under active thyroid : I’ve been feeling unwell... - Thyroid UK

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under active thyroid

David8754 profile image
16 Replies

I’ve been feeling unwell affecting my eyes head heart palpitations weakness I had my thyroid checked my tsh is 33 t4 is 10 t3 was ok I was put on 125 mg of levothyroxine is this to much of a dose as I feel this is to high as it’s still making me feel bad

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David8754
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PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

Was this a dose adjustment or starting dose? That a high starting dose. Standard is 50mcg. Then 25mcg increments every 6 - 8 weeks after retesting levels.

Some can struggle with higher dose, especially if vitamin are low and body doesn’t convert to FT3 adequately. Your final replacing dose may be higher.

Your TSH is quite high, dr might have thought you’d save time to start higher.

Have antibodies been tested? TPO & TG antibodies?

David8754 profile image
David8754 in reply toPurpleNails

Yes everything been tested just very low vitamins so I’m on 800iu daily the doctor said I’m needing the high Levo cause it’s bad levels

PurpleNails profile image
PurpleNailsAdministrator in reply toDavid8754

Please add vitamin results.

Have folate, ferritin, B12 been tested?

Always add lab range ( ranges vary between labs so always needed)

Drs only obligated to treat deficiencies. You need optimal levels. 800iu is an extremely low dose for low vitamin D.

Can be counterintuitive to start on higher dose & can be a shock to system. The TSH will drop as your FT4 & FT3 levels rise. I can take 6- 8 weeks to settle. Has a retest been scheduled?

David8754 profile image
David8754 in reply toPurpleNails

He started me on 20.000iu twice aweek but I felt unwell on them maybe I’ll take two 800iu tablets a day instead off one

SlowDragon profile image
SlowDragonAmbassador

welcome to the forum

Your high TSH and low Ft4 confirm you are hypothyroid

How old are you

Presumably male looking at your forum name?

Typically patients are started at 50mcg or 75mcg initially

But guidelines do say doctors can start people on full replacement dose - usually that’s approximately 1.6mcg levothyroxine per kilo of your weight per day

However starting on full dose can be “too much too fast” especially if you have been hypothyroid a while

How long have you been taking 125mcg

Which brand of levothyroxine are 100mcg and 25mcg tablets

Many people find different brands are not all the same

also has GP tested TPO and TG thyroid antibodies to see if cause of your hypothyroidism is autoimmune

And important to test vitamin D, folate, ferritin and B12

These are often low when hypothyroid and may need improvement by supplements

David8754 profile image
David8754 in reply toSlowDragon

I’m on acord for the 100mg and tevi for my 25 mg I’m 43

SlowDragon profile image
SlowDragonAmbassador in reply toDavid8754

Teva brand upsets many people

Accord don’t make 25mcg tablets

You could experiment with taking just Accord

Cut a 100mcg into 1/4’s using sharp scalpel or pill cutter to get 25mcg

Use a weekly pill dispenser to store spare 1/4’s

Are you taking levothyroxine early morning or bedtime

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Post about Timings

healthunlocked.com/thyroidu...

David8754 profile image
David8754 in reply toSlowDragon

Is it safe to cut a tablet though

SlowDragon profile image
SlowDragonAmbassador in reply toDavid8754

Yes absolutely fine to cut tablets

Save the other half in pill dispenser for next day

Levo is a storage hormone. Dose doesn’t have to be same every day

Some people take 100mcg and 125mcg on alternate days to get an average of 112.5mcg daily….or similar

Some people split their Levo taking half dose in morning and remaining dose at bedtime

David8754 profile image
David8754 in reply toSlowDragon

Ok Thankyou I will take my 100mg and then half the other I was ok till I started this brand Thankyou so much

SlowDragon profile image
SlowDragonAmbassador in reply toDavid8754

cut a 100mcg Accord into 1/4’s to get 25mcg

Assuming you have enough 100mcg until you get new prescription from GP

sharp craft scalpel like this

hobbycraft.co.uk/swann-mort...

SlowDragon profile image
SlowDragonAmbassador

How long have you been on 125mcg

Many people find Levothyroxine brands are not interchangeable.

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

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

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

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

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 

July 2024

Crescent levothyroxine. Dosages: 12.5, 25, 50, 75, 100

(Not yet known if all approved dosages are or will be available).

Excipients: lactose monohydrate, maize starch, croscarmellose sodium, gelatin and magnesium stearate.

Lactose free brands - currently Vencamil or Teva

Vencamil is lactose free and mannitol free. originally only available as 100mcg only, but 25mcg, 50mcg and 75mcg tablets became available Sept 2024

Prior to March 2023 Vencamil was called Aristo

Vencamil often very well tolerated/best option for many people

How to get Vencamil stocked at your local pharmacy

healthunlocked.com/thyroidu...

Posts discussing Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu....

Teva makes 12.5mcg 25mcg, 50mcg, 75mcg and 100mcg

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

Teva is lactose free, but 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 

Helpful post about Teva

healthunlocked.com/thyroidu...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Relatively new ……Hillcross brand

This is a box, rather than a brand. 50mcg and 100mcg are Accord brand….but beware 25mcg is Teva brand

Helpful post about different brands

healthunlocked.com/thyroidu...

List of different brands available in U.K.

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

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).

And here

pharmacymagazine.co.uk/clin...

David8754 profile image
David8754 in reply toSlowDragon

I’m going to see if they can change the brand of Teva Thankyou for that information

SlowDragon profile image
SlowDragonAmbassador in reply toDavid8754

Alternative to Teva 25mcg are

Wockhardt 25mcg

Mercury Pharma 25mcg

Vencamil 25mcg

Or ask GP to change prescription to Accord 50mcg and cut in half to get 25mcg

How long have you been taking 125mcg

Have you had blood test since being on this dose

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)

SlowDragon profile image
SlowDragonAmbassador

800iu vitamin D is extremely low dose

Exactly what was vitamin D result

When hypothyroid we frequently need higher dose vitamin D than average patient

Vitamin D tablets or gels should be at least 4 hours away from taking levothyroxine

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

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

Some areas will prescribe to bring levels to 75nmol or even 80nmol

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...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/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 when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. Also does NOT need to be four hours away from taking levothyroxine

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

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

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking 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...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

cassmith55 profile image
cassmith55

hi I was born without a Thyroid gland and I use to take 125 or 150 mgs when I was younger but now I am on 75 mgs Levothyroxine Tablets as I am 64 . And I also get problems with my Heart and my blood pressure keeps going up high like 175/90 . And I have been trying to get into seeing my GP but no luck at all. And I am due for my Thyroid Blood Test this month to check if I need less or more off the Thyroxine Tablets. I have been on it all my life. So all the best getting yours sorted out.

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