Nausea and Ill feeling whilst on Levothyroxine - Thyroid UK

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Nausea and Ill feeling whilst on Levothyroxine

Lislaw
Lislaw

Hello - I’ve been on 50mg of Levothyroxine for about 2months it took quite a while for me to start feeling better (I had nausea in the mornings) and then I changed brand from actavis to northstar accord and I felt awful all week.. Ill feeling and completely wiped. I went back on actavis and felt better and then I told doc I thought it may be due to changing brands so the doctor prescribed actavis but then I found out from the chemist that accord is the new name for actavis? I was also on my period the week before I felt so bad so now I’m wondering if that may have been the cause as my periods are really heavy and clotty (sorry for being descriptive) so it feels like all my hormones could be out of whack. I haven’t had a blood test yet as they can’t offer them where I live for another few weeks as they have run out of a reagent needed so I’m now taking accord again in a bit of limbo. Feeling a little off today so worried I might have one of those bad weeks or it could be just in my head?! Would appreciate others experience with different brands and their monthly cycles and any other advice?! Thanks you :)

28 Replies
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Sometimes you can feel worse before you feel better when you first start Levothyroxine. We really need to see what your levels are now because you are probably ready for an increase.Just to add are you taking Levothyroxine on an empty stomach and a hour before food?

Lislaw
Lislaw in reply to Lora7again

Thanks for your reply....I’m taking the tablets as soon as I wake up. I did start to feel better after about 5 weeks so just trying to work out what caused the dip the other week as I felt better again when I found a packet of actavis even though it’s meant to be the same thing?! Could be unrelated but strange how it tied in to taking the new packet. Yes looking forward to when I can get the blood test to see where I am with it all :)

Lora7again
Lora7again in reply to Lislaw

I would ask a pharmacist about it if I was you because they know a lot more about drugs than doctors.

SeasideSusie
SeasideSusieAdministrator

Lislaw

Accord is the new name for Actavis.

Accord /Actavis /Northstar/Almus are all the same tablets made by Accord with different branding - Northstar for Lloyd's Pharmacy and Almus for Boots. The only exception is Northstar 25mcg is made by Teva.

Lislaw
Lislaw in reply to SeasideSusie

Thank you that’s very helpful...why do they have so many names for the same thing? Are there any other brands available and which are the ones that have the least additional components?

SeasideSusie
SeasideSusieAdministrator in reply to Lislaw

Lislaw

Yes there are other brands available and Helvella has a list. I can't link to it as I'm on my tablet not my PC.

helvella Can you provide a link to your list please, I can't see it in your profile (I may have missed it, not having the best day I'm afraid)

helvella
helvellaAdministrator in reply to SeasideSusie

Lislaw - this is my levothyroxine document:

dropbox.com/s/6h3h0qi4eqwi6...

helvella
helvellaAdministrator in reply to Lislaw

least additional components

What do you mean by that? It is very common for people to ask questions like this but:

Do you mean the number of ingredients?

Do you mean the quantity of excipients (ingredients other than the active ingredient)? (That is, the weight of the other ingredients.)

Remember, if you can tolerate all the ingredients, the amounts and numbers of them probably don't matter that much! :-) And it just takes a single ingredient you do not tolerate to have problems. :-(

Lislaw
Lislaw in reply to helvella

Yes sorry I did mean the quantity of excipients. I think I’m asking if there is a brand out there known to be the most tolerated/least likely to cause any issues or is everyone completely different?

Yes, I'm also suspicious of the new Accord. I've posted/commented about this fairly recently but I'll tell my story again in case it helps. (Sorry for long post!)

I was diagnosed 2 years ago. Was started on Northstar (Actavis). Felt awful for the first month and then slowly got better. Then after a couple of months, I was given Mercury Pharma. That brand made me feel SO tired. I asked my (previous... I moved away last year) doctor if it was possible that different brands have different strengths/effects, and she said absolutely not... which, in hindsight, is complete BS, in my experience. After talking to the pharmacist, they tried me on TEVA. That made my face puff up in 2 days so they were very quick to put me back on Actavis and keep me on it. Wrote it in my notes etc.

Anyway, I was given the new Accord tablets a few months ago - neither I or the pharmacy noticed the change at first. I started having an upset stomach every single day, when normally, things are a little more difficult in that department (sorry if TMI lol!) my heart rate started rocketing, overwhelming anxiety, intermittent nausea and constant adrenaline rushes. All the time for absolutely no reason. I've felt more and more exhausted and now I can barely function. I don't want to go out because I'm scared of if/when my stomach will decide it's time to dump everything I've not long eaten. It feels like my whole system has been sped right up! Weirdly enough, when I got my period last week, I felt fine. Stomach was perfect, no pain, no clots, none of the usual horrors. Then as soon as I finished, everything 'sped up' again. So, in my mind, I think periods/hormones must play a huge part.

I spoke to a random doctor at my new GP surgery last week and he said there's no way I could be overmedicated since it was only a few months since my last thyroid check and I was at optimal level then. (?!?!?!) I eventually managed to get a blood test form out of him but my goodness, I had to push him for it. Talk about dismissive!! My blood test is next week, so it'll be interesting to see if there's any change and/or if it's Accord. I'm not the only one on here to get these new side effects since the Accord change, so it may very well be that and not in your head!!

Lislaw
Lislaw in reply to PirateQueen

Thank you for sharing it is really helpful to hear everyone else’s story. So does anyone know if the accord change was only a change in the name or if anything else changed? Hope everything settles down with you soon.

PirateQueen
PirateQueen in reply to Lislaw

Apparently it’s only the name on the packet that’s changed.. but I think the feel of the tablet has changed too, they’re much more plastic-y now and harder to break, which suggests ingredients HAVE changed.

Lislaw
Lislaw in reply to PirateQueen

I wonder if there is a way to find out...there must be ingredient lists somewhere I’m sure someone in this group would know?

SeasideSusie
SeasideSusieAdministrator in reply to Lislaw

Ingredients listed on ThyroidUK's main website here:

thyroiduk.org/medications-f...

Partner20
Partner20 in reply to Lislaw

Accord took over Actavis, but the products and formulations remained the same. If you need the formulation of any medication or supplement it is in the PIL, which is supplied to you with your medication or you can find online.

SeasideSusie
SeasideSusieAdministrator in reply to PirateQueen

I have been using Actavis for many years, now Accord. I cut the 50mcg tablets with a pill cutter and mine are no more difficult to cut now than previously.

Ah ok, yeah I halve mine with my nails and it feels different to me

Lislaw
Lislaw in reply to PirateQueen

Can I ask why you cut up your pills - do you space the dose during the day?

Lislaw
Lislaw in reply to SeasideSusie

Can I ask why you cut up your pills - do you space the dose during the day?

SeasideSusie
SeasideSusieAdministrator in reply to Lislaw

Lislaw

I take 125mcg Accord daily. They don't do a 25mcg pill. I am precribed 100s and 50s. I cut a 50mcg pill in half to give me the 25mcg.

Did you just switch the dose?

For me personally, when I switch the dose, up or down, I get nausea.

SlowDragon
SlowDragonAdministrator

50mcg levothyroxine is only a starter dose

Bloods should be retested 6-8 weeks after each dose increase

Have you had new blood test done yet?

Aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until TSH is under 2, Ft4 in top third of range and Ft3 at least 60% through range

Essential to test vitamin D, folate, ferritin and B12 too

Have these been tested

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

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 vitamins including folate (private blood draw required)

medichecks.com/products/thy...

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

Lislaw
Lislaw in reply to SlowDragon

Thanks so much for your reply that’s all really helpful. I haven’t had a blood test since I’ve been taking levothyroxine as they aren’t offering them at the moment due to a cockup at the testing centre so I have to wait a couple more weeks. Would it be worth taking supplements for the vitamins you have listed anyway or would overdosing also be an issue? I do have the antibodies - I have had that test done.

SlowDragon
SlowDragonAdministrator in reply to Lislaw

Yes there’s current national issue with many blood tests ....Roche moved warehouses and there was a mess up ....hopefully all testing will be ok soon

Don’t start any B vitamins before testing

Only add one supplement at a time and wait 2 weeks to assess any changes before considering adding another

Perhaps start with magnesium, as there’s little point testing magnesium and most people are low in magnesium. It’s needed for good vitamin D too

Any magnesium supplement is best taken afternoon or evening as helps improve sleep

All magnesium supplements must be four hours away from levothyroxine

Calm vitality magnesium powder is cheap and easy to use. Can help improve constipation, best start on low dose as too much can cause diarrhoea

NHS rarely tests more than TSH.....Ft4 if your lucky

You will need to push hard to get vitamins tested, especially vitamin D

If GP won’t test

Vitamin D nhs postal kit here

vitamindtest.org.uk

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

With your Vit D, are you also taking it's important cofactors - magnesium and Vit K2-MK7?

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

I’d request a cortisol test to check your adrenals. Nausea is often a symptom of low cortisol. Have you ever had a cortisol blood test. If your GP refuses you can always get a private saliva test through Regenerus Laboratories promoted on here.

Lislaw
Lislaw in reply to McPammy

Hi no I haven’t had a cortisol test - I will look into that. I also regularly have a fast heart test even while in bed not sure if that ties into anything?

McPammy
McPammy in reply to Lislaw

Could be lack of thyroxine. Either Levothyroxine or Liothyronine (T3).

Hi. There is definitely something wrong with the accord brand. They may say only the name has changed and all ingredients etc are the same but since the change I’ve had awful hair loss, brain fog, blurry vision, fatigue, headaches, joint pain and anxiety (which I don’t get). I’ve gone onto 3x 25mcg of Mercury and lots of the symptoms have gone but now I’m having severe migraines again with aura. It’s so upsetting and frustrating as I was doing well on Actavis. I can’t live with these migraines every day but nor can I live with the other symptoms. I have no idea what to do and there’s not a lot of choice now. :-(

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