Severe Reaction to Levothyroxine

[Goldengirl69]

I was Tacking Accord levothyroxine. But I think they give me lots if different makes. It makes no difference this a very bad drug.

[Lalatoot]

It is not a drug. It is replacement hormones. The same way that a diabetic replaces insulin, we hypos replace hormones.80% of hypothyroid patients manage to lead a fairly normal life taking levothyroxine as a replacement hormone.

For the rest, the 20%, we need to either find the correct dose of levothyroxine to be well or find the correct brand of levothyroxine to feel well or go for a replacement combination of t4 and t3 in some form. Very few go onto t3 only.

[1tuppence]

Perhaps you are experiencing difficulties with levothyroxine because you are not on a brand that suits you? I do best taking MercuryPharma/Eltroxin...they are the same. Other brands make me ill.

[Goldengirl69 in reply to 1tuppence]

Where do u get Mercury Pharma / Elotroxin ?

[helvella Administrator Thyroid UK in reply to Goldengirl69]

You get other makes from a pharmacy - just like you get Accord.

But you need to ask them for a different make. And you might have to ask several pharmacies to find one that can help.

[Goldengirl69 in reply to helvella]

Oh I go confused , of course there different makes. My heads so mashed from thos illness. U don't mean like another thyroid med literally . U just mean , change brand .

[helvella Administrator Thyroid UK in reply to Goldengirl69]

Yes. That is what I am suggesting.

[Goldengirl69 in reply to helvella]

I'm not sure . But something vague is tell me. They are giving me all sorts of brands. What difference does brand mean

[helvella Administrator Thyroid UK in reply to Goldengirl69]

The various brands have different ingredients.

The "levothyroxine" will be the same - but the other things needed to make tablets will vary.

Some of us find we are fine with these ingredients. Others are not.

So one make/brand might be much better than another.

[Goldengirl69 in reply to helvella]

Varie in what way. Will some not have additives in. ?

[helvella Administrator Thyroid UK in reply to Goldengirl69]

The amount of levothyroxine in a tablet is something like a single grain of sugar. So they have to use things to make sensible sized tablets and make sure the tablets don't break up in the pack.

They all have several ingredients. But what they use varies. Some have lactose. One has mannitol. Two have acacia.

[Beachwalk in reply to helvella]

My doctor told me some even have talcum powder to bulk them out

[helvella Administrator Thyroid UK in reply to Beachwalk]

Yes - they use talc in some. But the reason is not necessarily 'to bulk them out'.

Just look at the Patient Information Leaflets and you can find the ingredients.

[Goldengirl69 in reply to helvella]

You mean I'm allowed to ask i Pharmacist in chemist , if they can change my brand . Surely that's not allowed, and I have to go through couldn't care a less doctor.

[helvella Administrator Thyroid UK in reply to Goldengirl69]

Your prescription most likely says:

Levothyroxine sodium 50mcg 28 tablets.

(Or something like that.) And the pharmacist could supply any UK levothyroxine product.

[1tuppence in reply to Goldengirl69]

My GP has written on my prescription that I need Eltroxin levothyroxine only. The pharmacist knows that is the brand of levothyroxine that I need, not any other brand. Other brands make me ill.

[Pattyboo65 in reply to Goldengirl69]

Boots. They both come under Alliance Healthcare

[Goldengirl69]

Thanks Tuppence x

[Levo1 in reply to Goldengirl69]

I have to specify Teva brand and my GP pharmacy respects this. Some other brands give me a terrible rash. As others have said, it is the fillers which usually cause the problem not the hormone itself. Other people on here cannot tolerate Teva and use another brand. It is different for everyone. One just has to experiment. Also, the dosage must be right. It takes time for a new dosage to kick in. It is all a fine balance but with perseverance and help from your GP you can get this right. Good luck.

[Luckyclaire]

I started Levothyroxin ten weeks ago, initially I was given a mix of brands, and different brands each prescription. The pharmacy called me every Friday and asked how I was feeling and coping with adjusting to the dose. I started having problems after introduction of Mercury Pharma, and after two weeks had the option to remove it and replace with a different brand. I got better and the pharmacy have noted to only give me Accord. We are all different. Acacia appears to be bad for me. If you speak to them Pharmacists can be very helpful and informed. They have rules about what they can and can't do, but do have options.

[CoeliacMum1 in reply to Luckyclaire]

I too recently had problems with mercury think the problem is acacia and finding this to a lesser degree (as not as much digested) with the better you vitamin D sprays, now looking for alternative.

[RedApple Administrator in reply to Luckyclaire]

Luckyclaire 'The pharmacy called me every Friday and asked how I was feeling and coping with adjusting to the dose. '

Gosh, that is so good to read! I don't recall ever hearing about this level of care from a UK pharmacy before. Not saying it doesn't happen, possibly it's just that we don't get such positive reports here on the forum. 😊

'If you speak to them Pharmacists can be very helpful and informed.'

This is certainly sometimes true, but we are still seeing far too many members reporting here that their pharmacist doesn't accept there are differences in how brands of levothyroxine can affect people. Many pharmacies are chain branches, and appear to simply dish out whichever brand comes to hand on the shelf at the time they fulfil the prescription.

[CoeliacMum1]

gov.uk/drug-safety-update/l...

My pharmacy actually told me this a year or so ago they’re aware people have reactions… you may get better advice from a good pharmacist than your GP/healthcare provider, in my opinion as GP/healthcare providers aren’t usually as up to date with drug information.

Synthetic drugs aren’t as well tolerated, mostly due to the fillers additives they use.

Hope you find a brand you tolerate and if not ask for liquid form which is often given to those who can’t take tablets and children… pharmacies prefer to find the brand you tolerate due to higher costs with liquid.

[Goldengirl69 in reply to CoeliacMum1]

Hi Coeliac Mum, is Liquid levo have no Additives or lactose? Or it still does. Also do I ask doctor or Pharmacist to change my levo brand if react to it. So that means , I maby need change to another chemist , if they don't want help me . I'm worry , it vague, but it possible , chemist have given me numerous Thyroid brands over years . If that's case . I don't know what to do. Help.

[CoeliacMum1 in reply to Goldengirl69]

The link I provided, explains what to do.

Regarding oral solutions (types snd ingredients) look at this

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

The brands you’ve had problems with require reporting, you do this via MHRA yellow card

yellowcard.mhra.gov.uk/

[Goldengirl69 in reply to CoeliacMum1]

Oh Thankyou so much Coeliacmum1. This is awesome information. I cant wait to show Doctor. She will have to give it to me. I hope. Have a great evening. 🙂

[Beachwalk]

Agreed. I came out in skin marks after 7 days and even 18 months later I still have them and waiting to see a dermatologist. My doctor took me straight of the tablets and gave me the liquid as it’s a pure drug with no additives to bulk like the tablets.

[RedApple Administrator in reply to Beachwalk]

Beachwalk 'gave me the liquid as it’s a pure drug with no additives to bulk like the tablets.'

Unfortunately, there's no such thing as a 'pure drug' when it comes to thyroid hormones. The difference between liquid and tablets is that the excipients (fillers) are in a liquid instead of powder. Look at the list of ingredients on the PIL that comes with your bottle of liquid levo. You will see that the amount of actual hormone itself is miniscule. The rest is whatever they use to make the medicine in a 'convenient to take' liquid form.

That said, some people most definitely do better with the liquid than any tablets.

[lostatsea2]

I had trouble finding a pharmacy who was willing to try and obtain a brand without a lactose filler. Found a great pharmacist who listened to my needs. Unfortunately, they could only get Teva which contains Mannitol.

Good pharmacists do exist

[Goldengirl69 in reply to lostatsea2]

Thankyou lostatsea2 . I think it depends on ur area. Every nearly every one of Pharmacy here is. Miserable and. Unhelpful. But I will try .

[Wetsuiter in reply to Goldengirl69]

Are you in England? There are postal pharmacies you can use. I use Cohen's and find it very convenient. (If I have to have an antibiotic or something the Dr sends the prescription to a local pharmacy)

[Neon65]

Hi, I know what you mean, being given so many different types of the tablet.

This surely is not a good idea, with side effects and everything else.

I have been on the tablets for years, and don't always look at what type there giving me.

Lately my hot flashes day and night are getting worst, doctors don't know what's causing it...but I am soaked, through the night and during work...its horrible.

They have tried HRT patches, which I found made it worst, so I've stopped that now., but I am still left with these horrendous flashes.

Tablets never ending side effects!!!

[Goldengirl69 in reply to Neon65]

Hi Neon, I hope you get to bottom of it. I get severe flushes to. But my sweating has stopped with it. They so Nasty aren't they . You feel like a Shock beyond has come to u. X

[Litatamon]

What are the issues you are having with levothyroxine Golden girl? Can you list them? (I see you have listed flushes in your last post, anything else?)

I myself have given levothyroxine a go twice, for long bouts of time & have determined I do not do well on that specific hormone. Even with liothyronine added. In Canada, besides compounding of course, we only have two options for levothyroxine- Synthroid & Eltroxin. Both have lactose. And liquid levothyroxine is not available here, the pharmacists do not even know what I am talking about. Stating this because you are fortunate in the UK to have so many options, but especially lactose-free.

(Right now I am on NDT, Efra)

In case it is a erroneous dosage causing reactions, are you able to post some labs for members to look at, with your exact dosage?

All the best to you. I hope this gets worked out soon.