Side Effects!: I've been on levo about a week and... - Thyroid UK

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Side Effects!

Lozza812 profile image
26 Replies

I've been on levo about a week and a half and I've been surprised at ' what I think' are the side effects...

I have really quite bad muscle pain and cramps in my thighs which doesn't go away with strong painkillers. I also have osteoarthritis, so I'm used to certain levels of background pain, but this is above and beyond...

And...

I've started my first period in 5 years 😲 - I wasn't expecting that, thought I was in menopause.

Is this normal? I don't have my full results yet, GP started me on 100 mcg

I just want to feel well again, even if I don't remember what that actually feels like!

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Lozza812 profile image
Lozza812
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26 Replies
ShinyB profile image
ShinyB

Hi and welcome :) I'm afraid I don't know the answer to your question - others will though. I just wanted to say I'd be horrified if I suddenly had a period after five years too! :O And, I had a look at your other post - I also have dyscalculia... It is hard work looking at the test results when you are numerically dyslexic - but there are some great people on here who will help you with them. Hope you get some answers soon :)

bantam12 profile image
bantam12

100mcg is a high dose to start on, usually it's 25 or 50mcg, you could try dropping down to 50 and see if it's any better.

Clutter profile image
Clutter

Lozza812,

If you have no periods for 12 months it is menopause. You should see your GP about having a period after so long.

Hard to say whether 100mcg is a high dose or not without seeing your results but you can certainly halve the dose for a couple of weeks to see whether the adverse effects improve.

Hellonwheels profile image
Hellonwheels

Levo put me in so much pain... Sorry to hear it's happening to you. Went from 25 to 50, then I just quit and found a doctor who would give me NDT... They are hard to find, even in the States. I can tell you I feel great on NDT, with little to no pain.

Lozza812 profile image
Lozza812

Thanks everyone, I guess the good news is I'm not constipated anymore. I need to get my blood printout on Monday and ask the Doc to ring I think. The Doc I saw is also hypo so hopefully knows her stuff.

It is really reassuring to know you are out there to help, I was sitting having a little cry when my phone started pinging

Saggyuk profile image
Saggyuk

I felt worse at first as it was a shock to the system and 100 is a high starter dose especially if you have adrenal or other issues. It is normally started at 50 (25 in some cases) and then increased every six weeks until blood tests normalise.

THe other thing that can happen is the symptoms of nutritional deficiencies can be made worse when you start thyroid treatment as you're trying to push your body faster without the nutritional basis to be able to. Hypothyroid issues create problems with your stomach acids which can stop you absorbing things in your stomach so many are deficient in at least one or two things at diagnosis so i would get your B12, Folate, Iron/ferritin and Vit D checked and bring your results back. Some of these can cause symptoms you mention. You can get them done yourself for reasonable cost if docs refuse.

If you have thyroid antibodies and/or stomach issues, you might want to try a gluten free diet :-)

Saggyuk profile image
Saggyuk in reply to Saggyuk

Also a quick check of your sex hormones might be useful as hypo can cause lack of periods in some cases so it depends on how sure you were in menopause and how long you've been hypo for - it normally takes a while for diagnosis so likely been some time. Period pains can often refer down to your legs too? Mine used to be horrific and could barely walk.

Lozza812 profile image
Lozza812 in reply to Saggyuk

Thank you, my Doc suspects I have been hypo for a long while, I've been tested many times, but I changed doctors and this is the result! I feel like I've finally been listened to. I certainly have little in the way of eyebrows left

Lozza812 profile image
Lozza812 in reply to Lozza812

And Doc is doing all the other tests at the next bloods in 6 weeks

Saggyuk profile image
Saggyuk in reply to Lozza812

Good, sounds like one with some common sense at least :-) Bring back your results as nutritional levels are one area many docs tend to be a bit pants in and the ranges used by NHS are mostly a little out of date and far from optimal :-)

shaws profile image
shawsAdministrator in reply to Lozza812

He sounds a good and sympathetic doctor.

Saggyuk profile image
Saggyuk in reply to Lozza812

Yes, unfortunately many docs leave many of us ill for a long time so my best suggestion is to read up on what you can and help yourself get better so you don't have to rely on the docs. Glad you've finally found one who will at least listen. You can request print outs of our test results from the doctor's receptionist so always worth double checking them or posting them here :-)

Dee8686 profile image
Dee8686 in reply to Saggyuk

Saggyuk i never knew this. My periods have been out of whack for ages and my doctor assured me that it was unrelated to my thyroid. Hoping once my meds are sorted my cycle will normalise!

Lozza812 profile image
Lozza812

I will definitely need some help! And I've just discovered that tea has flouride in it that is not good for me! Give up tea😫I would almost rather give up gin!

Oh God! I don't have to do that do I ????

Fruitandnutcase profile image
Fruitandnutcase in reply to Lozza812

Oh no! I was like that when I was prescribed statins. I love pink grapefruit. In the end the statins did not agree with me - could barely walk because of muscle pains etc. So I dumped the statins and stuck with the pink grapefruit - no regrets about that.

I’ve just googled and found this paleohacks.com/tea/fluoride...

I’d be ok because I like very, very weak white tea and anyway I drink regular tea so weak a teabag can last me a whole week, I once drank a mug of hot water when we were camping because the camping mug was a bit stained my other half kept saying I hadn’t drunk my tea and I kept saying I had until he produced a dry teabag which proved I hadn’t!

Got a feeling though that if you love your tea you probably like it stronger than I do.

Lozza812 profile image
Lozza812 in reply to Fruitandnutcase

I'm afraid you're right, builders tea from Assam leaves 😱

ShinyB profile image
ShinyB in reply to Lozza812

Sorry, I'm laughing at your wail of distress here about giving up tea! I know how you feel. I never thought I would survive a day without my early morning cuppa minimum!

I've gone full circle and don't actually like tea that much now. It's weird how our taste buds acclimatise and change.

Saggyuk profile image
Saggyuk in reply to ShinyB

Lol - This is my one weakness - I simply can't figure out any way to stop drinking tea - I,m truly addicted lol!!

Angel_of_the_North profile image
Angel_of_the_North in reply to Lozza812

The fluoride in tea is not really the same as the fluoride added to water and toothpaste. Not saying you should drink gallons, but it is not a by product of aluminium smelting

Saggyuk profile image
Saggyuk in reply to Angel_of_the_North

Yes i believe natural flouride isn't so bad but haven't looked into it to be honest :-)

Lozza812 profile image
Lozza812 in reply to Saggyuk

Phew! Cutting down is something I know I should do anyway, but giving up altogether...

I suppose there are worse things to be addicted to.

silverfox7 profile image
silverfox7

Similar experience in that I went to the doctors as I thought I was needing a higher dose and as I left I said I hadn't had a period for 6 months so before I could blink I was put on HRT! Was on this for 10 years but still feeling undermedicated so I went to see my previous GP now in private practise who first treated me. He said I should go back to taking my basal temperature which I did and this showed I was still ovulating but not every month so I was in that phase where periods stop but be aware you could still get pregnant without precautions! So like me you probably weren't menopausal in the first place but under medicated.

Lozza812 profile image
Lozza812 in reply to silverfox7

My husband and my old labrador were very similar, when they became annoying I had them both done 😉

JanePound profile image
JanePound

I was going into menopause because I was on T4 only. When I changed doctors and T3 was added and then I went on to T3 alone, my ovaries woke up and I went on to have periods for another 10 years.

trelemorele profile image
trelemorele in reply to JanePound

Jane

How old were you when the menopause started before adding t3 and what were your meno symptoms?

How much t3 are you taking?

Thanks

JanePound profile image
JanePound in reply to trelemorele

I was 47 when I changed doctors. Not sure I had many symptoms that could be separated from under medicated hypothyroidism but the blood tests showed I was menopausal. He added 10 mcg, then more gradually until I was on 125 T4 and 30 T3. Then we tried extended release T3 alone and I’ve been on that for the last 17 years.

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