I just had another underwhelming appt with another endocrinologist. I told him that levothyroxine wasn't working for me so I have now got a private prescription of NDT, I have been on it for 2 weeks. He said that it was dangerous to take NDT as I am trying to get pregnant. He also said that I can't take levothyroxine until they have rules out adrenal fatigue through a synacthen test (my 9am cortisol is low). Does anyone know if NDT will effect my chances? We are doing IVF in August.
I'm not very up on NDT but it's been used for over 100 years. If his mother was hypothyroid she would have been on NDT. Humans secrete NDT although with less T3 than pigs. Just like levothyroxine it's the dose that matters.
As you have already taken levo and NDT you don't need a synacthen test to show you can take thyroid hormone.
If your doctor suspects adrenal insufficiency they should check this before you take thyroid. Minor adrenal impairment recovers when hypothyroidism is treated so I don’t see the point of testing, also a synacthen test wouldn’t detect minor adrenal problems.
First how long were you on Levothyroxine and how high was dose increased to?
Your high antibodies confirm you have autoimmune thyroid disease
Low vitamin levels are EXTREMELY common with Hashimoto's
Absolutely essential to test vitamin D, folate, B12 and ferritin asap
Good B12 and folate are essential for any baby's development
Before even considering TTC TSH should be under 2.5 and stable, with all four vitamins optimal
Bloods should be retested 6-8 weeks after each dose change
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
If/when also on T3, or NDT make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
The aim of Levothyroxine (or NDT) is to increase the dose slowly (Levothyroxine increased in 25mcg steps upwards) until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients need somewhere between 100mcg and 200mcg Levothyroxine. Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo)
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
while still eating high gluten diet Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Thanks very much for these helpful comments. I was on 75mg of Levothyroxine for 12 weeks. I saw a private doctor who said I was having trouble converting and put me on NDT. My Tsh has come down to 0.7 this week but T3 is still Low. My vitamin results are as follows:
Ferritin 124 ug/L / 5-204 range
Vitamin B12 736ng/L / 189-883 range
Serum Folate >20 ug/L / 4.8 - 19 ug
I have been gluten/dairy/soy free for 12 weeks and AIP diet for 3 weeks So far
Hi can I just ask ok it of curiosity also have you hormonal issues aswell like endo or pcos syndrome estrogen dominance etc? And what tests did the private doctor do to determine you can't convert correctly?
Hello, no there are no other issues we have found as yet. The private doctor only did the full thyroid panel. My ultra sound showed tiny nodules on my thyroid and also it was inflamed. I believe my trigger has been over exercise (Crossfit x 5 a week) and a low cal diet silly me!
He believed I wasn’t converting as TSH was high T4 in range and T3 was low.
What dose where you on levo ? And what brand of NDT are you taking ? I am not sure what the reason would be whether it would be excercise and diet but it sound alike if your taking levo and tsh not improving and T4 high with low T3 then there is a conversion issues but not sure if reason why there is a conversion I know mine is likely due to hormonal imbalance as I have pcos and estrogen issues , what kind of diet are you on now AIP? As your antibodies are quite low even tho they are elevated slightly which is positive.
Mine are tpo >1300 and thy abs >298
I would concentrate on eating the right foods aip and doing gentle excercise and getting your thyroid levels optimal NDT should help just get a test in next few weeks to check are your symptoms reducing how are you feeling at the moment? You have a few weeks till August so unless you feeling really unwell I would concentrate on lifestyle changes and elimating food triggers and doing gentle excercise to help and get your levels checked in next few weeks incase you need to adjust your dose.
What was the reason your endo said NDT was dangerous when trying to conceive as I have just changed to NDT this week hence why I wanted to know the brand to see if it was better than the one I am currently trialing but I would like to try for a family in the long term.
Thanks for your comment! I have now stopped taking levo and am concentrating on trying to get my dose of NDT right, I am on Armour Thyroid. I am feeling ok but my metabolism is very slow - pulse 53, temp 35.3, weight doesn't budge (even on AIP). From what I can tell the endo is saying what most NHS drs will say and that is that NDT is unreliable and that comes from a big pharma report from many years ago. I was under the impression my anti bodies are very high, it's so hard to know without something to compare to. I will get my levels checked again next week as that will be 1 month on AIP, hopefully antibodies will have reduced further.
Are the thyroid results you have posted when you were taking Levo? If so there is room for a dose increase. If on NDT then they are all over the place. It can take a while to get things where they should be on NDT, results are read differently so I would be tempted to fine tune Levo more than change to something you aren't as familiar with.
These results were after 12 weeks on Levo. I have now switched to NDT (3 weeks in) TSH is at 0.7 but I haven’t had a full panel yet. I am on 1 1/4 grains. Shall I stick here for a bit longer ?
I’m on ndt and doing ivf. They were keen my Tsh was below 2 and preferably under 1.5. Most insist on this because higher tsh has been linked with miscarriage. So you need to get that down. Which means you may need to increase the dose of ndt. Good luck x
There is a team in Cardiff studying this. I was at the conference at St Thomas' 10th May and they were saying women should increase their doses before they get pregnant.
The endo probably said NDT was dangerous because he is unfamiliar with it and has heard the scare stories put out by big pharma that NDT doses are un-titrated or not always the same.. Don't worry...
Dr Onyebuchi Okosieme,
Thyroid Research Group, Cardiff
University
This is the cardiff guy.. best thing, (as you won't get him) is to call the cardiff midwifery service and ask if you can have their leaflet on getting pregnant with Thyroxine..
I'm sure they said it's dealt with in their diabetic pregnancy clinic so you could try them
They've done some very good research and they definitely said take lots and lots before you get pregnant...
Yes, there's only one supply of eggs which are there from birth. Once they run out that's it. This why older fathers are more likely to pass genetic conditions that older mothers. Sperm is continually produced and more likely to be mutated as the father ages. The eggs are 'young' and so less likely to carry mutations. Of course an older mother has a more challenging pregnancy.
I am sure two difficult births caused my hashimotos. You already have thyroid condition. It took me years to recover. If you have a difficult birth ,cesarian, forceps etc on top of thyroid it could ruin your life. Think carefully. You won't be able to get rest with a baby
'It starts with the egg' is a good book to read about how to improve egg quality ahead of ivf .. touches on thyroid stuff, as well as the most up to date research on vitamins. It explains how - even though eggs are there from birth - it’s possible to improve their quality in the 3 months prior to ivf and how.
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silly me! 
Thyroid and trying to conceive baby 2
Going to give NDT a try
Trying to conceive and very high TPO antibodies?
Anxiety trying to change to NDT
