thyroid. DoTerra is one of the pure essential oils that I'm aware of. I don't know what the other brands are. I don't know your age but I do know that thyroid medication has the negative side effect of not allowing your body to absorb calcium. This can eventually cause osteoporosis. Too little calcium can cause kidney stones, weaken your bones and interfere with how your heart and brain work. So again there is a delicate balance. My twin sister also has Hashi's and she now has Osteoporosis because neither of us knew about the thyroid medication not allowing our bodies to absorb the calcium. I know this is a lot to take in but do yourself a favor and look for a doctor who specializes in Hashimoto's. Many endocrinologists follow what most other doctors follow with only testing the T4 and TSH but there are doctors out there who will do further testing. I wish you the best with your Hashi's and I really hope you can find a good doctor because I know from my own experience how miserable you can be when your body doesn't function as it should. Your pituitary gland is your master gland and it controls the thyroid gland. Taking yourself off of thyroid medication is not recommended. It can be very dangerous. I wish you well and I pray you'll be able to find a good endocrinologist who specializes in Hashimoto's.
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