Help for daughter weaning off NT

[Deb59]

Hi everyone

I would like to ask for help for my daughter. She can no longer buy Nature Throid and has decided to revert back to just levothyroxine and see how she can cope as she would like to try for a baby next year and she has been told that it would be easier for the endocrinologist to look after her if she was on levothyroxine. At present she is on 1.5 grains of NT and 175 mcg of levothyroxine. Since taking the combination her weight has dramatically increased, fatigue, etc. her TSH was high and her T4 was low, but T3 Was normal (sorry I haven’t got the blood test results to hand so can’t give you her correct figures. If I remember her TSH was around 6 and her T4 was 9) she has recently had a iron infusion due to low iron, takes Vit c, folic acid, b12, and vit d. She is due for a scope due to her PA and lack of absorbing.

The reason for taking both NT and levothyroxine was this was the best mixture for her as she needed the t3 and we are concerned that just taking levothyroxine will push her back to her days when she was just too tired to do anything and felt unwell. If this becomes a problem, is there an alternative to Nature Throid that you can buy easily in the UK (not cytomel as it was too strong and unpredictable for her)

She needs help to wean off the NT.

Questions: how long to wean off?

How should she wean off, ie should she increase her levothyroxine by 25 mcg every .5 grains decrease?

Many thanks in advance for your advice and help.

[Queeniz]

She really needs to go to her Doctor

[humanbean in reply to Queeniz]

I can guarantee that an NHS doctor would have no idea of how to translate an NDT + Levo dose into a Levo only dose.

[Queeniz in reply to humanbean]

You can Guarantee that ??? Lolol

[humanbean in reply to Queeniz]

Yes. I've never heard of a doctor who would have any idea what 1.5 grains of NDT would be "worth" in Levo terms. It is quite common for people to end up having their dose of thyroid hormone cut immensely when they go from NDT to Levo.

And doctors also often think that T3 is so potent it is like explosive for the body, so they might, for example, cut a Levo dose by 50mcg and replace it with 5 mcg T3.

[SlowDragon Administrator]

As per replies on previous post

healthunlocked.com/thyroidu...

Her TSH is extremely high for someone on 175mcg Levothyroxine and NDT

Has she had coeliac blood test done

Or is she already on strictly gluten free diet

Has she had lactose intolerance test or is she already on dairy free diet

Essential to regularly retest vitamin D, folate and ferritin

EXACTLY what vitamin supplements is she currently taking

On replacement thyroid hormones TSH should ALWAYS be under 2

Most people when adequately treated will have TSH under one

Before considering TTC her TSH must be under 2.5 and all vitamins optimal

[Deb59 in reply to SlowDragon]

Thank you for replying SlowDragon

Yes agree high TSH whilst taking so much NT and thyroxine.

Coelic blood test negative

Was on Paleo diet for a year and now on low gluten and diary. She found that the paleo diet did not change anything.

Yes, she has regular blood tests for vit d, folate, ferritin. Gastro dr ordered iron infusion as always low on iron.

She takes pharma nord vit d pearls, folic acid and b12 injection from doctors.

She is under gastro consultant list for scope, he believes her problems are from not absorbing properly due to her PA.

I read that NT was discontinued as the quantities in the grains were not adequate, so unreliable dosages.

The endo only deals with thyroxine, so if she is to be looked after by her, she needs to be off NT and revert back to thyroxine. She has about 2 weeks left of NT and I wanted her to wean off it slowly. We are on our own dealing with this, to be honest I don’t think the dr has a clue, hence reason asking the experts here!

thank you 😊

[SlowDragon Administrator in reply to Deb59]

Firstly strictly gluten free diet needs to be absolutely strictly gluten free to be effective

How much does she weigh in kilo

Guidelines on just Levothyroxine is approx 1.6mcg per kilo per day

Many hashimoto’s patients have MTHFR gene and do better on folate not folic acid

Perhaps also taking a separate vitamin B complex with folate in

Once folate level is good, just taking a vitamin B complex and B12 injections

How often is she getting B12 injections

Remember to stop vitamin B complex a week before ALL BLOOD TESTS as contains biotin and biotin can falsely affect test results

what are her most recent vitamin D, folate, ferritin and B12 results

If FT3 is low this results in low vitamin levels

Low vitamin levels results in low FT3

Chicken and egg

With multiple autoimmune diseases she is highly likely to need T3 prescribed alongside Levothyroxine

Email Thyroid UK for list of recommended thyroid specialist endocrinologists who will prescribe T3 (even in pregnancy)

[Deb59 in reply to SlowDragon]

She’s weighs 111.13 kilos so she should be on 175/200mcg (1.6 x 113.13= 180.80) she has put on over 5 stone in 18 months.

Will get her a folate supplement plus b complex and follow your advice.

She has b12 injections every 3 months

I will copy your message and show her. I haven’t got her blood tests to hand but will get them tomorrow.

Many thanks for your help and advice, much appreciated.

[SlowDragon Administrator in reply to Deb59]

She might need B12 injections more frequently

3 months intervals purely arbitrary/financial

Request trial on liquid Levothyroxine from Endocrinologist

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

[Deb59 in reply to SlowDragon]

Yes agree re b12 injections. Thats very interesting re liquid thyroxine, especially as it looks like she has absorbing issues. I shall get on the case. She needs to write to her endo with a copy of what you have added re gov. Uk Thank you very much.

[SlowDragon Administrator in reply to Deb59]

Government had to issue these guidelines this year as it’s been known for decades that many people can’t tolerate changing brand Levothyroxine

But majority of GPs, endocrinologists and pharmacists continue to totally deny it

Print out or email guidelines to endocrinologist

Liquid Levothyroxine is (relatively) expensive so they are reluctant to prescribe

Many members see significant improvement on liquid Levothyroxine

She may need to split liquid or tablets into 2 or 3 smaller doses through day

[Deb59 in reply to SlowDragon]

I will print out now. I reckon this will be her best option. This is brilliant, thank you so much.

[SlowDragon Administrator in reply to Deb59]

Make sure it’s lactose free

thyroiduk.org/if-you-are-hy...

[SlowDragon Administrator in reply to Deb59]

Does she always get same brand Levothyroxine at each prescription

Which brand

As she’s dairy free she MUST have lactose free Levothyroxine

Teva or Aristo are only lactose free tablets

Aristo Levothyroxine is lactose free (but doesn’t contain mannitol like Teva)

Aristo only available as 100mcg tablets

[Hidden]

As far as I know, you don´t have to wean off NT, but can just stop it and switch to levothyroxine. It´s adding T3 that you have to do slowly.If on 1.5 grains of NDT and 175 mcg of levo, she is taking a lot of T4 (over 200 mcg daily) along with 13.5 mcg of T3. Does she need mostly T4 and a little T3? Did she gain weight on levothyroxine only, or did the weight gain happen while on NT + levo?

A colleague of mine on Novothyral (synthetic T3+T4) was told by doctors she would need to go off it before getting pregnant and take T4 only throughout her pregnancy, the explanation given was that T3 could cause neurological damage to the foetus. I don ´t know enough about it, I´m afraid, but it seems many doctors recommend taking levothyroxine only during pregnancy. But hopefully others here with personal knowledge of thyroid hormone replacement during pregnancy will chime in!

What is the reason she can no longer get NT?

There are other brands of NDT available either with a prescription or from some online pharmacies without prescription, but they are all very expensive. Armour is by far the most expensive brand, but then there is Erfa, WP, and NP. All have been reported to be problematic due to various reformulations. I know some people in the UK get Erfa with a private prescription.

Then, there is one remaining brand of Thai NDT - Thyroid-S - but the price has skyrocketed in the past couple of years. 500 pills now cost around £200. But many are doing very well on it, even better than on prescription NDT.

[Deb59 in reply to Hidden]

Hi PurpleCat

Many thanks for your reply.

She gained weight whilst on both NT and levothyroxine. She needs both t3 and t4. Her gastro dr thinks she has absorbing problems so he is going to do a scope as she also has PA. Thanks for the info about not having to wean.

Yes I had read that people should just take Levo whilst trying to get pregnant. I will pass all this onto her.

Thanks again.

[humanbean in reply to Deb59]

There is a small amount of info on women taking T3 only or NDT throughout pregnancy and they were successful. These links are not in the best order :

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

library.wmuh.nhs.uk/wp/libr...

library.wmuh.nhs.uk/wp/libr...

Click on "View ePoster" : eprints.gla.ac.uk/137067/1/...

[humanbean]

At present she is on 1.5 grains of NT and 175 mcg of levothyroxine.

1 grain of NatureThroid contains 38mcg T4 and 9mcg of T3 according to this link:

stopthethyroidmadness.com/a...

There are differences of opinion of what the equivalence of T3 and T4 is. I would say that T3 is three times as potent as T4, so 9mcg T3 (from the NatureThroid) is equivalent to 27mcg T4.

Put all that together and your daughter is taking

(1.5 x 38 ) T4 + (1.5 x 9 x 3) T4 + 175 T4 = (57 + 40.5 + 175)mcg T4 = 272.5 mcg T4.

That is a high dose, and I don't know how the average GP will respond to a request for 275mcg Levothyroxine (which is the closest dose you'll get to 272.5mcg).

I wouldn't suggest that you need to creep up on the new dose of Levo. Your daughter could, theoretically, switch to 275mcg T4 immediately. But I wouldn't be surprised if your GP was difficult about it.

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On the subject of iron, you might find this thread of interest, and do watch the video :

healthunlocked.com/thyroidu...

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It would be worthwhile for your daughter to get proper testing before she switches to Levo alone. By that I mean TSH, Free T4 and Free T3 at a minimum. The cheapest supplier of this group of tests that I know of is :

monitormyhealth.org.uk/thyr...

and you can get a discount :

thyroiduk.org/help-and-supp...

[Deb59 in reply to humanbean]

Thanks very much for replying. The iron video is very interesting and I have copied it to my daughter. Yes my daughter is taking far too much medication. We have come to the conclusion that she has absorbing issues, possibly due to her PA. SlowDragon has kindly forwarded a link regarding liquid thyroxine. Until she can speak to her dr, she has decided to take 200 mcgs levo. she has recently had her first iron infusion and is going to have a scope to see if he can find reasons for not absorbing properly.

Many thanks for taking the time, very much appreciated.