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[Battlestar56]

Yes i have been diagonsed with hashmotos and been taking levo for two years doctor refused an increase but found a consultant who would from 50 to 75 a day am subclincal yet have very bad symptoms brain fog constant am pretty much not able to function properly at all for a long time. The blood was taken early in morning i take selenium b12 vitamin d3 no biotin. I cannot believe the way i have been treated over this illness the first endo i spoke to was useless the second offered me a small increased in levo thats all im gluten free and am better than i was but its still misery it seems to me the medical people have just thrown me on the scrapheap .

[Hypopotamus]

Welcome to the world of chronic illness, a condition that places us at the bottom of the NHS priority list.

So, the positive thing is that you know that you are on your own, and will have to try and help yourself as much as you can. But not on your own of course because you have resources like this one.

What I have found helps me is:

Vitamin B12 injections (I do my own). Large amounts of oral B12 had no effect on me.

Natural thyroid hormone rather than levo that did nothing for me.

Diet (we are all different so experiment). But Water Kefir and sauerkraut made a massive improvement for me.

The right balance of rest and exercise with as much sunshine as possible.

YouTube is a valuable resource for looking into all this, and I wish you luck as I know exactly what your situation is like.

[SlowDragon Administrator]

i think you you meant to add this as a reply to your first post

healthunlocked.com/thyroidu...

How long since dose was increased to 75mcg levothyroxine

Which brand of levothyroxine are you currently

Teva is only brand that makes 75mcg tablets and Teva upsets many people

ESSENTIAL To retest thyroid 6-8 weeks after any dose change or brand change in levothyroxine

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking

Essential to test folate, ferritin, B12 at least once year and vitamin D twice year when supplementing

75mcg is only one step up from starter dose

Likely to need further increases in levothyroxine over coming months

Approx how much do you weigh in kilo?

[Battlestar56 in reply to SlowDragon]

Hi i take B 12 vit D and selenium with A and E . Its incredible struggle day to day with this illness takes a lot outta me time consuming dealing with the differnt aspects never have time for family anfd friends and yes i agree its a lonely fight especially getting binned off by doctors and useless consultants. I have actually lost weight im just over 10 stone 6 ft im guessing it could be the levo i have been doing a lot of walking which helps but probs too much constant brain fog feels or restless hyper feeling no inbetween idisappointed my t3 isnt low i thought t3 could have been a possible treatment cross that one of the list .

[SlowDragon Administrator in reply to Battlestar56]

So

How long since dose increase to 75mcg?

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

ESSENTIAL to test folate, ferritin and B12 once a year

Test vitamin D twice year when supplementing

Please add most recent results and ranges

Rather than just taking B12, recommended to be taking a GOOD quality Vitamin B complex

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and separate B12

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

How other member saw how effective improving low B vitamins has been

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Battlestar56]

Are you absolutely strictly gluten free…..reading all labels and avoiding cross contamination

Have you seen improvements cutting gluten out

If gluten intolerant you may eventually need addition of T3

ALWAYS test thyroid levels early morning, before 9am and last dose levothyroxine 24 hours before test

Guidelines on dose levothyroxine by weight suggests you are likely to need 100mcg levothyroxine…

10 stone = 63.5 kilo

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Battlestar56 in reply to SlowDragon]

M y GP refused to increase my levo when i asked him it was a consultant who suggested i increase which has helped . I understand T3 is costly and hard to get? Also looking at my private blood test for free ft3 it seems normal therefore im assuming i wouldnt be a candidate for T3 at this stage ? My free T3 is higher in comparison to my T4 its very confusing . d 3 tablet form 25ug . Yes i am total gluten free it seems to have made an improvement nothing dramatic though i defo not going back to gluten while i feel this lousy.

[SlowDragon Administrator in reply to Battlestar56]

Come back with new post once you get vitamin results tested via Medichecks or Blue horizon

Recommend including testing testosterone too

Vitamin D 25ug is only 1000iu

Highly likely that’s an inadequate dose.

Test vitamin D twice year when supplementing

Once a year with rest of vitamins via Medichecks or Blue horizon

Once a year via NHS private test service

vitamindtest.org.uk

Likely to need higher dose vitamin D in winter than summer

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

Any vitamin D you swallow must be four hours away from levothyroxine

When taking vitamin D we also need magnesium and vitamin K2 mk7

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...

Likely to need 2 or 3 sprays per day, perhaps more if needing to increase your vitamin D levels

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

Magnesium

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

Gluten free diet is also low in magnesium

Levothyroxine

How long since dose increase to 75mcg. Can take several months until ready for next dose increase

Retest again in another 6-8 weeks after getting all vitamin levels tested and optimal

Optimal vitamin levels are essential for levothyroxine to work well

Do you normally take levothyroxine waking or bedtime?

Which brand of levothyroxine are you currently taking

Teva is only brand that makes 75mcg tablets

Teva brand upsets many many people

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)

Teva, Glenmark or Aristo (100mcg only) are the only lactose free tablets

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.

New guidelines for GP 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. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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...

Or you might find it better to split the dose levothyroxine, taking half dose waking and half dose at bedtime

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

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

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

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

As a bloke, have you had testosterone levels tested ?

Low testosterone and being hypothyroid often linked

thyroidpharmacist.com/artic...

Similarly high cholesterol levels would indicate if your still under medicated

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

[SlowDragon Administrator]

How much vitamin D are you currently taking

Is it mouth spray, tablets or gel ?

Are you also taking magnesium and vitamin K2 mk7

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...

[Battlestar56 in reply to SlowDragon]

Thanks once again you have given me some useful resources i will try these see how i get on.