Updated results - not sure what to do next? - Thyroid UK

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Updated results - not sure what to do next?

marbo profile image
18 Replies

Hi everyone- I am on 100mg of Levo and these are my latest results;

TSH 0.14 mIU/L (Range: 0.27 - 4.2) (previously 2.58)

Free T3 5.2 pmol/L (Range: 3.1 - 6.8) (previously 3.9)

Free Thyroxine X 16.2 pmol/l (Range: 12 - 22) (previously 11.3nmol/l)

My results before starting Levo were;

TSH 2.58 mIU/L (Range: 0.27 - 4.2)

Free T3 3.9 pmol/L (Range: 3.1 - 6.8)

Free Thyroxine X 11.3 pmol/l (Range: 12 - 22)

The t4 is within range but possibly not optimal? TSH seems very low but could this be normal if the pituitary is dysfunctional?

Any help of suggestions would be greatly appreciated. I'm not sure if I should push for a higher Levo dose or lower?

thanks for your help :)

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SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts, couldn’t see any recent results for vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Please add latest vitamin results

How do you feel?

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Ft4 is only 42% through range

Ft3 is 56% through range

Which brand of levothyroxine are you currently taking

Yes you have room for dose increase in levothyroxine, but GP or endocrinologist may only look at low TSH and be reluctant or might want to reduce dose.

How much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo per day (can be helpful to persuade for next increase) Common to need higher than this

marbo profile image
marbo in reply toSlowDragon

Thanks for the quick response!Unfortunately I did not get vitamins tested - but my latest results from about 3 months ago and doses were;

Vitamin D - 138.5 nmol/L (range 50.0 - 250.0) Taking 4000iu per day

Serum folate > 24.0 ug/L (range 3.0 - 20.0) Was taking Folic Acid 200mcg as part of multi vitamin

Ferritin 95 ug/L (range 15 - 200) Taking 14mg iron supplement

B12 869 ng/L (range145 - 910) Taking 2.5mcg supplement

I can try and get these tested again. What affects would high or low amount of these vitamins have on the T4 treatment?

I actually don't really feel any better than before starting 100mg Levo. Still very tired and sluggish with low energy.

Yes the test was done in the morning before food or drink and had not had levo for 24hrs

The brand is Aristo and I weigh 76kg so in theory should have about 120mg of Levo.

Yes i did think the fact that TSH is very low (below range) - and T4 is just within range might make it difficult to get dose increase. But I do still feel just as bad and T4 is only just in range.

thanks for your help once again :)

SlowDragon profile image
SlowDragonAdministrator in reply tomarbo

Are you lactose intolerant that you are taking lactose free levothyroxine?

Have you ever had different brand levothyroxine

Aristo only make 100mcg tablets, so I assume you have had different brands

marbo profile image
marbo in reply toSlowDragon

I am not lactose intolerant - these are the ones the pharmacy had. I started on Mercury Pharma 50mg dose.

SlowDragon profile image
SlowDragonAdministrator in reply tomarbo

So you might be better back on Mercury Pharma brand

Suggest as first step you get Mercury Pharma brand 100mcg at next prescription and retest in 6-8 weeks

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

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...

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.

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

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

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.

healthunlocked.com/thyroidu...

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...

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)

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

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

marbo profile image
marbo in reply toSlowDragon

Hi - actually I have just looked at some food intolerance blood tests i had done - and I am intolerant of milk, cheese and egg whites. Also it says I am allergic to milk and soy. Not sure if this means I am lactose intolerant though? It also says I am intolerant of wheat, rye, oats, soy and maize.

SlowDragon profile image
SlowDragonAdministrator in reply tomarbo

So you need to be on strictly dairy free diet and lactose free levothyroxine as well

Teva or Aristo brand tablets are the only lactose free levothyroxine tablets available

Aristo only available in 100mcg tablets

Alternatively liquid levothyroxine is lactose free

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.

And gluten free diet as well - no wheat, barley or rye

Oats or maize ….you might be able to trial adding back in eventually

Both lactose intolerance and gluten intolerance are extremely common with autoimmune thyroid disease

Anyone on levothyroxine needs to avoid soy

SlowDragon profile image
SlowDragonAdministrator in reply tomarbo

So as your lactose intolerant, you need Aristo or Teva brand levothyroxine

Or via endocrinologist you could trial liquid levothyroxine (it’s relatively expensive so not usually initiated via GP)

Have you had coeliac blood test

Poor gut function with Hashimoto’s 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

Before considering trial on gluten free diet ideally get coeliac blood test done FIRST just to rule it out

lloydspharmacy.com/products...

If you test positive for coeliac, will need to remain on gluten rich diet until endoscopy (officially 6 weeks wait)

If result is negative can consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.

If no obvious improvement, reintroduce gluten see if symptoms get worse.

chriskresser.com/the-gluten...

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

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

marbo profile image
marbo in reply toSlowDragon

I did do a Celiac test in 2020 and it came back negative. I also did the autoimmune testing and it came back as;Autoimmunity

Thyroglobulin Antibodies 13.2 IU/mL (Range: 0 - 115) OPTIMAL <2

Thyroid Peroxidase Antibodies 13.1 IU/mL (Range: 0 - 34) OPTIMAL <2

Is it possible to have Hashimoto’s and also hypopituitarism?

SlowDragon profile image
SlowDragonAdministrator in reply tomarbo

Not sure

You can have low adrenal levels because of longtime hypothyroid/Hashimoto’s

Have you had ultrasound scan of thyroid?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Wired123 profile image
Wired123 in reply tomarbo

Lots of interesting allergy results, I might try getting them done too. Which provider do you use to get them done?

marbo profile image
marbo in reply toWired123

Hi - I used globaltestinglab.com. and went for 'Choice 70'. There are also much cheaper hair sample tests available which cost as little as £15 but I'm not sure how accurate they are.

SlowDragon profile image
SlowDragonAdministrator

Have you had ultrasound scan of thyroid yet

Or MRI of pituitary.

Looking at previous posts you say testosterone low too

Next step is likely to be adding small dose T3 alongside levothyroxine

marbo profile image
marbo in reply toSlowDragon

Hi - I am still waiting for the results of the mri scan and have not had the thyroid scan. I have been given testosterone gel and it has increased testosterone to just within range. Really not sure what to do next as I presumed the Levothyroxine would make me start to feel better but i feel pretty bad still. It looks like my pituitary is producing hardly any TSH now and the T4 is all coming from the Levo. Does it matter if the TSH is reduced to zero which could happen if I raise to 125mg? thanks

SlowDragon profile image
SlowDragonAdministrator in reply tomarbo

Many people when adequately treated will have low TSH

Most important results are always Ft3 and Ft4

But many GP’s will freak out at low TSH and want to reduce dose levothyroxine if TSH is under range

marbo profile image
marbo in reply toSlowDragon

Hi - so if my TSH goes even lower that would be ok as long as the T4 is ok? Would low TSH in itself lead to symptoms of tiredness and aches and pains?Also I thought the body transformed T4 into T3 so why do people take additional t3 and not just more T4?

What T4 and T3 levels should i aim for?

thanks for your help :)

SlowDragon profile image
SlowDragonAdministrator in reply tomarbo

Common on levothyroxine to have sluggish or poorly responsive TSH, especially with Hashimoto’s and/or low adrenal levels

The Hypothalamic, pituitary and adrenal axis is disrupted

Many thyroid patients have poor conversion of Ft4 to Ft3…..low vitamins, poor gut function, gluten and/or dairy intolerance, Dio2 gene variation etc etc

Naturally a correctly working thyroid would make 80% Ft4 and 20% Ft3 and it goes direct into blood stream.

Conversion is possibly reduced with low TSH…..but it’s chicken and egg….if you take low dose levothyroxine to increase TSH, thyroid hormones are inadequate. If you take high enough dose levothyroxine, TSH is reduced

Taking tablets that are absorbed in gut, in a single large daily dose is not comparable to your thyroid making thyroid hormones

Many people simply can’t manage on just levothyroxine (Ft4)

Aiming for Ft4 and Ft3 at least 50-60% through range. Often need Ft4 higher at 80-90% through range to get Ft3 even at 50% through range

Wired123 profile image
Wired123 in reply tomarbo

Warning on testosterone gel - it can damage fertility so be mindful if that’s relevant to you.

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