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[Fourwhitesheps]

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[Fourwhitesheps]

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[SlowDragon Administrator]

as per previous post a month ago

A few questions first

Which brand of levothyroxine are you currently taking 

Do you always get same brand levothyroxine at each prescription 

Do you normally take levothyroxine waking or bedtime 

Any other medications or supplements must be at least 2 hours away from levothyroxine 

Was test done early morning, ideally around 9am and last dose levothyroxine 24 hours before test 

Did you know you have Hashimoto’s?

As you have high thyroid antibodies, request coeliac blood test if not already on strictly gluten free diet 

Ft3 is low …..at only 29.7% through range

improving low vitamin levels frequently increases conversion rate of Ft4 to Ft3

Exactly what vitamin supplements are you currently taking

Aiming for vitamin D at least over 80nmol and around 100-125nmol likely better

[Fourwhitesheps in reply to SlowDragon]

100 mg Accord, 25 mg Teva always so been on same brand since 2005 taken first thing in morning with no other medication an hour before food.

Test done 9.05 am no levothyroxine for 24 hours.

No idea about hashimotos never had antibodies tested before. No vitamin supplements at present.

Thank you for your reply.

[SlowDragon Administrator in reply to Fourwhitesheps]

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Medics tend to assume all hypothyroidism is autoimmune

As they don’t treat the autoimmune aspect they consider it irrelevant

But to feel well you need to improve low vitamin levels and always worth trying strictly gluten free diet and/or dairy free diet

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 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

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[Fourwhitesheps in reply to SlowDragon]

thank you

[SlowDragon Administrator in reply to Fourwhitesheps]

Low vitamin D

Government recommends everyone in U.K. supplements vitamin D October to April

Do you normally supplement through winter?

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Suggest you try 2000iu or 3000iu daily and retest in 3-4 months

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Fourwhitesheps in reply to SlowDragon]

thank you will order some

[SlowDragon Administrator in reply to Fourwhitesheps]

Teva brand levothyroxine upsets many people

Many people find Levothyroxine brands are not interchangeable.

 Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free. May 

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

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. 

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an 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 perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before test 

Increasing number of members find it smoother/more tolerable to split levothyroxine as two smaller doses, half dose waking, half dose at bedtime. 

Only change one thing at a time or add one supplement at a time or you can’t tell what’s helping

[Fourwhitesheps in reply to SlowDragon]

thank you

[pennyannie]

Hello Fourwhitesheps and welcome to the forum.

The accepted conversion ratio when on T4 monotherapy is said to be 1 - 3.50 - 4.50 - T3/T4 with most people feeling at their best when they come into this range at 4 or under.

So find out how well you are converting the T4 - the storage hormone into T3 the active hormone that runs the body you simply divide your T4 by your T3 and I'm getting yours coming in at around 5.50 showing very poor conversion of Levothyroxine.

Your own ability to convert T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D and inflammation, thyroid antibodies, any physiological stress ( emotional or physical ) depression, dieting and ageing can down regulate T4 to T3 conversion.

We generally feel best when our T4 is in the top quadrant of its range as this should in theory convert to a good level of T3 at around 60-70%through its range.

It is acceptable to run a T4 slightly over range if this gives you a decent level of T3 but this isn't helping you.

What would help you is a small reduction in T4 and a prescription for T3 - Liothyronine which is said to be around 4 times more powerful than T4.

You will need a referral to an endocrinologist to assess your need for T3 - Liothyronine on the NHS and I am afraid it has become a bit of a postcode lottery manly die to financial constraints than medical need.

Thyroid UK the charity who support this forum and where you can find ' all things thyroid ' also hold a list of patient recommended specialists and endos both private and NHS which will be useful and save you some time if you choose to go this route.

Please email admin at Thyroid UK - thyoiduk.org for a copy.

You may like to read further around Hashimoto's auto immune disease as this disease systematically destroys your thyroid gland function and it will become and already is showing a need for both T3 and T4 thyroid hormone replacement.

A fully functioning working thyroid gland would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

Full spectrum thyroid hormone is generally required as the gland fails in order to restoreT3/T4 hormonal balance and most doctors choose to treat with T3 and T4 so they can both tweaked independent of each to find the best dose for the patient.

The other alternative is Natural Desiccated Thyroid which contains all the same known hormone as the thyroid gland and derived from pig thyroid dried and ground down into tablets referred to as grains and the original treatment for hypothyroidism and used successfully for over 100 years and still meant to be available through your doctor on a ' name patient only prescription ' though getting it prescribe easier said than done.

Many forum members refer to the research and work of Dr Izabella Wentz so you might like to read around Hashimoto's auto immune disease on thyroidpharmacist.com

[Fourwhitesheps in reply to pennyannie]

thank you I have an appointment with my doctor on the 28th but so far have not had much luck with my thyroid problems have never had antibodies tested before so was a bit of a shock at the result

[pennyannie in reply to Fourwhitesheps]

Yes of course it is a shock and something that should have been imparted to you many moons ago.

The NHS can't help with this auto immune disease so tend to ignore it, which doesn't really help you but you were prescribed the appropriate treatment at the time T4 - Levothyroxine apart of course for those anti-depressants if you dare say you don't feel any better !!!

An explanation of this AI disease could have helped you manage your own symptoms better as it does seem necessary to first check and heal the gut and then look at food intolerances to calm down auto immune response with likely triggers being gluten, dairy, and wheat.

It will be worth first getting screened for coeliac disease first and then look at food intolerances as already detailed and unless you have a doctor with an interest, or with the AI disease themselves it can be a bit of an uphill struggle and another reason why this patient to patient forum is so supportive and here to help and explain anything and everything.

[Fourwhitesheps in reply to pennyannie]

thank you yes was prescribed antidepressents and ended up in hospital with serotonin syndrome never again!

[pennyannie in reply to Fourwhitesheps]

I'm sorry to read this, I was being cynical though fell into the same trap but not as seriously.

Start reading up, knowledge is power and we do need to be our own best advocate.