Accord: Hello I have congenital hypothyroidism... - Thyroid UK

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Accord

Barrs76 profile image
6 Replies

Hello

I have congenital hypothyroidism and have taken Thyroxine since I was a few days old. Apart from battling my weight all my life - struggling to maintain 62kg and energy levels I have led a normal life although very disciplined as was able to conceive easily in my late 30s and early 40’s as I kept a vigilant eye on my thyroxine.

I am now 47 and for the first time I am piling on the weight. A pound a week despite the increase of exercise, intermittent fasting and eliminating sugar. I find it hard to get out of bed and I have a craving for sleep. My thyroxine levels were tested in July and were normal. I am on 175 per day. However, my thyroxine brand has changed from Aristo to accord.

It might be a coincidence but has anyone had issues around using the Accord brand. My GP is insistent that a brand of the thyroxine makes no difference. I disagree but it will be good to hear some feedback on this brand. It could be that I am peri-menopausal, something my GP also refuses to accept even though I am 47. HRT flatly refused and told it je not needed. The GP is always right, rarely listens but the alternatives not much better.

Any advice on Accord. It could just be a coincidence that as soon as I started taking this brand. I have started feeling terrible but it could also be other issues going on?

Many thanks,

Barr76

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Barrs76 profile image
Barrs76
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6 Replies
SlowDragon profile image
SlowDragonAdministrator

Thousands of people find different brands of levothyroxine are not the same

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

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

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets hopefully available from summer 2024

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Helpful post about different brands

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Menopause often upsets thyroid levels too

and/or low vitamin levels more common as we get older

When were vitamin levels last tested

Test thyroid and vitamin levels 6-8 weeks after back on brand levothyroxine you prefer

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

DippyDame profile image
DippyDame

I'd suggest that you really need to have a full thyroid test (FTT) as SlowDragon has described.

Many of us do this privately, again follow SlowDragon's advice .

Your weight gain and exhaustion suggests that your FT3 is low which, amongst other issues, is causing your metabolism to slow down. This reduces the calories burned so causing both symptoms.

Something similar happened to me and I discovered that serum T3 level ( which is inactive) was no longer high enough to provide the " push" required to get enough T3 into the nuclei of cells. There, it should attach to the T3 receptors and become active, enabling it to fulfill it's function in all the tissues of the body. That's a very basic explanation!

Eventually I discovered that I have a form of Thyroid Hormone Resistance.

I suspect that I've always had this problem but there were no heel prick tests for newborns in 1945!

But.....try explaining that to a closed minded medic!

I had to research this myself, I had a number of health issues from an early age until I started to really struggle and requested a thyroid test. My GP hadn't considered the possibility!!

The results were clear....hypothyroidism! After 20 years on levo my weigh started to increase and I could barely function.....my journey is recorded in my bio.

A thyroid genetic test proved my T4 to T3 conversion was poor having inherited the Dio2 polymorphism from both parents.

T3 proved to be the answer....and I need a large dose which terrifies medics because they don't understand T3. I self medicate.

Thyroid weight gain is unlike other weight gain and can only be reduced by correct thyroid hormone levels....which is why an FTT is essential to establish the difference.

Perhaps it is the Accord that is to blame but I would first want to see FTT labs before coming to that conclusion.

I'm telling you of my experience, which is similarly shared with a few others here, because in current times the medical profession avoid T3 if they can. Yet, it is one of the most important hormones in the body. If cellular T3 is low, ill health and poor wellbeing follow.

I'd suggest it is vital that you have an FTT and in addition ensure that vit D, vit B12, folate and ferritin are optimal to support thyroid function/ treatment

With those labs you can start a process of elimination, perhaps try another brand of T4 for a start, and hopefully investigation will lead to the answer.

Request a consultation with an endocrinologist and if your ill informed GP refuses then complain to the Practice Manager. Your GP isn't fulfilling his responsibility to look after and to try to improve your health.

I don't know where they find some of today's GPs. Some of them forget that they are General Practitioners.... not specialists. Your wretched GP isn't always right....but you know that!

I hope it's the Accord....but if not you are now aware that there is another possibility. I wish I'd known about it decades ago!

Sorry about the long rant but poor thyroid care offered by doctors makes me see red!!

Good luck!

Beads profile image
Beads

I normally have Accord brand, I don’t have any issues with it. However for one prescription last summer I was given Aristo. Blood tests showed normal levels but i had no energy whatsoever, hubby was walking up the hills in front of me, waiting at the top for me to reach him, normally it’s the other way round.

So, yes, brands can make a very big difference.

You being given Accord instead of your usual Aristo could be due to Aristo have recently rebranded to Vencamil, someone correct me if I’m getting mixed up. If that’s the case you need to get the doc to prescribe vencamil rather than levo, then you’ll get the brand you need.

helvella profile image
helvellaAdministratorThyroid UK in reply to Beads

Agreed.

But I prefer Aristo Vencamil to Accord! (Though my packets still say "Aristo Levothyroxine" - I think they got bacth in and doel them out when my prescription arrives! :-) )

crimple profile image
crimple

Barrs76 I always had Accord, but last year my thyroid tests showed under treatment as T4 andT3 had decreased a lot even though I had not changed my doses of T3 andT4,

I changed to Vencamil/ Aristo been fine but did need to increase from 100 mcgm daily to 112.5 mcg. T3 dose stayed same.

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