Advice needed please: I have had my vitamin... - Thyroid UK

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Advice needed please

Vorney profile image
15 Replies

I have had my vitamin levels tested by my Dr and tested my full thyroid panel through monitor my health, following on from advice provided here.

Still feel I am losing the plot as symptoms continuing are:

Swollen , scalloped white tongue

Dry, ridged peeling nails

Incredibly dry eyes requiring hourly eye drops after seeing my optician which are causing blurred vision

Swollen fingers

Dry mouth

Dry skin

Brain fog

Aching joints

My test results are all normal according to my Dr, has referred me to a specialist but apparently they are refusing to see people?! Suggested testosterone to take alongside my HRT, then incorrectly informed me I could buy it from the chemist 🤦‍♀️have another appointment this week to discuss.

Here are my results, please can I have advice on supplements as fed up of feeling rubbish:

Magnesium 0.77 mmol/L

Serum TSH 1.58 miu/L

Vit D 61 nmol/L

B12 78 pmol/L

Serum ferritin 43 ug/L

Serum folate 3.9 ug/L

Private test last monday:

TSH 1.23mu/L

Thyroxine FT4 16.9 pmol/L

Triodothyronine FT3 4.2 pmol/L

Thankyou in advance

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Vorney profile image
Vorney
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15 Replies
TiggerMe profile image
TiggerMe

If you could add the ranges as they vary

They all look low which won't help make use of levo and you don't look to be converting very well... what do you weigh and what dose are you on?

Obviously still very symptomatic due to low fT3

Vorney profile image
Vorney in reply to TiggerMe

Thankyou, here are the ranges

Mag 0.7-1

Vit d 50.1-220

B12 51-128

Serum ferritin 22-204

Serum folate 3.1-20.5

Tsh 0.27-4.2 mU/L

Ft4 12-22 pmol/L

Ft3 3.1-6.8 pmol/L

I weigh approximately 14 stone (heaviest I have ever been) I eat clean, do intermittent fasting, and nothing I do enables me to lose weight) and am on a dose of 100 micrograms of levo since November, previously on 50

TiggerMe profile image
TiggerMe in reply to Vorney

Ok... so Vit D needs supplementing to get it above 100 buy one with K2 for bone health grassrootshealth.net/projec...

Folate is very low so a good B complex like Thorne Basic B or Igennus Super B will sort this (and top up your B12 which isn't too bad)

Ferritin is on the low side so adding in more leafy greens and chicken liver pate

Magnesium could do with a boost, there are different forms so often a complex is a good option... soaking in an epsom salts bath is a joy 🤗healthunlocked.com/thyroidu...

Free T4 (fT4) 16.9 pmol/L (12 - 22) 49.0%

Free T3 (fT3) 4.2 pmol/L (3.1 - 6.8) 29.7%

T4:T3 Ratio 4.024 

As a rough guide your weight in kg x 1.6 suggests a dose of around 140mcg so I'd certainly be asking for the next increase of 25mcg, I wouldn't beat yourself up about losing weight whilst under replaced as it's counter productive

Vorney profile image
Vorney in reply to TiggerMe

Thankyou so much, I feel like I am banging my head against a brick wall speaking to my dr x

TiggerMe profile image
TiggerMe in reply to Vorney

Don't we all!!🙄.... thankfully we have this brilliant group 😅 and you can help retrain your GP 😁

SlowDragon profile image
SlowDragonAdministrator

Request “trial increase “ to 125mcg daily

Which brand of levothyroxine are you currently taking

Do you always get same brand

Work on improving vitamin D, folate and ferritin

Increase iron rich foods in your diet

exactly what vitamin supplements are you currently taking

Vorney profile image
Vorney in reply to SlowDragon

Ok, thankyou

Brand name is Teva.

Not taking anything as stopped the will powders supplements following on from advice here.

Today ordered magnesium, biotin, vit d with k2 and thorne basic b

TiggerMe profile image
TiggerMe in reply to Vorney

400mcg of biotin in the basic b 1333% DV

SlowDragon profile image
SlowDragonAdministrator in reply to Vorney

you don’t need separate biotin as well as vitamin B complex

Vitamin B complex has high dose biotin in it

Do you always get Teva

Are you lactose intolerant

Many people find Levothyroxine brands are not interchangeable.

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

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

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

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

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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.

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

Vorney profile image
Vorney in reply to SlowDragon

Thankyou. I am not lactose intolerant, have a telephone appointment with the dr on Thursday as dr had also suggested testosterone to take alongside hrt to see if that helped. Incorrectly said I could purchase it!!

So ask for increase in levo by 25 and to have a different brand name and start vitamins excluding biotin when they arrive 🤞

SlowDragon profile image
SlowDragonAdministrator in reply to Vorney

Only change one thing at a time or add one supplement at a time

Then wait at least 2 weeks to assess before another change

Vorney profile image
Vorney in reply to SlowDragon

Had my appointment, I could cry?! Dr would not listen, spoke over me. Reeled off all my symptoms, to be told will you are perimenopausal???? And there can be a crossover in symptoms.

Tried to say but I am on HRT, levo and STILL have all these symptoms which are affecting my day to day life. Then she said endochronology have come back and said they don’t need to see me as my levels are normal.

I feel completely defeated, that’s the 3rd doctor in just a few weeks who has refused to listen

SlowDragon profile image
SlowDragonAdministrator in reply to Vorney

So you need to go over GP head to see thyroid specialist

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

meanwhile work on improving low vitamin levels

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts you have Hashimoto’s

So managed to speak to my dr, they had tested for antibodies which in his words “were through the roof”, he said no wonder I have been feeling so rubbish with so many symptoms (my voice has become hoarse the last week too)so, definitely Hashimotos.

(Please add that to your profile)

Have you had coeliac disease blood test done yet

Are you now on 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.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE guidelines

nice.org.uk/guidance/ng20/c...

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

which brand of levothyroxine are you currently taking

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...

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

Guidelines on dose by weight suggests you need dose increase

Can you see GP who increased your Levo last time

14 stone = 89kilo

89kg x 1.6mcg Levo = 140mcg as likely daily dose levothyroxine

Push hard for 25mcg dose increase

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