Ndt dosage advice : Hello. I have just received... - Thyroid UK

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Ndt dosage advice

carolinegodlonton profile image

Hello. I have just received my order of Thiroyd and am a bit nervous about how much to take. I'm currently on 100mcg of Levo but my T3 is still below range after 5 months of meds. I'm very symptomatic and having to stay off work too often for feeling very ill. My pulse rate still 50 and blood pressure 100/60. Low temperature too. So, do I reduce levo or continue as is and just add Thiroyd as I'm surely short of both T4 and T3. Please advise. Thank you.

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carolinegodlonton
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15 Replies
RedApple profile image
RedAppleAdministrator

carolinegodlonton, Can you please post your most recent thyroid test results (TSH, FT4, FT3) whilst taking 100mcg levo. This will help members to offer their thoughts on how to proceed with your NDT.

carolinegodlonton profile image
carolinegodlonton in reply to RedApple

Tsh 1.26(0.35_5.5.)

T4 14.2 (10.0-19.8)

T3 3.4 (3.5-6.5)

I'm due for more bloods on 27Aug but can only see doc after 15 Sep. Just can't wait that long and that's why I decided to self source ndt.

Thanks

RedApple profile image
RedAppleAdministrator in reply to carolinegodlonton

How long had you been taking the 100mcg of levo when those bloods were done? Those results suggest you need a higher dose of levothyroxine.

carolinegodlonton profile image
carolinegodlonton in reply to RedApple

I've been taking 100mcg for 5 weeks and was trying to work out how many mcg T4 were in 1 grain of Thiroyd as I know I need an increase but I also was concerned about the level of T3 and a conversion problem. I started in March on 25mcg and am on 100mcg now and T3 has decreased. I'm just so confused.

RedApple profile image
RedAppleAdministrator in reply to carolinegodlonton

Personally, I think you're trying to rush things with jumping down the self medication with NDT route at this stage. This is not an illness that is easily and quickly resolved, regardless of which type of thyroid medication you take.

Your body cannot convert sufficient T3 if it doesn't have the T4 to convert from. It takes time to reach an optimal dose of any thyroid medication. I feel you really should wait to get your next blood test done and see where those results lie, and then probably try an increased dose of levothyroxine.

If you dive in with the NDT now, you will likely confuse your situation even more. Especially when you consider that people react differently to different brands of thyroid medication, and have to work through a trial and error process to find which one works best for them.

carolinegodlonton profile image
carolinegodlonton in reply to RedApple

Wow. I thought I was being patient but obviously not. So I will increase levo next time I see my doc. At what stage or at least how long do I wait till I decide to look for change. I know what my levels should be according to this wonderfully informative sight but they just seem so far off. Thank you for your reply. Xx

greygoose profile image
greygoose in reply to carolinegodlonton

At least until your FT4 is up around 18.

You've only been on thyroid hormone replacement for about 4/5 months. I'm afraid it usually takes a lot longer than that to find the right dose. So, no, you're not being patient. lol

1 grain of NDT is about 38 mcg T4 and 9 mcg T3. They say that is equal to about 100 mcg levo. BUT, it's not as simple as that. You cannot give an exact equivalence because it depends how well you convert. If you don't convert well, 100 mcg levo isn't equal to very much. Which is why you need to get some more T4 into you to see how well you convert before deciding on an appropriate dose of NDT. It also depends on how you feel. Once your FT4 gets to about 18, you might find you feel just fine on that. :)

SlowDragon profile image
SlowDragonAdministrator in reply to carolinegodlonton

Were these results from after 6-8 weeks on 100mcg Levothyroxine?

If so your results show you need 25mcg dose increase in Levothyroxine. FT4 is too low and obviously FT3 dire

Also essential to test vitamin D, folate, ferritin and B12. Very likely some of these are too low

You really don't want to change anything until you get bloods tested

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that 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 eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Have you had vitamins and antibodies tested?

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).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Levothyroxine should always be taken on empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and more effective taken at bedtime

All medication at least two hours away from Levo. Some like HRT, PPI's, magnesium, iron or vitamin D, at least four hours away

verywellhealth.com/best-tim...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

carolinegodlonton profile image
carolinegodlonton in reply to SlowDragon

Thank you for your reply. I was supposed to see my go on Friday but she cancelled and now I'm away then she is away so that's why the long wait to see her. My results were after seeing her and increasing to 100mcg with no improvement in symptoms. My impatience is due to my job being a full time housekeeper and energy lacking to continue doing it anymore. Sometimes I just can't get out of bed. It's really quite worrying.

carolinegodlonton profile image
carolinegodlonton in reply to carolinegodlonton

Meant to say I did the right thing according to your advice about when to do tests and fasting etc. I am also gluten free and eat a healthy diet and take vitD and but B12, selenium and zinc. I'm not overweight.

SlowDragon profile image
SlowDragonAdministrator in reply to carolinegodlonton

Until dose is increased high enough to get FT4 in top third of range, you won't know if you need to add T3

Dose often needs extremely fine tuning.

What brand of Levothyroxine are you currently taking?

Is this always same brand?

Have you had vitamin levels tested?

carolinegodlonton profile image
carolinegodlonton in reply to SlowDragon

I'm taking brand name Almus. Have changed to this fro. Teva which gave my stomach a hard time but fine on this. My vitamin levels were average but in range as per my gp but I'm supplementing to improve them. She didn't do foliate though.

SlowDragon profile image
SlowDragonAdministrator in reply to carolinegodlonton

If you supplement a daily good quality vitamin B complex, this would improve B12 and folate, as well as all other B vitamins ........one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

carolinegodlonton profile image
carolinegodlonton in reply to SlowDragon

I'm currently taking Patrick Holford Connect, but I see it has folic acid in, and not folate. I will change to one that you have recommended. Thank you for the interesting info.

silverfox7 profile image
silverfox7

You can't tell whether you are converting well once you introduce any form of T3 as results are then read differently and FT3 is then the only reliable value so best to keep well away from that until you have sorted any conversion issue. Yes it can take ages to sort it out but it takes a lot longer if you do things in the wrong order which can result in having to step back and start again. Patience is difficult, you aren't alone in that, but keep telling yourself you need to tread slowly and it's the means to wellness.

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