Levo and exercise: Hi. Ive been on levo 100mcg... - Thyroid UK

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Levo and exercise

Burnetti profile image
7 Replies

Hi. Ive been on levo 100mcg for last 14 years (started post partum after baby no 2). My weight has continued to increase over the years since then til i maxed out at 15 stone and joined weight watchers. Initially i did quite well losing nearly 2 stone in a year but then i found no matter how hard i tried i couldn't keep it off and put a stone back on .by November last year..so january i bought a cross trainer and after several months i am now exercising like a ninja 3-4 times per week for 25 - 30 minutes. I eat really sensibly, more or less following the weight watchers program 5days out of 7 .... But i feel so rubbish. I have palpitations, fatigue and aching joints (in joints unrelated to the exercise) and worst of all i am actually putting on weight (and its not muscle!). Has anyone any experience of increased requirements of levo with exercise? Ive read that maybe my requirements are greater now my body is doing more and cells might have increased requirement? Should i consider changing to NDT? I'm beginning to wonder if the levo has ever really done that much ? I had early menopause at 42 (Im 51 now) and never had a huge amount of energy. Im gutted that despite my best efforts I'm constantly battling the weight thing and having to constantly work harder. Or am i being a big woos and looking for an easy fix? Going to see my GP next week but I'm not really expecting any great understanding or insight. Their routine letter came for blood check as I'm on thyroxine, and it said they would only contact me if the results were significant - why oh why do GPs still not consider that how a patient feels is as important than the blood results. :(

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Burnetti
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greygoose profile image
greygoose

It's probably your 'best efforts' that are making you put on more weight. Unless your FT3 is optimal, you cannot sustain that amount of exercise - have you ever had your FT3 tested?

When you're hypo, it's not too many calories or not enough exercise that makes you put on weight? So how can reducing your calories and increasing the exercise make you lose it? It's probably not even fat, anyway, it's water retention. And, the only way to get rid of that is optimise your FT3. But, if you're not getting enough calories, and then using them up exercising, your conversion will suffer, leaving you more hypo, and putting on more weight. This is something doctors ought to understand, but don't!

Time to take charge of your own health, me thinks! I'm pretty certain you're under-medicated on only 100 mcg levo - despite what your doctor might think. So, first step : get hold of your blood test results. When you've had the next test, ring the surgery and ask for a print-out - it's your legal right to have one. And, ask for the results for as far back as possible. You need to know exactly what was tested, and exactly what the result was - you could have some surprises!

The truth is doctors know little about thyroid, and care less. We're just a bunch of stupid, whingeing women. Who cares about us! Well, the answer to that is : we do! So, we're taking charge! :)

Burnetti profile image
Burnetti in reply to greygoose

Hi grey goose- thanks for all your encouragement. You sound as feisty as I am normally .. what a day ... I ache all over, pains in my ears, ( wtf?!) I’m dreading seeing Gp as I know I’ll talking to a brick wall ... and then the fight - normally I’d be up to it but my oomph has gone.

Your advice about exercise is pretty much the path I was heading down - going to give it a miss until I feel better. Def think It’s making me feel worse.,

are you on NDT ? Or just added in T3?

🤗

greygoose profile image
greygoose in reply to Burnetti

I'm actually on T3 with a little added levo. I was on T3 only for many years. :)

SlowDragon profile image
SlowDragonAdministrator

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results

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

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

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

Burnetti profile image
Burnetti in reply to SlowDragon

Hi slow dragon thanks for such a full reply - I was tested negative for hashimotis 14 years ago by a endo in Hong Kong as I was living there at time - he was really dismissive as I was negative and withdrew my treatment altogether and my gynaecologist who had started treatment promptly put me back on it. Maybe I should get it checked again.

Thanks for tip about testing before meds.

I am absolutely wiped today and have aches and pains everywhere. I’m not normally such a whine but I haven’t felt this bad in I can’t remember when😩

SlowDragon profile image
SlowDragonAdministrator in reply to Burnetti

Strongly suggest you get full private testing.

Low vitamin levels are extremely common as are food intolerances, especially gluten

SilverAvocado profile image
SilverAvocado in reply to Burnetti

Worth retesting for Hashimotos, as it is a test that has false negatives. If you definitely don't have it you might want to do a bit of digging to see if you can find the cause. It's quite rare to be hypo without Hashimotos, and there may be other hormone problems with it.

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