Advice appreciated...im confused : Any advice on... - Thyroid UK

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Advice appreciated...im confused

Kimbo86 profile image
28 Replies

Any advice on my recent bloods? I was on 62.5mg levo and then Increased in April to 75mg...was hoping that my TSH would get closer to 1 but it seems to have increased. Do I have a conversion issue? My ferritin is 25 and tablets aren't working so I need to speak to GP as I know better iron will help conversion. Do I need to decrease my meds and/or add T3? Only thing IV done differently is fasting...perhaps this creating too much stress on my thyroid

update I didn't realise I could only post one photo so results as follows

TSH 3.9 April 2.7

T3 4.2 April 4.3

T4 14.6 April 13.8

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Kimbo86 profile image
Kimbo86
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greygoose profile image
greygoose

Hi Kimbo86, welcome to the forum. :)

It is impossible to tell how well you convert without seeing an FT3 result tested at the same time as your FT4. A TSH will tell you nothing about your conversion.

So, what is your TSH? And what was it before? Do you always do your blood draws at the same time of day?

Your ferritin is low, but do you take vit C with your iron tablets? That will help absorption.

How are your vit D, vit B12 and folate? If your ferretin is low, they will likely be low, too.

Kimbo86 profile image
Kimbo86 in reply togreygoose

Hi thank you sorry for confusion i have added now apologies I didn't see it would only post one photo oddly. Have added results. My B12 and folate are optimal ..vit D and ferretin were very low. Ferretin is still 25 and yes I do take vit c but there must be an absorption issue. Haven't checked my vit D since it was checked privately but I imagine possible same absorption issue despite taking supplements etc

SlowDragon profile image
SlowDragonAdministrator in reply toKimbo86

Haven't checked my vit D since it was checked privately but I imagine possible same absorption issue despite taking supplements

With vitamin D at 47nmol GP should have prescribed 1600iu daily for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

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...

How much vitamin D have you been taking

Vitamin D tablets should be with high fat meal to improve absorption and at least four hours away for levothyroxine

Test and see where your level is now

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

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

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...

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...

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...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Kimbo86 profile image
Kimbo86 in reply toSlowDragon

Thank you. I really appreciate your advice and time helping me

SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

Was last test done early morning and last dose levothyroxine 24 hours before test

What’s you TSH result?

Ferritin is obviously still far too low

Have you had full iron panel test for anaemia via GP

Has GP tested vitamin D, folate and B12 levels too

And you should have had thyroid antibodies tested for autoimmune thyroid disease also called Hashimoto’s…..when first diagnosed as hypothyroid

On levothyroxine we need OPTIMAL vitamin levels

Exactly what vitamin supplements are you currently taking

Kimbo86 profile image
Kimbo86 in reply toSlowDragon

Hi thank you. I have added results in post now..confusion around the photos posting. My test was mid morning whereas previous tests have been early morning but I have always taken my levo before test for consistency so last dose taken a few hours before. I haven't had a full iron panel done...I had a private thyroid blood test which showed insufficient vit D and ferretin deficiency. I was given 400mg iron for a couple months and then 200mg for couple months but it's had zero impact. The GPs just aren't interested in testing for these things..it's a challenge just arguing for TSH T3 and T4. On my private test it did show raised antibodies think it was 219 so not that high but out of range. I have asked but the GP won't test for that...I try and follow a lifestyle helpful to someone with hashimotos and hypo even without a diagnosis of H. I'm currently taking mega magnesium selenium zinc vit D and K2, omega 3 probiotics vit c and vit b.

SlowDragon profile image
SlowDragonAdministrator in reply toKimbo86

So high thyroid antibodies confirms autoimmune thyroid disease (hashimoto’s)

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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

ALWAYS test thyroid levels with last dose levothyroxine 24 hours before test ….otherwise you get false high Ft4 result and then GP reluctant to increase dose levothyroxine

What were actual vitamin D, folate and B12 results on your private tests

How much vitamin D are you now taking

How long since dose was increased to 75mcg daily

Which brand levothyroxine are you currently taking

Suggest you retest thyroid and vitamin levels privately with correct timing

Kimbo86 profile image
Kimbo86 in reply toSlowDragon

Private Results taken in march 2023

B12 149Vitamin d 47

Folate 13.51

Ferritin 27.8 (this has now decreased to 25)

Thyroglobulin 225

Perioxdase 216

TSH 4.09

T3 3.87

Free thyroxine (assume this is T4?) 18.7

Currently taking 2000iu vitamin D

I am given diff brands each time..currently Teva.

My dose was increased in April to 75mg

I will test privately again the GPs don't give any advice..IV never had an issue getting an increase in my meds.

SlowDragon profile image
SlowDragonAdministrator in reply toKimbo86

So request 25mcg dose increase in levothyroxine to 100mcg ……even if you initially only increase alternate day

Teva brand of levothyroxine can be an issue for many people

Are you lactose intolerant or on dairy free diet, if yes, Teva might suit you better

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...

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

List of different brands available in U.K.

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

SlowDragon profile image
SlowDragonAdministrator in reply toKimbo86

Are you taking a separate B12 and/or separate Vitamin B complex

If taking vitamin B complex (contains biotin) remember to stop taking this 5-7 days before test

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 folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

Kimbo86 profile image
Kimbo86 in reply toSlowDragon

Yes taking separate. I have B12 injections. I will remember this advice thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toKimbo86

so do you have Pernicious Anaemia or just low B12

How long have you been on B12 injections

Kimbo86 profile image
Kimbo86 in reply toSlowDragon

The B12 Injections I had through my aesthetics clinic. I was meant to have one and then next visit vitamin D and then next visit vitamin C .but last year I ended up having two B12 because they didn't have the others in so think that's why I'm fully topped up B12 wise. The gp has never tested any of my vitamins and used to only do TSH. I was diagnosed just after lockdown and pretty much been left to figure it out. I'm going to phone them now and request a full iron panel as my ferritin is not moving at all.

SlowDragon profile image
SlowDragonAdministrator

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 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

Hashimoto’s and leaky gut often occur together

SlowDragon profile image
SlowDragonAdministrator

Low ferritin is extremely common with Hashimoto’s

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

tattybogle profile image
tattybogle

Hi Kimbo86 , so if you increased to 75mcg in April and TSH is now higher at 3.9 then that shows you need another dose increase to either 87.5mcg , or more likely 100mcg Levo . (depending on fT4 level)

the only reason you would not increase levo and look at adding T3 , is if fT4 is already at, or very close to the top of the ref. range.

We can't tell how high your fT4 is until you give us the lab range that came with those fT4 results. eg [12-22] or [7.9-14] or other ?

Also you need to bear in mind that by testing just a few hours after taking last dose, you will be measuring the highest 'peak' of fT4 in the blood which only last a few hours and goes up and down again quite rapidly , you really want to be testing fT4 24 hrs after last dose and doing that consistently for a proper comparison of what the stable level of fT4 is for the dose you are taking .

Kimbo86 profile image
Kimbo86 in reply totattybogle

Thank you so much I have updated the results in the original post. Apologies I didn't know it hadn't posted all three pictures. My T4 is now outside normal range .

tattybogle profile image
tattybogle in reply toKimbo86

so the lab range for your fT4 is [7 ish - 14] ?

Kimbo86 profile image
Kimbo86 in reply totattybogle

Yes it is

SlowDragon profile image
SlowDragonAdministrator in reply toKimbo86

My T4 is now outside normal range .

But it’s a false high result because you tested soon after taking levothyroxine

Kimbo86 profile image
Kimbo86 in reply toSlowDragon

I do understand that. IV booked a telephone chat tomorrow and next bloods I will NOT take my meds and start from there. previous results do show my T4 has been close to the top of the range around 13 so could my issue be conversion?

SlowDragon profile image
SlowDragonAdministrator in reply toKimbo86

until iron/ferritin you can’t say

Good vitamin levels improves conversion

Gluten Free and Dairy Free can similarly significantly improve symptoms and absorption

tattybogle profile image
tattybogle in reply toKimbo86

previous results do show my T4 has been close to the top of the range around 13 so could my issue be conversion?

if previous blood were not done 24 hrs after last dose either , then same issue applies to those fT4 results too.. looking at false high

tattybogle profile image
tattybogle in reply toKimbo86

ah .... that's the problem with testing a few hours after levo... we know your fT4 will be a bit lower than this 'really' (when avoiding the 'peak') .. but it's not easy to estimate how much lower.

So you may/ or may not have room for a bit more levo , but GP is unlikely to prescribe it when they are looking at an fT4 that is over range ~ in fact they may want you to reduce your dose .

in an ideal world they would realise your TSH of 3.9 is still too high to be optimal , and would then refer you to endocrinology who may offer you a trial of combination therapy (a bit less levo plus a bit of T3) .. but it's not an ideal world so GP's are much more likely to just reduce your levo and leave you undemerdicated and never mention anthing about a possible trial of T3.

This illustration below shows the % change that happens to fT4 levels in the hours following dose:.. if you test between aprox 1hr - 6hr your GP gets an unrealistic impression of the levels of fT4 you have for most of the day.

Kimbo86 profile image
Kimbo86 in reply totattybogle

I can't see the illustration but absolutely understand the points being made..thanks for bearing with me..it's such a lot to get your head around..and I think I'm there..it feels doubly hard when your basically self managing it! I will ask about an endo referral but it's highly unlikely however I know you can buy and self Medicate T3 so maybe a possible route..I absolutely know that they won't give me a combination of T4 and T3.

tattybogle profile image
tattybogle in reply toKimbo86

hopefully it's now appeared in reply below .. there may be some gremlins in the works today , i couldn't add it where it was supposed to go.

Kimbo86 profile image
Kimbo86 in reply totattybogle

It has thank you

tattybogle profile image
tattybogle

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