Accord brand levothyroxine : Hi. Been on this... - Thyroid UK

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Accord brand levothyroxine

Bertybunny profile image
14 Replies

Hi. Been on this brand (100mcg) for 3 months and side effects are getting worse. At moment having lots of stomach issues. Has anybody else had problems with these ones ? Do you think it be worth changing brand or will it get better ? Thanks

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Bertybunny profile image
Bertybunny
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14 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

How long have you been diagnosed and treated?

Have you tried other brands that you might suit better?

Sometimes you still may not be on enough Levo which can cause symptoms.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Bertybunny profile image
Bertybunny in reply toJaydee1507

Hi, thanks for replying. Been diagnosed since Oct 23 after complete thyroidectomy. Did have thyroid anitbodies test but never got told result .latest bloods tsh 0.89 t4 21.8 t3 5.3. My b12 231 folate 5.0 not sure about ferretin but vit d was low and had high strength tablets. Have tried mercury pharma but can't seem to get them on regular basis so ended up with accord. You mentioned low stomach acid but doctor had recently put me on tablets ( omeprazole ) which had strange reaction and stopped taking. Could this be part of the problem or are they required ? Thanks

Jaydee1507 profile image
Jaydee1507Administrator in reply toBertybunny

Omeprazole is a PPI and will make low stomach acid worse meaning you will absorb even less nutrients from your diet. They aren't recommended anyway. Once you get your vitamins to better levels (and keep them there by continuously supplementing) your thyroid hormone will work better which should mean you have less symptoms.

Can you give me the ranges for each of those tests? This is important as ranges differ between labs.

Probably your biggest issue is likely to be your horribly low B12, low folate won;t be helping either.

Are you vegan or vegetarian? If not:

B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...

If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.

If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

Folate - aim for a level of 20. Recommend taking an active/methyl (should say on label) B complex which contains 400mcgs folate (also B12).

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

Have you continued to supplement vit D by buying your own? Likely you need 3,000iu per day.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2.

See if you can find a ferritin result.

Overall its possible that Accord brand doesnt suit you although its generally well tolerated.

To get the brand you want get GP to name it on your prescription in the first line. Then independent chemists are usually better for getting specific brands of medicines as they have access to more suppliers. Phone around and see who has what you need.

named brand prescription
SmallBlueThing profile image
SmallBlueThing in reply toJaydee1507

Best to include units. Folate for example, has always been in µg/L for my NHS tests and your aim of "20" is over the range of 2.6 - 17.3µg/L for one of mine.

helvella profile image
helvellaAdministrator

If it is the Accord that is causing you issues, there is absolutely no point in staying on it a tablet longer than necessary.

Have you taken any other makes?

Have you looked at all the excipients and considered which other make(s) would be sensible to try? Always a good idea to prepare before asking!

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

dropbox.com/s/bo2jzxucgp9hl...

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).

dropbox.com/scl/fi/gx6dmz5i...

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

helvella.blogspot.com/p/hel...

Regenallotment profile image
RegenallotmentAmbassador

Yes accord was awful for me. Lots of throat pain, gurgling, burping, upset stomach, low pains etc. Where I’m concerned I seem to be super sensitive to lactose in medications.

Definitely ask to try other makes

If you have low stomach acid too (I did) I really rate betaine with pepsin with meals. 🌱

SmallBlueThing profile image
SmallBlueThing in reply toRegenallotment

Are you implying you're not sensitive to lactose, otherwise?

Regenallotment profile image
RegenallotmentAmbassador in reply toSmallBlueThing

I didn’t know I was, put it that way,I used to drink a massive cocoa every evening and was a cheese demon.

I was (incorrectly) prescribed some HRT in my mid 40s and that made me burp loads, turned my stools yellow and I was led to believe these were perimenopause symptoms. Not true! All resolved by being 100% dairy free and avoiding lactose in all meds. 🌱

SmallBlueThing profile image
SmallBlueThing in reply toRegenallotment

Interesting, just had a read about late onset lactose intolerance.

My sister, as a pre-schooler, used to go to bed and vomit, every time we had cheese for supper. It took some time, by the process of elimination and without today's discussions of such matters, to get to the bottom of the problem.

I read of someone who cut out milk products as an experiment and met her maker when they were reintroduced, the takeaway message being not to rock the boat without good reason.

Regenallotment profile image
RegenallotmentAmbassador in reply toSmallBlueThing

Wow that’s amazing, my 86 year old Mum is making connections, apparently I was a pain to feed from the bottle (like they did mid 70s) she had to wean me early.

If I ever had double cream or too much cheese being greedy I’d be sick. 🤢

Sylvameadow profile image
Sylvameadow

Hi - I had completely different side effects, but they were brutal. On the tablets (both Accord and Teva) I got the worst rashes over my whole upper body, and my face swelled up like I'd been punched.

After a YEAR of this I finally persuaded my GP, on the advice of the pharmacist, to switch me to the liquid version (which is crazy expensive - £164 every 8 days on my dose!!!! - so I understand why they are loathe to prescribe it) which was fine for a few months, but then I started getting the rashes again.

I also have alopecia areata, so am losing hair in patches, which I'm not entirely sure is related as I had it as a young person, but anyway, it's in the mix now.

I have recently changed to T3 only tablets, and the rashes have gone! Energy levels were better than ever before for the first five weeks but I am definitely running out of energy by early evening again now (week 7.) I have a proper battery-dump and then the stairs feel unnecessarily challenging...

I am now seeing (at very large intervals) a real live endo (well, a real live endo on the phone, not IRL) - but it's taken the best part of three years to get here on the NHS. It was she who put me on the T3, not my GP.

It feels like the dose needs adjusting, but T3 may be the way forward for me. I'm doing a bit of reading about it, although a lot of it goes over my head. Paul Robinson does a book dedicated entirely to T3 as well as the book in the photo.

Reading this has really helped me understand my condition a bit better as no doctor has yet bothered to explain it to me.

I wonder if you should negotiate a trial of T3 only to see if your adverse reaction goes away?

Book cover
jacksnipe profile image
jacksnipe

I had to stop taking Accord due to a range of symptoms, including digestive issues, like you. I've tried many different brands of synthetic replacement T4 thyroid hormone since 2017 hypothyroidism diagnosis (Hashimoto's 2018) - including oral solution, sugar free, Levothyroxine and most recently, compounded Levothyroxine with rice being the only filler. None of which suited me! This prolonged experience of feeling so out of sorts led me to research excipients (fillers) in synthetic Levothyroxine and their possible side effects. I also talked to my local pharmacist and this led me to further research which I shared with my GP. This might not apply to you, but some patients don't respond well on T4 synthetic hormone replacement, this might be worth exploring as well ... NHS endocrinologist finally prescribed 10 mgm T3 but due to combined effects of excipients in Morningside Liothyronine and Zentiva oral solution, sugar free, Levothyroxine, I had to stop taking both brands. My GP supported a brand change and I'm since prescribed Thybon Henning T3 ( unlicensed in the UK, so Named Patient Request is required) together with Wockhardt Levothyroxine (25mgm tablets only, I was prescribed 3 daily). Due to local pharmacy supply issues, I approached Springfield Pharmacy in Richmond (see Thyroid UK pharmacy list) who specialise in Thyroid health and dispense NHS prescriptions ... NHS won't cover postage, but for me, knowing I can rely on receiving my regular prescription direct has saved so much stress, more so for finally arriving at a prescription with far fewer, illness causing, excipients. I hope you're not feeling too alone in all this and wish you well.

Helene- profile image
Helene-

Hello, in the beginning I was in London, I also had Levothyroxine Accord. I was not well. At least feeling different than with Euthyrox that I was taking previously in Germany. I also had like digestion problems and an important hair loss. I have heavily insisted at the NHS to change. I made my research and I found out that Levothyroxine Teva was lactose free. I finally could convince (hard work) the GP to prescribe Levothyroxine Teva Only. But then it was the pharmacy that did not want to give it to me systematically, only once in a while. So I changed pharmacy. And I finally took Levothyroxine Teva on the long term and I feel better. So maybe you can try another brand and see if you feel better. Make a research to find every brand of Levothyroxine that are sold in England, and check the excipients for each brand. And then try one on the long term and see if you feel better. My endocrinologists in France and Germany have always told me that once you find a brand that suits you, never change. It is not good to change brand when your body is well with one. When your body metabolise well one brand, stick on it and never change.

helvella profile image
helvellaAdministrator in reply toHelene-

I appreciate seeing a positive about Teva levothyroxine.

We see so much negative yet there are quite a number who do well on it.

The research on all available brand has already been done. :-)

Look at my earlier reply on this post.

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