Levothyroxine : Has anybody had any size effects... - Thyroid UK

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Levothyroxine

Louisebannister profile image
30 Replies

Has anybody had any size effects of leg oedema on levothyroxine? I was only diagnosed 2 months ago and started on 50mcg and have just upped to 75mcg. Only been on that dose a few days but legs are quite swollen

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Louisebannister
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Each dose change takes 6-8 weeks to have full effect so could be due to being hypothyroid

However

Which brand levothyroxine are you currently taking …has this changed from when on 50mcg

Teva is the only brand that makes 75mcg tablets……Teva upsets many people

What were your most recent thyroid results that caused dose increase

Have you had vitamin D, folate, ferritin and B12 tested

Are you currently taking any vitamin supplements

Louisebannister profile image
Louisebannister in reply to SlowDragon

Evening, thank you for your reply. I will have a look what brand they are. I asked for the increase as I had my first review and they told me I was in range and to recheck in 3 months as I was in range. My legs are swollen and I asked if I could increase to see how I get on. I'm going for diabetic bloods in the morning so will ask for results. Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to Louisebannister

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ask receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

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

Louisebannister profile image
Louisebannister in reply to SlowDragon

Hi I went and got my diabetic bloods done this morning and asked for a printout. On the 11th Jan TSH was 5.76,t4 was 14.4 and gamma t was 157 u/l. serum xabcy was 1300iu/ml. I was put on 50mcg then bloods in march was TSH 2.18 and free t4 was 14.3pmol/l and they said repeat in 3 months

SlowDragon profile image
SlowDragonAdministrator in reply to Louisebannister

What’s the range on Ft4 result

Which brand of levothyroxine was 50mcg tablets you were on ?

Teva is the ONLY brand that makes 75mcg tablets

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

Louisebannister profile image
Louisebannister in reply to SlowDragon

Afternoon, sorry I completely missed that you asked about the range. The free t4 is 10.5-21. TSH is 0.35-5.5 and the gamma T4 is 0-60. Hope this helps

SlowDragon profile image
SlowDragonAdministrator in reply to Louisebannister

FT4: 14.4 pmol/l (Range 10.5 - 21)

Ft4 was only 37.14% through range

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

Bloods should be retested 6-8 weeks after increasing to 75mcg

Always test early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Most people when adequately treated will have Ft4 at least 50-70% through range

Louisebannister profile image
Louisebannister in reply to SlowDragon

So for that to happen what sort of dosage do you need to be on?

SlowDragon profile image
SlowDragonAdministrator in reply to Louisebannister

Every person is different

But there’s a rough guide on dose by weight

Some people need higher dose…..others less

Poor gut absorption is common issue, especially if lactose intolerant or gluten intolerant

Optimal vitamin levels are essential

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/files/docs/...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

healthunlocked.com/thyroidu...

jamanetwork.com/journals/ja...

Lulu2607 profile image
Lulu2607

Hi. Before being diagnosed I had leg swelling but it was like the mucin swelling associated with hypothyroid, spongy, not firm. It eventually resolved after starting levo. Maybe you're at early days with your treatment as it does take a while for symptoms to improve once you start levo. If you were having a reaction to the drug I think it would affect more than just legs.

Louisebannister profile image
Louisebannister in reply to Lulu2607

Thank you. Maybe it is just get used to it

JOLLYDOLLY profile image
JOLLYDOLLY

Hi Louisebannister,

Your doses are starter doses, so you most probably will need several adjustments to get the right dose for you. One pill/dose does not fit everyone. I have always had a thyroid condition since birth, so been on medication and more or less the same dose for always especially in my teens and young adult life. However that all changed when I got to my 30's - A new GP dropped my dose dramatically and the oedema journey began. I won't bore you will all the details, but now I am back on my original dose plus some T3 and the oedema has really deflated, it will always be there for me, but very mild compared to what it was. It initially started in my left foot/ankle and leg.

Whatever you do, don't compare yourself to my journey or someone else's as we are all different in our journeys. Your oedema may only be a temp thing, whilst they are adjusting your medication.

I hope the medication will help and you will be on the right dose soon.

Take care

Louisebannister profile image
Louisebannister in reply to JOLLYDOLLY

Thank you. That is reassuring to hear. I'm a medical secretary and type everyday about patients having leg or ankle oedema and didn't realise it was so deflating. I had it mentioned that it might be the Teva brand and definitely the 75mcg that I have been given are Teva. Hopefully it'll calm down. Thank you again

JOLLYDOLLY profile image
JOLLYDOLLY in reply to Louisebannister

No problem, Teva unfortunately is not a nice good brand and I understand it is the cheapest sadly. I can't have it due to the side effects and it causes headaches. My current brand is Morning side. I have to say my pharmacist is very good and always makes sure that the Morning side brand is in for me. They have put it on my record for not being prescribed it.

One tip though, is when you are next due for a blood test, do not take your medication before it is done, only after. It can cause a false reading on the results and you want the best outcome. Some medical professionals will argue that is not true, but I think a pharmacist will know more.

tattybogle profile image
tattybogle in reply to JOLLYDOLLY

it 's not really that Teva is cheaper/ or any less 'good ' ,.... pretty much all uk levo is approx £1 a packet (apart from Teva 12.5mcg's that are about £13 a packet for some ludicrous reason )

Teva does suit some people better than any other brand .. they just seem to be in the minority... but for those that do need it's the 'best' one.

Louisebannister profile image
Louisebannister in reply to tattybogle

Thank you, I think Teva is a cheaper brand as have had it in the past four my diabetic meds too

helvella profile image
helvellaAdministratorThyroid UK in reply to Louisebannister

The official NHS drug tariff prices are the same for all makes of levothyroxine.

However, the somewhat confusing NHS indicative prices can vary.

bnf.nice.org.uk/medicinal-f...

This link shows prices by distributor - not brands/makes/manufacturers so are not always obvious.

tattybogle profile image
tattybogle in reply to helvella

confirms what we all thought ..... GP's are not good at maths :

75mcg prescribed as (25 mcg +50mcg) = £1.88

75mcg prescribed as 75mcg = £2.58

~ yet they often prescribe 75mcg (Teva) tablets to people who don't even need /want Teva (who then have the hassle of getting it changed to 25+50 of 'something else')

I shall no longer feel so guilty about costing them double by getting my prescription as (2 x 50mcg) £1.80 rather than (1 x 100mcg) 0.89p

helvella profile image
helvellaAdministratorThyroid UK in reply to tattybogle

Depending on exactly the relationship between prescriptions and tablets, you might also need to consider the dispensing fees.

That is, the 75 will be one, but 50 + 25 could end up being two.

tattybogle profile image
tattybogle in reply to helvella

fair point :)

Louisebannister profile image
Louisebannister in reply to JOLLYDOLLY

I might see how I get on and mention at next bloods. I have quite a few family members with hashimotos and one of my cousin's said not to take meds before blood tests so I didn't last time x

Lulu2607 profile image
Lulu2607 in reply to Louisebannister

Hi Louise bannister. Just to add that if your job involves sitting for most of the day that can make the swelling worse. Have you got a footstool or footrest? It makes a lot of difference, I still like to raise my feet where possible but I'm quite short Does your swelling go down overnight, is it firm or soft? That's an indicator of whether it's fluid or something else.I also don't take Teva which gave me bad headaches too, so I get 50s and 25s. Might be worth trying another brand just to see if it's part of the. problem.

Louisebannister profile image
Louisebannister in reply to Lulu2607

At the minute I am still working from home and type for a lot of the day. So there is a lot of sitting but had the same job for years and only had the leg problem since starting the levo. It's worth thinking about. I will ask about changing to those doses at next bloods.

jamesal0 profile image
jamesal0

Hi Louise - at the risk of being told for F off. But you came here looking for help so .... What's your daily excise look like - oedema number one cause and fix is exercise . Movement - like brisk walking for an hour every day will fix.

Louisebannister profile image
Louisebannister in reply to jamesal0

Morning. I understand about the exercise thing. I work full time(sat at a desk) but do a job in the evening most nights so the walking for an hour would be hard to do but thinking on how to improve the exercise regime a bit more. I bought some tea that is supposed to help too and still using the furosemide. All very new so open to all suggestions

jamesal0 profile image
jamesal0 in reply to Louisebannister

When my health broke down 20 years ago - I realized, with out it, I couldnt go to work, provide for my family or have mental sanity . I changed stuff, and now take 1 hour for lunch 5 days a week - jog , swim or cycle.

Lulu2607 profile image
Lulu2607 in reply to Louisebannister

Hi Louise bannister. If you're on furosemide you may need to watch your fluid intake which may be contributing to the leg swelling. Could the swelling be due to a diabetes/ kidney problem?Also I'd be wary of any special (herbal?) teas if you have diabetes and thyroid issues.

Louisebannister profile image
Louisebannister in reply to Lulu2607

Morning, no I have had diabetes for a long time and my kidneys are regularly checked. The tea I bought it's safe, I checked before I bought it. I understand about the fluid intake but it's a short term thing to see if it helps so it's fine x

Lulu2607 profile image
Lulu2607 in reply to Louisebannister

OK. That's good. I didn't want to worry you but diabetes and kidney problems are often a cause of leg swelling and it's good that they've been ruled out. Hopefully it will improve now you're on levo.

Louisebannister profile image
Louisebannister in reply to Lulu2607

Thank you for the reply x

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