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Thyroid UK
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Levothyroxine making me worse

I'm at my witsends with this whole Thyroid issue.

I was diagnosed with hypothyroidism in October 2017 where my level was around 6 and the nurse said we should leave it and test again in 6 weeks time. The next test came back at 25 and she put me on Levothyroxine (Teva) 75mg after a week of taking these tablets I ended up in A&E thinking I was going to have a heart attack, I was so scared and my anxiety was through the roof.

The hospital then put me 25mg (Mercury Pharma) and after a week it had all calmed down. A week after that my throat started swelling so I thought I should increase my dose to 50mg which after a few days I my throat had gone. Two weeks in I was still taking 50mg and felt fine but was running out of tablets before my next test so I split the 75mg. A week later and to this point now the palpatations came back with sickness, loose bowls, headaches, shaking, hot and cold and very tired.

I've gone back onto the 25mg but I'm still not feeling better and I seem to be worse in the morning. I had my blood done and my level has reduce from 25 to 18 but I've never felt worse in my life. The doctor is calling me today to see what I want to do, whether its stay on 25mg increase to 50mg or change brands...I am now getting anxiety over making the right choice as it seems all options just make me worse. I just want to come off it all.

Can anyone offer some advice?

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Many members have had side effects from Teva and it sounds as if that brand doesn't suit you either.

You might be better sticking to Mercury Pharma but the 25mcg is likely to be too low for you to feel better. It might be a good idea to increase to 50mcg then retest after 6-8 weeks and seen how things are then. Don't mix brands.

I take it that the "level" you are talking about is TSH. That needs to come down to around 1 (where most people feel best) with FT4 and FT3 in the upper part of their ranges. Next test, ask GP to do the full thyroid panel

TSH

FT4

FT3

And ask for thyroid antibodies to be tested as well.

When you have your next test, post results with their reference ranges and members will comment.

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Thank you so much for your reply. Just to let you know I saw the doctor yesterday, he's putting me on 50mcg. I informed him about Teva and that I need to make sure I never get the brand again. He stated he couldn't choose which brand I get it depends on the pharmacy and what they stock.

He argued that the brand doesn't matter as they all contain the same ingredients, obviously I said well that doesn't seem the case, but anyway he was quite accommodating and said that he would put a note on my prescription stating (Not Teva)...he also said that he couldn't see Mercury Pharma on his system????

I'm feeling a bit better today, but I'll keep everyone informed on how I get with the 50mcg, thank you so much for your help.

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If you click on the first purple bar in this link thyroiduk.org/tuk/treatment... you will see the different UK brands of Levo and their ingredients. Almus is the same as Actavis (Almus is dispensed by Boots) and another one now is Northstar which is also Actavis. Teva is lactose free and contains Mannitol which the others don't seem to.

I always used to have Eltroxin named on my prescription (many years ago) and that brand became unavailable and I was given Actavis. I discussed it with the pharmacist, as he knew I had a named brand normally, and he said that if Actavis suited me then he would make a note to only give me that brand in future and there is always a label on my pharmacy bag stating "Actavis brand Levothyroxine" even though my prescription doesn't now state a brand.

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Hundreds on here have reported extremely bad reaction to Teva

Many, many patients find they only get on well with one brand

Like you, I prefer Mercury Pharma brand

You have to ring around pharmacies to find sometimes. Small independent pharmacies are most helpful. Boots refuses to supply Mercury Pharma even if it's written on your prescription

Different brands are not bio-equivalent. So if susceptible to changes in levels, as many of us are it's important to stick to one brand.

Watch out for brand change as dose increases. Always check the brand BEFORE leaving Pharmacy

You need to give your body time to adjust to each dose level. We usually start on 50mcg

Nice guidelines saying how to initiate and increase. Note most patients eventually require between 100mcg and 200mcg.

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

Bloods should be retested after 6-8 weeks and dose increased in 25mcg steps until TSH is around one and FT4 towards top of range

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Do you know if you have high thyroid antibodies? Have these been tested, if not request they are

High antibodies confirm that cause of being hypo is due to autoimmune thyroid disease (by far most common cause)

Also ask GP to test vitamin D, folate, ferritin and B12 if not done already. Especially if you have Hashimoto's. Low vitamin levels are very common

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Thanks for the advice. They have supplied me with Almus, I'm going to start taking them tomorrow, I just hope they don't make me even more sick.

I will do a bit of reading as per the links above. This is all really useful to know. Thanks

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How u feeling on almus? Any better? I have tried all brands but had allergic reaction -made me really sick I have never expierenced anything like this before in my life -breathless sharp stomach pain joint and muscle pains all over my body I just didn’t feel right as the pains started when I started this medication.So I decided to stop it as it was killing me inside and outside.i had very similar story as you I first started with Levothyroxine Almus 50mcg and had terrible muscle pains and had anxiety and ended in A&e myself than I stoped these and my tsh was 44 and I needed to go back to medication as I was so struggling and I started on 25mch Levothyroxine for a week MeecuryPharma this time and after a week I increased on 50mcg and than my muscles and joints started to ache .The pain became so severe that I could even walk properly.I have lost my job due to this all.Than I developed rush red spots everyday on my chest arms and I could not breath properly .So I decided to stop this medication as I thought that I will die ....and now I found Thiroyd NdT and this is my first day on it starting slowly and steady :) so far so good never felt better for months still long way to go but I felt that I was poisoning my body on levothyroxine.Different people have different side efffects or none.

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Hi, I'm doing OK I think...I've just started to get chest pains again but I'm pretty sure my dose is no where near right as yet. It's so sad to see everyone suffering like this! At the minute the chest pains are the symptom I'm finding that frightens me the most and the heart palpitations. They seem to be made worse if I have a few alcoholic drinks, to the point were I might as well not bother having a drink on a weekend as I suffer for the next 4 days with chest pains. How are you getting on with NDT?

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Hello

I had been taking Wockhart brand, 25mcg for a few months last year and then when I refilled my prescription I was given Teva. I had no idea that I should try to keep to the same brand. Anyway, the first day I took it I had the biggest and most dreadful nosebleed of my life. I thought I might bleed to death. And then as each day passed I felt worse and worse and worse to the weekend when I just stopped taking it. I felt OK on Saturday and not too bad on the Sunday but by Monday I was miserable, tired, anxious and in need. I went to the village pharmacy and begged for help. They were great. I have it on my record now that I need to have Wockhart and they said they would keep a supply in stock for me. They had to phone round several suppliers to find it for me but they did it. They gave me 1 packet of Mercury to tide me over for a week until they could get the Wockhart. I took 1 25mcg Mercury and 15 minutes later I was a new woman!

We really have to be careful about brands it seems. Now my GP surgery also has the brand against my name on my records.

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Please fill in a Yellow Card report on the Teva product. Follow this link:

yellowcard.mhra.gov.uk/

I am very pleased you had a good and helpful response from your pharmacy. They deserve proper credit. :-)

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Neither my GP, by private hormone doctor or the ENT doctor at the hospital would even countenance the nosebleed as being attributed to the Teva medication. But I am not a nosebleed person. It was horrible. I had just got up, in the bathroom fortunately, but with no clothes on. It poured for over an hour!

Should I fill in a card for it? That never occurred to me.

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Just fill in the report because you didn't like it - and say what happened. You are not being challenged - just be as accurate and honest as you can be.

It is not your job to have to decide whether it really is the cause of your nosebleed. Perhaps MHRA will receive a few similar reports? Perhaps not. If they do, then it should at least be recorded.

It would be very frustrating if you found there were loads of cases but no-one had reported it! :-)

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I'm on it now. Trouble is I can't remember the exact date. I'll have to guess.

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Do your best! Well done.

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It's done and sent. Thanks for pointing this out to me. I should have thought. No one took me seriously over it except the pharmacist. By the time I got to him a week later and begged for a supply of my original brand he could see what a state I was in.

Now, whenever I go in, he gives me a once over and then a smile. Making sure I'm not falling apart again. Sadly, that week of hell put me right back. I had been feeling much better before it. Now I'm still struggling to regain the way I felt before.

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You shouldn't even have had to know a report mechanism exists! Take no blame whatsoever.

When I started levothyroxine, I tried to insist it would make no difference which make I got. Well, it did make a difference - I got old formulation Teva - which was then removed from the market for failing to deliver the claimed dose. And the more subtle differences are important.

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I suspect I'd be OK on Mercury, given how it transformed me at the end of that week. But I daren't try anything other than Wockhart now.

Doctors are being a bit useless. I'm winging it on my own at present. Up to 50mcg and due a blood test (will have to be private because I want to know the FT3 level and have my antibodies checked) in 3 weeks time. I'm definitely feeling worse again now after a reasonable start on 50mcg, following a terrible Christmas switching to Naturthryoid for a month and then trying to wean off all meds on private doctor's orders. Naturethryoid had me climbing the walls with anxiety so I switched back to Levo and tried to do as she said to wean off it but I got to the point I could barely drag my feet along and function. So I took it into my own hands and went up to 50mcg. Much better, but far from well, for a week or so and now not so good. But brain does seem to work a bit better thank goodness. Horribly sad this evening and despite having been in the garden and done a little gentle gardening this afternoon. Being outside usually lifts me.

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