Feedback and thanks for all help received for "No Thyroid, on 50mcg of Levo and hypothyroid"

[CernCrystal]

Dear all - esp administrators - who supported me with invaluable information. While my Dr would not play ball and do relevant tests (at correct time and with drug/supplement fasting) I was led to research and information that started an improvement to my condition and has given me information to make the most of taking the low amount of levo I'm given in the future.

I now take levo bet 2am - 4am so that I can have a strong coffee (latte with cream) around 8am and leave 4 hours between taking levo and eating/drinking anything other than water.

I now avoid all carbs where possible as I have discovered that this really makes me tired and has a huge negative impact on my energy and brain alertness. Something that I wasn't aware of (should have been) before read what I was advised by yourselves. If I do have carbs it is in the evening when I don't usually need my brain or body for much!

I take D3 liquid capsules and B Complex every day.

I eat more of the foods that supplement B12 and B9.

I also exercise every day, no matter how tired or foggy I feel.

While I am not recovered and am still hypothyroid, I am no longer worried about losing my job and the black fog that descended (fast extreme lowering of mood) has lifted.

However, a happy mistake by the pharmacist at my surgery has recently led me to receive 4 months worth of levo at old dose of 75mcg. I have now been taking this for almost 2 weeks and already I can see improvements in my mobility (shaking and pins and needles are reduced and no longer in my face and mouth or across my chest), and I feel hopeful. My palpitations are also reduced.

I will have enough information to challenge the Dr to keep my dose at 75 now and also lead a better life than before. Oh and I'm losing weight which can only be good!

Thanks again!

[Regenallotment Ambassador]

awesome! Good work 👏👏👏 get on to that GP of yours and advocate for yourself, test again in 6 weeks and see if you might need 100 🤗 🌱🦋🌱

[arTistapple]

So pleased for you.

[Delilahmy]

hi CernCrystal fabulous to hear you are feeling improvement …. Xx

[pennyannie]

Hey there again :

Onwards and upwards !!

and since with divine intervention on your side -

keep that stash and get your T4 dose reinstated as a next step back to better health.

[shaws Administrator]

Well done and it is ridiculous that so many GPs seem to have no idea about dysfunctional thyroid glands.

I have had a couple of statements from one GP and I told him 'that's untrue' of whatever he stated to me. It was a few years ago now but he was near retirement. How did his previous hypo patients cope!

[SlowDragon Administrator]

Request that vitamin D, folate, ferritin and B12 are also tested at next test

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

Do you always get same brand at each prescription

[CernCrystal in reply to SlowDragon]

Thanks - hadn't thought of checking the actual meds. 25mg is Teva UK and 50 is Mercury Pharmaceuticals. Just checked and they have slightly different fillers. No it isn't always the same manufacturer (I had always assumed that we were given whatever was the cheapest on the mass market). I follow the pre blood test advice from yourselves inc drug fasting to the letter now.

[SlowDragon Administrator in reply to CernCrystal]

Teva upsets many people

Request new prescription for 25mcg Mercury Pharma brand levothyroxine

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz 

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots

 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)

Aristo (currently 100mcg only) is lactose free and mannitol free. 

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

 

List of different brands available in U.K.

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

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

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).

[CernCrystal in reply to SlowDragon]

Thank you - will action. Gosh there is so much to be aware of.