Hashimotos - levo to metavive : Hi my 13 year old... - Thyroid UK

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Hashimotos - levo to metavive

nikkilou77 profile image

Hi my 13 year old with hahimotos was on levo 50mcg.. she was on this dose since age 9.. just been advised to switch to metavive starting 1 tablet per day then increasing after two weeks .. any advice on monitoring this switch.. one week in from Stoppong levo and making the switch shes not feeling great .. Any experience of making the switch? Many thanks

16 Replies

If you type metavive into the search function on this site you will find posts about it and folks experiences.

SlowDragon profile image
SlowDragonAdministrator

Previous post you were advised to get her dose of levothyroxine increased by 25mcg through her doctor

It’s important that, as a minor, her treatment is all done with approval of her medics

healthunlocked.com/thyroidu...

Hi we are working with a functional doctor - just feel it’s useful to also have advice of people who have themselves been through this. With her current symptoms NHS doctors haven’t suggested an increase of levo as her stats are within range- they feel she is good on paper , but want to put her on beta blockers and other medication To solve anxiety sleep problems , fatigue etc.. they all told me not to waste time with diet and think I’m mad for going the gluten free /low sugar route which does not fill me with confidence !! Just trying to do best by my daughter .. we will of course be monitoring her bloods etc . Any advice gratefully received x

Cat013 profile image
Cat013 in reply to nikkilou77

Hi nikkilou77

My two children age 16 and 12 are both showing signs of Hashi’s. They are not yet medicated. The first thing I did was get a full vitamin check and a food intolerance test. It’s vital their vitamins and iron are optimal. My daughter was anaemic, had low folate and low vit D. Since she’s been on tablets for it all her fT3 & 4 have risen and she feels so much better.

With regards to your doctors thinking you’re mad to go gluten free etc perhaps they need some helpful guidance! You’re not mad at all. I would strongly recommend doing a food intolerance test for your daughter. I did mine with a 30% off code through Blue Horizon.

My son who is also a T1 diabetic (they are linked) only had a sunflower intolerance but my daughter had gluten and dairy. Since she quit gluten and dairy she’s felt so much better. She can feel the difference. I had a strong diary intolerance (I have Hashi’s) and felt way better quitting it. A test will show you what to focus on and what intolerance is most damaging. You might also find she’s not intolerant at all 😊. My son’s endocrinologist who deals with his T1 diabetes stunned me when on a video call recently I asked about his yearly blood test for his thyroid because of me and she immediately dismissed it saying it’s really no big deal for kids just popping one pill makes it all go away. it’s easy. Well my response was polite but up front and she back tracked a little saying well it’s harder probably for adults. A senior consultant Who deals with hundreds of children a day and she didn’t have a clue. Neither do two out of three of my doctors! In my experience they start prescribing lots of different medication for different things and rarely get to the root cause to deal with it as a whole and we end up in a mess.

Has she had her thyroid antibodies tested? That’s so important and many doctors don’t do them or fT3 unless pushed. Since we’ve been gluten and dairy free plus following Izabella Wentz’s Hashi’s protocol guide, optimising their vitamins etc all our autoimmune antibodies have come down. That’s key to fight off other autoimmune conditions in the future and to keep your daughter feeling well.

The problems she’s having with sleep, anxiety etc are all symptoms of under medication. I had them too. My anxiety was through the roof, blood pressure sky high and I couldn’t sleep. That side of things cleared up for the most part when I increased my levo. Personally I would not recommend beta blockers or any other medication until her thyroid medication is optimal unless there are other medical concerns. My concern is they just aren’t linking your daughters symptoms to her thyroid. “Normal” or “in range” doesn’t mean she’s optimally medicated. If you haven’t already I’d post all your daughters blood tests etc so experts on here can help you. I really hope your daughter starts to feel better soon. It’s really tough watching them go through this xx

SlowDragon profile image
SlowDragonAdministrator in reply to nikkilou77

Wether guidelines apply to children....I don’t know

But guidelines on dose levothyroxine by weight for adults on levothyroxine

Even if we don’t start on full replacement dose, most adults need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Essential to test vitamin D, folate, ferritin and B12 regularly

Strictly gluten free diet helps or is essential for high percentage of Hashimoto’s patients....conventional medics are often in complete denial about this

Poor sleep often low vitamin D/magnesium

jamesal0 profile image
jamesal0 in reply to nikkilou77

anxiety sleep problems , fatigue can be just side effects of levo, although normally at either end of the spectrum. I would get her into organised sport before I got her addicted to beta blockers etc. Couple on nights a week training and competition on the weekend does wounders for teenagers.

Anxiety sleep problems - Disable the WIFI , remove phone after 5pm - too much facebook etc

Gluten free 100% yes. plus Fresh home cooked organic meat, veggies, meals etc, no take aways, no TV dinners, no makeup, no sprays (fly, deodorant etc), wash occasionally with cheap soap - no show gells and exotic shampoos, minimal cleaning products in the house, get a dog, let it sleep in her bed and share doggy kisses, plant a garden and get grubby hands/feet.. Hashimotos is an autoimmune disease, it's your body reacting to all this junk we exposing it to in the modern world.

nikkilou77 profile image
nikkilou77 in reply to jamesal0

Thanks .. good to hear as we are doing all this - even bought a dog!! She’s a competitive dancer but finds training hard as we think it’s spikes her cortisol.. she is a happy girl and even when the anxiety hits she tries her best to cope she thankfully hasn’t had any depression ... x

jamesal0 profile image
jamesal0 in reply to nikkilou77

Hi Nikkilou. If you are already doing suggested. Maybe try NDT. It's not a magic potion like some would suggest and has it's own side effects. Where it wins is energy levels, sleep and no anxiety (unlike Levo) But you do have to start slow and optimise over a number of months. You cant use just use conversion tables 50mcg Levo = 60mg NDT. Not initially anyway. You would probably have to privately import it too - which has it's own challenges - although many on healthunlocked already do so. Re metavive I have no expedience but I have used a similar product, Thyro-Gold - it has a kick like a bull. I feel that the thyroid supplements have plenty of T3/T4 in them, but they can't advertise it as every batch is slightly different - ie not really what we call a medical grade drug , but if the world goes to poo and I can't get Levo/NDT, I could quiet happily live on Thyro-Gold or even raw thyroids from road kill...... :-)

If you scroll down and down to Related Posts -there is a post similar to yours. Maybe something helpful there 🌻

I see on your previous post that your daughters Ferritin is low - has she had a Full Iron Profile done ? Low Iron can be the cause of some of her symptoms. VitD ?

shaws profile image
shawsAdministrator

Was it a professional medical person who advised this switch?

I'm sorry your child was just 9 years old when first diagnosed. It is essential she has an adequate dose as our brain and heart need the most thyroid hormones and that's T3.

T4 (levothyroxine) is supposed to convert to a sufficien dose of T3.

A Full Thyroid Function Test is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

The method for blood tests for thyroid hormones is:

Always the very earliest appointment:

Fasting (she can drink water)

Allow a 24 hour gap between last dose of levo and test and take afterwards.

Doctor should also test B12, Vit D, iron, ferritin and folate.

Everything has to be optimal.

I have no experience with thyroid disease in children, but Metavive is a supplement with no declared hormone content. While it´s reasonable to assume it does contain some hormone - since nothing has been removed - you will never know exactly how much as the hormone content isn´t standardised in supplements. If you are working with a functional doctor, cannot s/he prescribe NDT or T3 (the latter to be combined with levo)?

If your daughter´s TSH drops below range (which is reasonable to assume if on Metavive since it´s bound to contain some T3, and T3 tends to suppress the TSH), you risk running into problems with your daughter´s GP (doctors tend to freak out if the TSH is suppressed).

Just wanted to update as we’ve had amazing results so far with the switch - anxiety gone and she’s feeling great .. Shes like a different girl !! getting bloods done in couple of weeks so will be interesting to see how levels are. Thanks all xx

Hello Nukkilou77

I was wondering how is your daughter doing now?

I have switch Levo(75mcg) with Metavive 11(1 in the morning) and Metavive 1(1 at lunch) under naturopath supervision.

I am one week in and not doing great either. Although more clarity, and energy, and no more mood swings, but 2 days with a bit of anxiety. :(

I also had some anxiety and this was the reasons looking for functional doctor.

How did you do the switch?

Many thanks in advance 🙏

Hi,

We are on metavive 1. She takes 1 morning and 1 at 4 pm . She has been doing really well but a little anxiety returning now and again so are going to add another half in at 12.

We were advised to increase fortnighlty until feeling optimal to start with.. We could tell when it was too much as she went really hyperactive .. Hence why we take at 4pm and not bedtime .

She takes at the same time as vitamin c and xinc. Also takes selenium every other day along with spatone to keep iron up .

Good luck - you will get there .. Just a case of getting the right dose and supplementing as necessary. Xx

Thank you so much for your response! If you don’t mind, what meant hyper ? I am feeling very agitated, and a bit anxious 😟

Meant to say we can tell if her levels off if she starts to feel anxious .. It seems to be the first sign for her.

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