Allergy to levothyroxine

[Rosie2m]

Hi, I’ve seen people saying they don’t get on with certain brands of levo, I’m wondering if this is what’s happening to me, As some of you are aware I’ve been suffering with mouth problems that started around 3weeks after starting Levothyroxine. I’ve stopped all supplements and still have the same issues. When I took my tablet this morning I felt like I was having an allergic reaction although I’m not sure if I was or it was more of a small panic attack, either way I must’ve fallen back to sleep and I’m still alive(luckily) does anyone have an ideas what this could be or have experienced the same or similar? Thanks x

[helvella Administrator Thyroid UK]

What tablets do you have?

[Rosie2m in reply to helvella]

I’ve stupidly thrown the box away but the strip says mercury pharma x

[Rosie2m in reply to Rosie2m]

Wockhardt is the brand on the box, just Googled xx

[helvella Administrator Thyroid UK in reply to Rosie2m]

Not to worry.

One approach often suggested is to take one of the ordinary over-the-counter anti-histamine tablets around an hour before the levothyroxine. If that diminishes or eliminates any reaction, it does suggest an allergic issue.

We currently have four formulations of levothyroxine tablet available in the UK.

Wockhardt - 25 only.

Acatavis (Accord) - also packaged as Almus and Northstar - 50 and 100.

Mercury Pharma (Advanz) - also packaged as Eltroxin - 25, 50 and 100.

Teva - 12.5, 25, 50, 75 and 100.

You could request a different make and see how it goes.

[Rosie2m in reply to helvella]

Oh really, the one I have was packaged in a wockhardt box but is 50mcg? I will give the antihistamine a go for a few days and see how I get on. I did actually take one before I went to bed last night as I was suffering from rashes which I get frequently and it technically should’ve still been working when I took my levo but I’ll give it a go for a few days and see if it makes any difference. Thankyou x

[helvella Administrator Thyroid UK in reply to Rosie2m]

This is a document with images of many UK (and some other) thyroid hormone packaging - for identification purposes:

dropbox.com/s/7tte490umnz6s...

Wockhardt still only have their 25 microgram product on their website:

wockhardt.co.uk/product-cat...

(Outside the UK, there might be other strengths of Wockhardt levothyroxine.)

If you had the box, I'd ask for a photo.

[Rosie2m in reply to helvella]

OMG, I’ve just found the box and you are totally right! No idea where I got the other brand from, I even said I had that brand 4weeks ago in a post... is it ok to blame the thyroid 🤣🤣 so sorry, I think I’m losing the plot lol! X

[helvella Administrator Thyroid UK in reply to Rosie2m]

Easily done. I have had brands of levothyroxine whirling round my brain for many years - which makes it easier. (Until something changes. )

[shaws Administrator in reply to Rosie2m]

You only need to take the anti-histamine once one hour before your dose of levo and that should be sufficient to let your body know that it doesn't like this particular hormone.

Only if you begin another levothyroxine and have similar symptoms, then you can try the antihistamine before your next dose.

[Rosie2m in reply to shaws]

Ah ok so just give it a go as a one off and see if it makes any difference? X

[SlowDragon Administrator]

How long have you been on starter dose? Must be around 6-8 weeks?

When we are ready for next dose increase can start to feel a bit odd

Are you getting first blood test soon?

[Rosie2m in reply to SlowDragon]

Yes I’m at 7weeks now and have noticed some of my previous symptoms that I thought had gone have started creeping back, and obviously this mouth thing is new (well I’ve had it a month now) I don’t know if u remember but my dr was saying that she won’t retest for 3months and that 50mcg is a sufficient dose given that my tsh was only 10.35. I’ve managed to get an appt with one of my other allocated drs so am going Thursday in the hope that I can make her listen to me x

[shaws Administrator in reply to Rosie2m]

If you've just begun levothyroxine it is usual to test after six weeks and have an increase after the test. I doubt your doctor is aware of how best to treat you.

On re-reading your post, I think I'd change the doctor. You've been diagnosed as your TSH was 10.5 but the aim is to get it to 1 or lower. To do this you need an increase every six weeks to relieve your clinical symptoms and the aim is a TSH of 1 or lower and Free T4 and Free T3 in the upper part of the ranges. I know the latter two are rarely tested but they are more informative than T4 and T3 alone.

We have to read and learn and become our own doctor so that we can relieve our clinical symptoms and feel much better. Many members on this forum have recovered their health by following advice from members and some even become their own doctors i.e. sourcing their own thyroid hormones and slowly increasing.

That's not to say all other thyroid hormones will do the trick, it is trial and error for the majority of us.

[Rosie2m in reply to shaws]

Hey shaws apparently my gp likes to follow certain parts of the guidelines and not others. She has started me on 50mcg and will not retest me for 3months(new nice guidelines I believe)... point blank refusal at my last appt telling me that 50mcg is a sufficient dose based on my tsh... and that I need to wait. However if she wants to follow the nice guidelines dose recommends 1.6mcg per kg and given that I weight around 85kg I don’t thing 50mcg is sufficient. Btw I could have all this info completely wrong, my brain is not functioning correctly lol. X

[shaws Administrator in reply to Rosie2m]

I really wish they'd go by the patient's clinical symptoms rather than a TSH result alone. That is what is supposed to happen, i.e. take sufficient dose of thyroid hormones, which is gradually increased to resolve clinical symptoms.

TSH is not a thyroid hormone - it is from the pituitary gland which rises when thyroid gland is struggling. The aim is TSH of 1 or lower.

So many doctors - especially if they don't have a problem with their thyroid gland themselves - seem to believe that TSH results give more information than the patients' clinical symptoms. Before blood tests were introduced along with levothyroxine, we were all diagnosed upon our clinical symptoms and given NDT (natural dessicated thyroid hormones), gradually increased until patient was symptom-free.

thyroiduk.org.uk/tuk/thyroi...

The aim is a TSH of 1 or lower and a Free T4 and Free T3 in the upper part of the ranges. The frees are rarely tested in the UK.

[Rosie2m in reply to shaws]

I totally agree, my friend who is now hypo after having iodine treatment for hyper has had nothing but problems with the same gp I have, even when she got pregnant the dr refused her an increase of levo despite the endo saying there’s an increase with pregnancy and her levels raised from under 2 to just under 5 and she was presenting with symptoms, but because she was ‘in range’ our dr refused until the endo sent a very blunt email to her only then did she give her the increase 4weeks after the initial request. Patient care seems to be the last thing on a lot of these drs minds and it begs the question how some even managed to qualify tbh. X

[SlowDragon Administrator in reply to Rosie2m]

Definitely see a different GP

As you had high antibodies your GP could and should have started Levothyroxine months ago

Print these three pages out and highlight relevant sections. Take them with you to produce.....if necessary

Have you had vitamins tested yet? . If not ask that they are tested at this blood test

NICE guidelines

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

nhs.uk/medicines/levothyrox...

Although starting doses are usually the same, the dose of levothyroxine you end up taking, or how quickly the dose is increased, depends on your symptoms, hormone levels, age and whether you have any other health problems.

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

New NICE guidelines

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Use this as argument for dose increase

When dose is increased to 75mcg - either use 50mcg plus a half 50mcg tablet, or get prescribed extra 25mcg tablets

Teva is only brand that makes 75mcg tablet.

Wearing a Fitbit to give printable weekly summaries of you activity levels and resting heart rate can be extremely helpful in arguing for dose increase too

[Rosie2m in reply to SlowDragon]

Thankyou, I had planned to get printouts of these to take (just in case) and also have made a note of the vitamins you said to get tested. I have paid for a private kit from thriva which arrived just before the weekend but I am waiting to see how appt Thursday goes before I use it, thought being if she listens to me I can use it at a later date for peace of mind.

According to the receptionist the dr that I am booked in with is very nice but whether that means she has better patient care who knows! X