Levothyroxine sensitivity

[melon_one]

Hello, I’m new to the group and would love to get your advice!

I was treated for an overactive thyroid in 2013 with radio iodine and for 4 1/2 years my Endo consultant told me my thyroid was ‘surprisingly’ normal. Until recently. My last TFT test on9th Feb showed my TSH had gone up to 7.6.

My GP was concerned that with all my other conditions (Asthma, Pullmonary Aspergillous, Adrenal failure and Vit D and B12 deficiencies) that I needed to go on thyroxine straight away. My GP contact the Endo Team and they started me on 50mg Levothyroxine (Mercury Pharma brand).

At the same time I was given co-amoxiclav antibiotics for a chest infection. This is an antibiotic I’ve had before.

3 days into taking Levothyroxine and co-amoxiclav I started with an allergic reaction. An itchy burning rash on my face. My GP told my to stop Thyroxine and the reaction continued getting worse after an antibiotic dose. So I ended up stopping antibiotics as well. Thankfully the reaction calmed after this. So looks like I’ve got an allergy sensitivity to penicillin.

2 days after stopping both thyroxine and co-amoxiclav my GP started me on a different brand of thyroxine just in case the Thyroxine was a factor. So I started on Levothyroxine sodium 50mg (Actavis brand).

After taking 2 doses I woke up yesterday feeling very unwell, headaches, nausea, feeling physically weak and unable to eat much. I still took my Thyroxine. My symptoms didn’t improve throughout the day in fact seemed to get worse. It was like a severe hangover without the fun of drinking (I haven’t drank alcohol for weeks as I’ve been unwell).

I spoke to a out of hours GP yesterday evening and was advised to stop Thyroxine for 48hours to see if the symptoms go away.

I woke up this more still feeling unwell but my usual unwell and fatigue . The hangover feeling, headaches, nausea and weakness had subsided.

Has anyone had a reaction to Thyroxine (T4) as my Doctors tell me I shouldn’t get reactions from it.

I am concern as what options do I have if I cannot take Thyroxine?

Thank you for any help you can give!

[Clutter]

Welcome to the forum, Melon_one.

I really wish doctors would wise up and stop telling patients that they shouldn't have adverse reactions to Levothyroxine. Patients often have to try different makes as the excipients and fillers in different makes of Levothyroxine can cause adverse reactions. However, it sounds like the rash you had was a reaction to the antibiotic not Levothyroxine.

Some people do feel worse when they first start taking Levothyroxine but the symptoms will usually improve after one to two weeks if you can push through them.

It may be worth asking your pharmacy to dispense Wockhardt 25mcg tablets as they have less ingredients than other makes and may be more tolerable.

There are 4 makes of Levothyroxine in the UK:

Mercury Pharma 25mcg, 50mcg, 100mcg.

Actavis (also known as Almus and NorthStarr) 50mcg and 100mcg.

Wockhardt 25mcg.

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

If you can't tolerate any of the UK Levothyroxine tablets you will have to try and persuade your GP to prescribe Tirosint Levothyroxine gel capsules or liquid thyroxine.

[melon_one in reply to Clutter]

Hello Clutter, Thank you I really appreciate you advice!

Yes I agree and think your right about the rash being sensitivity to penicillin not Levothyroxine.

It’s a bit of a relief to know there’s some options left to try even if it’s going to take a bit of trial and error.

I constantly get ‘I shouldnt’ and have to battle with GPs and consultants. Thank you for your advice I will be able to use that tomorrow when I go and hassle my GP!

Could I query a few things I’ve read?

Does the time of day help with side effects? I’ve read that taking the dose going to bed can help?

Does it help to take selenium and iodine supplements?

Thank you again. Looking forward to feeling normal again (whatever that is!)

[Clutter in reply to melon_one]

Melon_one,

Research has shown that bedtime dosing can be more effective in bringing down TSH as long as you wait 2 hours after last drink or snack to take Levothyroxine. I don't know that it will make any difference to side effects. You'll have to try it and see.

100mcg - 200mcg selenium daily is good thyroid support. Take it 2 hours away from Levothyroxine.

Unless you have iodine deficiency I wouldn't supplement iodine as it can lower T4 hormone and raise TSH. You should get the iodine you require from Levothyroxine and your diet.

[melon_one in reply to Clutter]

Thank you I will talk to my GP about timing of dose and selenium.

[melon_one in reply to Clutter]

I spoke to my Endo team yesterday and was told that it’s nothing to do with the brands!

My nurse said that my TSH was a blip and I probably don’t need to go on Thyroxine. She said I had two options

1.) do nothing for 2-3weeks and retest TSH and see if TSH is still elevated.

2.) take 25mg and if I can tolerate it go up to 50mg after a week. Then retest TSH 6-8

Decided to try option 2 as I really think it’s not a blip. I also would be very happy to be proved wrong on ‘brands don’t cause reactions’ as that would make life so much easier!

I decided (after a lot of chasing different brands available locally to me) that I would try Mercury Pharma again in the hope that I wasn’t reacting to the brand but just not tolerating the dose. So I will stick to this brand keeping the variables the same and then hopefully everything is fine.

[Clutter in reply to melon_one]

Melon_one,

Your endo team and nurse are talking rubbish. Different makes with different excipients and fillers not only make a difference to people tolerating Levothyroxine but also to how they absorb it. If high TSH was a blip why are any of us prescribed Levothyroxine? TSH is high when T4 and T3 are low and the point of Levothyroxine is to replace the low T4 and T3 which reduces TSH.

I hope you are okay with the Mercury Pharma. If not, talk to your pharmacist and try one of the other makes I listed above.