Levothyroxine allergy?: How can I find out if I... - Thyroid UK

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Levothyroxine allergy?

Lynsie1 profile image
17 Replies

How can I find out if I could be allergic to levothyroxine. If so, what is the alternative?

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Lynsie1
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17 Replies
fuchsia-pink profile image
fuchsia-pink

I'd first rule out that the problem is with the fillers. Not all levo is the same - some brands (eg Teva and Aristo) are lactose-free; others have different ingredients. I think there is a full list on the main Thyroid UK site of all the constituent ingredients of each brand

So start with one brand and if this doesn't suit, "yellow-card" it and try another.

Once you've tried all the brands available in the UK - check out helvella 's list of brands and tablet doses in each - then see if you can get the much more expensive liquid levo.

Lynsie1 profile image
Lynsie1 in reply to fuchsia-pink

Thank you fuchsia-pink, I have been trying different brands, as we now know I am lactose intolerant, however, I have been refused liquid by the GP on the basis of cost. I will check the site you refer to x

SlowDragon profile image
SlowDragonAdministrator

GP can not refuse trial of liquid levothyroxine

New Government guidelines

healthunlocked.com/thyroidu...

These symptoms experienced by a minority of patients are acknowledged in UK professional guidelines. These guidelines note that although generic prescribing of levothyroxine is appropriate for the vast majority of patients, in rare cases a patient may require a specific levothyroxine brand to be prescribed.[footnote 7] In some patients, better control of thyroid function may be achieved with oral solution forms of levothyroxine than with tablets.[footnote 8] [footnote 9] [footnote 10]

Lynsie1 profile image
Lynsie1 in reply to SlowDragon

Excellent info SlowDragon, thank you!

SlowDragon profile image
SlowDragonAdministrator

Presumably you have autoimmune thyroid disease also called Hashimoto’s with lactose intolerance

Have you had coeliac blood test done

Lactose intolerance often result of gluten intolerance

Both lactose and gluten intolerance extremely common with Hashimoto’s

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies or test privately

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Lynsie1 profile image
Lynsie1 in reply to SlowDragon

I have not been diagnosed with Hashimoto disease

SlowDragon profile image
SlowDragonAdministrator in reply to Lynsie1

But highly likely your hypothyroidism is autoimmune (aka hashimoto’s)

About 90% of primary hypothyroidism is autoimmune.

Look through old thyroid tests see if ever have had TPO antibodies or Thyroglobulin antibodies tested

Or ultrasound scan of thyroid

Lynsie1 profile image
Lynsie1 in reply to SlowDragon

Never rec’d thyroid test info previously. Obtained results for the first time since finding this amazing website. On checking the result I did receive, there is no TPO mentioned.

I am a surviving NHL stage 4b patient currently in remission and I do believe previous thyroid mismanagement contributed to suffering that cancer.

I did request vitD test and that is 92nmol/I - no need to improve on that form the moment.

SlowDragon profile image
SlowDragonAdministrator in reply to Lynsie1

I just removed image as it has your name and DOB

Feel free to resubmit with that blanked out

So perhaps more likely hypothyroid as result of NHL

nejm.org/doi/full/10.1056/N...

But would be worth ruling Hashimoto’s in or out by testing thyroid antibodies

Lynsie1 profile image
Lynsie1 in reply to SlowDragon

OK, thank you!

SlowDragon profile image
SlowDragonAdministrator in reply to Lynsie1

Especially as you are lactose intolerant….suggests Hashimoto’s

shaws profile image
shawsAdministrator in reply to Lynsie1

Many GPs are unaware of Hashimoto's as a hypothyroid condition. They rarely know what TSH means.

SlowDragon profile image
SlowDragonAdministrator

Lactose intolerance as result of gluten intolerance

coeliac.org.uk/healthcare-p...

If you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of primary hypothyroidism is autoimmune thyroid disease

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

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 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

healthcheckshop.co.uk/store...?

Assuming coeliac 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...

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.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

asidist profile image
asidist

what kinds of allergy symptoms do you have? compounded levothyroxine is another option to figure out if your allergy/reaction is truly to the levothyroxine. the compounding pharmacy can make levo capsules where the only other ingredients are typically a cellulose filler and a clear gelatin capsule (both being ingredients that are very likely in other supplements or medicines you take and already know for sure you have no issue with - you can ask the pharmacy what they use and compare, or just ask them to make you a few pills without levo for comparison) so if you still react to the compounded levothyroxine pills you know for sure it’s the levo itself that is the issue. best of luck.

helvella profile image
helvellaAdministratorThyroid UK in reply to asidist

Not an easy option in the UK. I think it would run out even more expensive than levothyroxine oral solutions.

asidist profile image
asidist in reply to helvella

sorry to hear. it was several times cheaper and much quicker for me in the U.S. to get from a compounding pharmacy than to get an oral (liquid) solution.

Lynsie1 profile image
Lynsie1

Thank you asidist, I will try my pharmacist if he can help.

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