4th day on 25mcg levo, feeling awful: Hi I... - Thyroid UK

Thyroid UK

137,148 members160,828 posts

4th day on 25mcg levo, feeling awful

magsyh profile image
58 Replies

Hi I started on 25mcg of levo 4 days ago. This is the first day I can say I feel terrible? Ache all over, headache and a bit spaced out. Is this normal to feel like this so quickly? Will it pass? Heart rate 92. Any advice appreciated thank you xx

Written by
magsyh profile image
magsyh
To view profiles and participate in discussions please or .
Read more about...
58 Replies

Have you spoken to your doctor or phoned the Endocrinologist - whoever prescribed your Levothyroxine? Or Pharmacist.

All I can say is I didn't feel like that when I started mine. I started on 50mcg.

If it were me I would contact GP now and ask for urgent phone call back or urgent appointment today. They have to see you up until 6pm. Then it's Out of hours GP service which can be a nightmare here - trying to get an appointment.

Or you could go to A&E.

Try GP now. It's not normal.

X

🐥

Ps

I mean ask for Emergency appointment as you need to see doctor. (Not urgent).

The receptionist will ask your symptoms - tell them everything you 've just described here.

Have you checked your temperature? Is it raised?

X

🐥

magsyh profile image
magsyh in reply to Mary-intussuception

oooh now you are scaring me a bit? I cant go to my gp as they have all refused to give me levo. I have started the levo myself. Ive been unwell for 11 years much worse in the past 4 years. My tsh was 4.1 so they keep telling me im normal. My ft4 is low normal and so is my ft3. The way im feeling today is how i felt 4 years ago when i felt at my worst. Like I have flu almost. Woke up this morning burning pain in my back, shoulders and neck xx

Mary-intussuception profile image
Mary-intussuception in reply to magsyh

I wondered if it was flu. Have you checked your temperature?

wendypartridge profile image
wendypartridge in reply to magsyh

I dont think you should be self-medicating, You may have to tell your doctor what you have been taking ,where do you gets your meds from if not your doctor? When was your last blood test ? you may be doing more harm than good xx

magsyh profile image
magsyh in reply to wendypartridge

Dont worry im not doing this blind. Only after a lot of thought, research and consideration am I doing this. It was also as a last resort. I get regular private blood tests and will be doing this very carefully. Im taking german made levo bought it in a pharmacy in spain. I have all my other levels in order has taken me years to sort all that out but Im sure due to lack of thyroid hormone all these years my hormones are all to pot. I was given levo as a child but couldnt swollow it so they just gave up. Ive had a life of low t3 but docs wont help. Im fed up of being ill, fat and miserable with no energy to do nothing. Thank you for ur input and concern xx

wendypartridge profile image
wendypartridge in reply to magsyh

Your blood test does not look like you are under active.I don't think you really should be making such decisions, know matter how much research you do it does not make you a doctor, but as I said 'you may be doing more harm than good'.

magsyh profile image
magsyh in reply to wendypartridge

I would rather trust myself than a doctor all they have done is kept me ill. Ive seen so many doctors and they know nothing, they have no knowledge of thyroid. If I had been in another country rather than the uk I would have been helped years ago.

wendypartridge profile image
wendypartridge in reply to magsyh

you have not been diagnosed with a thyroid problem, all three doctors can't be wrong, but if taking unprescribed drugs helps you that's up to you, but i see your going through the menopause too, which throws up many horrible physical symptoms .I am not a doctor and i can tell by your blood tests you are neither hypo or hyper which is why the doctors won't treat you for a thyroid disorder, anyway all we all want is to feel better, I hope you do very soon xx

wendypartridge profile image
wendypartridge in reply to wendypartridge

Have you ever thought the reason the pills make you feel so bad is because you don't actual; need them, I think you should research the menopause or fibromyalgia

magsyh profile image
magsyh in reply to wendypartridge

I feel fine today so its not the levo making me feel strange. I keep having hormonal fluctuations that make me feel really bad. Fibro is just undiagnosed thyroid I have all the symptoms of that too. I have made the decision to help myself because I cant carry on having no life, no energy, its so bad I cant lift my grandson my muscles just wont do it, everytime i sit down i fall asleep. Docs cant find anything wrong and they are not interested. Everytime I see a doc they say we must get to the bottom of this. They do extensive blood tests when they all come back within range they say sorry no idea why you are like this. They refuse to test my hormones and they say my thyroid borderline. I have nearly all the hypo symptoms on that list and still they wont listen so I have to do this for myself. Im an intelligent woman, studied law so im not doubting myself xx

wendypartridge profile image
wendypartridge in reply to magsyh

Fibro is not anything to do with a thyroid disorder, also studying law does not make you a doctor. Hormones mess with our bodies i personally think in your case its a mixture of the menopause and fibro, taking thyroid pills does equate to having a thyroid disorder. I wish you luck and hope you feel better very soon x

dle11 profile image
dle11 in reply to magsyh

Please listen to the other replys. I found out that I am almost allergic to any form of t-4, and it could be the same thing with you. I take Cytomel, cannot take armor, Synthroid, or anything that is t-4. When I do I get sick just as you are describing. Many people cannot make t-3 from t-4. Look up Dr. Lowe, he was (died a few years ago) the leading Dr. on t-3 therapy. Many people cannot convert t-4, as he found out. Please, you could actually kill yourself! Too much Levothyroxin can cause stroke s, blood clots, heart attacks, and other deadly side effects! It is not something you should be doing without Dr.

Please find a Dr., soon!

magsyh profile image
magsyh in reply to dle11

Dont worry I have no intention of overdosing myself and i will be keeping a check on myself with private blood tests. A doc only gives u pills and does a lot of guessing. They havent a clue how anyone will react to what they are given. I will be taking far more care of me than any doctor would so dont worry i wont be taking any chances xx

greygoose profile image
greygoose in reply to magsyh

Have you had more than one test where the TSH is 4.1? If so, you are hypo. But, starting on 25 mcg was probably a mistake. The usual starting dose is 50 mcg, unless your are very young or very old, or have a heart condition.

Starting on too low a dose can make the thyroid stop what it was producing. So, for example, if your thyroid was producing 50 mcg T4, and you start taking 25 mcg, you have in fact suffered a reduction of 25 mcg, rather than an increase.

Having said that, I really think that four days is too soon for the levo to do anything, good or bad. It takes at least 7 days to be absorbed, and six weeks to feel the full effect.

If you feel really bad, stop taking the levo, and see if things change. Leave it a while, then get another test, and see what the TSH is then. Nothing is irreparable. You won't have done yourself any permanant damage, but just to play safe. :)

magsyh profile image
magsyh in reply to greygoose

I did wonder if I was being too cautious on 25? Im 59 and apart from hypo symptoms and hormonal problems no other health issues. My sister suggested I start on 25 as thats what she did, shes now on 150. I dont think I will need that much her tsh was 140. Mine jumps about between 2.8 and 4.1 its always different. I dont have hashis, antibodies very low. Ive had them tested 3 years running. 6 weeks ago t4 was 94(64-147) ft4 13 (10-22) ft3 4.1(3.1-6.8) tsh 2.86 (0.2-4.5) I have brought my tsh up by suppliments and natural progesterone but my free ts never change only my tsh??

greygoose profile image
greygoose in reply to magsyh

No, you can't bring your TSH up with supplements and natural progesterone, there's no connection. Anyway, you want to bring it down, not up. Of course your Frees won't change with that protocol, you need thyroid hormone to bring them up.

How much you need has nothing to do with how high your TSH was when you were diagnosed. You can't tell in advance how much you're going to need. But, it's still best to start on 50. :)

magsyh profile image
magsyh in reply to greygoose

ok thanks for that. So I should forget tsh and keep my eye on the frees? The suppliments I have been taking are b12, vitd, folate, magnesium, k2 and selenium. All these were low but now optimal and that improvement seems to have brought my tsh from 4.1 to 2.8?

greygoose profile image
greygoose in reply to magsyh

The TSH is less important than the Frees, yes.

When you did the tests where the TSH was at 4.1 and at 2.8, were they done at the same time of day, and both fasting? Have you had your antibodies tested.

Those supplements may have had an effect on your conversion, which may have improved enough to have an effect on your TSH, but I doubt if it would be to that extent. But, I assure you, supplements don't work directly on the TSH. If there's no other explanation, like time of day or Hashi's, then it's just coincidence.

magsyh profile image
magsyh in reply to greygoose

I think the answer may be the time of day. Im sure the 4.1 would have been morning no breakfast and the 2.8 is nearer lunchtime and breakfast. When I saw an Endo she took a blood test at 2pm after i had my lunch. The result was 1.8 she said there told you so nothing wrong with you! My antibodies are very low had them tested 3 years running. Im feeling much better today and pulse back to 75.

greygoose profile image
greygoose in reply to magsyh

Well, the time of day certainly makes a difference. I don't know if endos are aware of this or not. Perhaps they are and just think we aren't!

dle11 profile image
dle11 in reply to magsyh

Also zinc is important, as is magnesium.

Clutter profile image
Clutter in reply to magsyh

Magsyh,

You weren't too cautious starting on 25mcg. Some people do have adverse reactions at first. They usually subside within 2-3 weeks if you can stand to continue taking it.

MiniMum97 profile image
MiniMum97

Do you have a temperature?

magsyh profile image
magsyh in reply to MiniMum97

I am a bit flushed. Normally im always cold and chasing my husband about putting the heating up. Then when he does im too hot. I seem to tolerate a very short magin of temp. 21c and im cold 23c and im roasting. Trouble is I dont sweat xx

MiniMum97 profile image
MiniMum97 in reply to magsyh

You might just have a bug. 25mcg is a very small amount. And the symptoms you describe could be viral. I was prescribed levo today and my GP told me to watch for feeling hyper, excess energy, racing heart, confusion. Doesn't sound like you are getting anything like that?

Do you get a leaflet with your levo? It tells you in there what symptoms to look out for in case of thyroid crisis or allergy.

Not sure how old you are but my go also told me that thyroid crisis symptoms are more likely in older patients.

PS One of my symptoms is not being able to regulate my temp properly either. Either freezing or boiling and sweating!

magsyh profile image
magsyh in reply to MiniMum97

It could even be hormonal? Im 59 and still not through menopause yet. Ive never had a hot flush. 25mcg on day 4 I suppose is too low a dose to do much. I certainly dont feel hyper. Its like a bad day of hypo? I have been a mess of hormones for so many years now it drives me crazy. Docs wont do anything to help. They just say oh at your age u will soon be through menopause and you will be fine! They have been saying that for 11 years. Xx

MiniMum97 profile image
MiniMum97

Could be. Menopause symptoms are so wide ranging. Or you could be having hypo symptoms. I feel terrible today. Exhausted, headache, aching muscles, dizzy, spaced out, can't concentrate on anything anyone is saying. 25 mcg is a v low dose as you say. What were your blood test results before you started?

MiniMum97 profile image
MiniMum97 in reply to MiniMum97

Oh sorry you mentioned your results above. When you say T4 was low normal what was the result and ranges? I've been feeling increasingly awful for months and symptoms started years ago. Just been diagnosed as hypothyroid today with a TSH of 4.8 (top of range - 4.2) and a T4 of 10.9 (12-22). A few weeks ago my TSH was 4.32 and T4 11 something but still felt awful. (Sorry feeling too exhausted to get up to look at exact figures!). Prior to this my TSH was high in range. T4 has hovered around 11/12. Still felt awful then! So understand if you are not getting anywhere why you would want to try to self medicate. I was thinking of this a few times myself. You get so desperate!

If you are self-medicating you just make sure you are keeping an eye on. Your levels by regularly testing.

Could you afford a private consultation? Thyroid UK have lists of GPs and endos you could try. Often (check with them) you can just pay for the consultation, with tests and prescriptions being done via the GP.

This may be worth considering for your menopause symptoms too? A good endo could probably look at those too or you could go to a specialist "hormone" clinic.

Could be worth the investment.

magsyh profile image
magsyh in reply to MiniMum97

I have gone private and nhs seen loads of gps my husband even paid to see a harley street doctor all the same attitude tsh not high enough. 4 years ago i was in bed for months couldnt raise my arms above my head. I was speaking utter rubbish and my breathing was bad. The doc did blood tests and said sorry nothing we can do all bloods in normal range. They just left me to it. Its only due to the help ive had here from other members and the research ive done thats made me feel well enough to cope and feel quite a bit better my last blood test with bh 6 weeks ago my t4 was 94(64-147) ft4 13 (10-22) ft3 4.1(3.1-6.8) Ive seen an endo she was no good tried to tell me her ft4 was 11 and she was fine so i should be too. Nhs gynea hopeless ive seen them every year for 10 years all they do is repeat endo biopsies when they come back ok they just refer me back to doc. I keep asking them to check my hormones they refuse will only check fsh and m I'll mine is 78 so they say possibly menopausal then?? Im so fed up xx

MiniMum97 profile image
MiniMum97

If you're menopausal and have all these symptoms have they not offered you HRT?

magsyh profile image
magsyh in reply to MiniMum97

They offered me estrogen , i said no i asked for progesterone they said no i had to have estrogen. I told them all my symptoms were do to lack of progesterone and estrogen dominance so i asked them to test my hormones. They refused and said oh it doesnt matter whats the point of hormones at ur age you must be close to menopause! I think my hormone, thyroid and late menopause are all related.

Jeppy profile image
Jeppy

Hi only to symPathise and can link with the menopause, thyroid link, I was all over the place and sadly cost me my marriage which made matters worse, I wish I had a good result to pass on but with hindsight I wish I had tried hrt, they wouldn't give it to me when I asked and pushed anti depressants at me which I couldn't do, so did it alone, you need to follow your gut instinct too is how I felt

just my journey

I took levo 25 last autumn after years of anxiety then I felt depressed, and the levo gave me a swimmy head especially when driving which was not good, doctor said stop as allergic??? Starting it again today but this will no doubt sound rediculous but am doing it, doctor said take half a 25 tablet, if this is what it takes to get on them Il do it, (have to live in between!) I wouldn't dare take a 50 now after my swimmy as have become a rather phobic I gather, and I had my bloods done privately and need D maybe B12 and will take selenium and mag 🤞 I get to a better place

Wish you well and keep posting

X

magsyh profile image
magsyh in reply to Jeppy

Thanks for that. I do understand as I too am a bit phobic taking the levo was a last resort for me but i have tried everything else. The doc tried the antidepressants on me for my menopausal anxiety they said but i said no. Im taking the german brand of levo. I upped my b12 and progesterone last night and so far today im feeling so much better so I think it was another hormonal episode. Ive had very light bleeding almost 3 weekly past few months and the acne is back across my chest. Im hoping if i can get the thyroid under control the hormones will start behaving themselves. Take care and I hope you can get the levo to work for you too xx

Ellishq profile image
Ellishq

If it's the Teva brand you're taking try switching to a different brand to see if it helps.

magsyh profile image
magsyh in reply to Ellishq

Im taking Eutirox its the german brand made by merck. Im feeling quite a bit better today so far. I upped my b12 and progesterone after feeling so bad yesterday. The progesterone calms me down and I slept really well so fingers crossed x

Kris10marie profile image
Kris10marie

You can definitely feel worse before you feel better, that was my experience.

Jeppy profile image
Jeppy

My tablets have wockhardt on box, so these different?

What form is your progesterone in? Has anyone tried the natural cream? Any good?

magsyh profile image
magsyh in reply to Jeppy

Hi the levo I have is eutirox by merck a german company. I use progesterone gel. Have done for years. Gynea told me i should stop using it. When i did the fibroids began to appear. Wish i hadnt listened to them. Have been back on it for over a year as i was diagnosed with adenymiosis privately. Nhs only tested for endo cancer not interested in anything else. It was negative so i was dumped back to gp. I use it for 3 weeks with a break of a week. Sometimes i dont last the week i feel very hypo when the progesterone drops too far. Exactly how i described a few days ago. Hurt all over and flushed like flu within a few hours of putting cream on my arm or where ever i feel well again. Docs wont listen they think its wildly funny and im bonkers! Xx

Jeppy profile image
Jeppy

Good for you, I tried progesterone cream Serenity at one time from a Guernsey company but didn't stick with it but made from plants, they say if you have enough progesterone in your body the other hormones can then deal with themselves ?

What is yours made from?

Can I ask if you are passed the meno?

I get hot now and again buntold it is more likely to be the thyroid and my body trying to control heat, it's strange to me I don't get cold, I do this fluctuation from warm then hot

magsyh profile image
magsyh in reply to Jeppy

Im 59 never had a hot flush or usual problems associated with menopause thats why they wont help me. They just scratch their heads and say, how old are u? Apart from early grey hair i dont look my age at all. No wrinkles, no age related illness etc, etc. Ive told them my thyroid and progesterone are too low. I have light bleeding and pms with hormonal acne havent gone a year without bleeding but no horrible cant cope period fof 2 years. All natural progesterone is made from plants? I buy mine from a company in cumbria. I cant cope with cold but i cant cope with heat on holiday. I swell up with fluid as i cant sweat. I cant regulate my temp at all my normal temp is usually 36c xx

Jeppy profile image
Jeppy

What is tsh out of interest. Are you treated ?

Jeppy profile image
Jeppy

Il look into the progesterone because my life is like a constant PMT! It only lasted 2 days and since meno I have symptoms \ feelings pretty much all the time

Thanks for reminder, please say how you got your hormones tested x

magsyh profile image
magsyh in reply to Jeppy

Ive never had a full hormone test as everytime i ask they say no. They have no interest in my progesterone levels because of my age. They tell me at my age i dont need progesterone. Thats a laugh!

Jeppy profile image
Jeppy

Ps

Funny I had only one night sweat only and me too never sweated

Jeppy profile image
Jeppy

And I can't cope with very hot weather now although I do t feel cold hardly

Jeppy profile image
Jeppy

Please tell me company, wouldnit be ok to start it now I wonder

Jeppy profile image
Jeppy

Goose was saying that you need a starter dose 'higher' than your natural output as it will counteract your natural output and leave you too low if on 25!!

.....I'm 2 days in on 12!!!! This is really a cat among pigeons (or Goose!)

as I am phobic.and could not start on 50 dose I know myself , i can feel what this tiny dose is doing right now as tinnitus louder and so sleepy

Unsure where this leaves us. Xxx

Jeppy profile image
Jeppy

How's it going xx

magsyh profile image
magsyh in reply to Jeppy

I am feeling better today but have started bleeding again so I guess this whole thing was actually hormonal. I always get very bad pmt when the hormones drop. It has been happening 3 weekly for past few months. Yes I know where does it leave us? 6 days now on 25, should i give it till next week and up it to 50. Will see if I feel any different. Im still sleeping as much through the day xx

Jeppy profile image
Jeppy

...I've had a sleep and only on 12!, just emailed and clutter answering re the low dose as I had talked myself out of it

I feel like you but not as solid as you, then think il try the progesterone and now gluten and dairy free will see what this brings and get all vits up to max!!! I have never done tablets as a natural fiend

So you are still having periods, amazing really, I've googled the progesterone but it appears to not be advised a few years after meno xx

Jeppy profile image
Jeppy

Glad you having better day

Wellsprings said that progesterone good till you 90!!

magsyh profile image
magsyh in reply to Jeppy

Yes progesterone got lots of plus points in moderation. I dont know why im still going through this hitting 60! Im like u very anti medication. This is why taking these the very last resort for me but its not like other pills its hormone replacement! I will pm you details about progesterone.

Jeppy profile image
Jeppy in reply to magsyh

Hi

Yes I'm over 60 so is it worth taking it now (the progesterone )? But if they think it's fine there is nothing to loose

For me, I always had a sense of anxiety and fear, and initially I swung into hyper and then hypo really, and I had just one big night sweat, I don't know which hormones were presenting worse but at that point I guess menos! Big bleeds

experienced a kind of burn out and couldn't get up ( for years since then I've kind of put a face on )

I hate this feeling I'm on a mission just to feel me, how long have you felt 👎🏻

Jeppy profile image
Jeppy

Ps

Are you keeping to the 25 dose? I'm confused again now about it ?

Unsure how it works, do we stop producing our own when we take the levo do you know?

Pity isn't it because we both in that range just outside, I'm still tempted to try myself but then this breathless scared me, but mayngomwoth the b12 and D

Do you know about the k2 I saw mentioned ?

Wysdym profile image
Wysdym in reply to Jeppy

I take k2 with my vit D3 every day. They are very synergistic.

Jeppy profile image
Jeppy

Thankyou I've read it up, I didn't know about k2

Is it the only k we need do you know? I'm nit taking calcium tabs are you?

Jeppy profile image
Jeppy

Sorry wysd it must seem like interview 😊 The mist difficult symptom for me at the moment is procrastinating and there isn't a tab for it !

You may also like...

Feeling really awful on Levo

few weeks ago, and I've increased my dose from 50 to 70 mcg levo about 10 days ago. I'm feeling...

Increased Levo, now feel awful again

mcgs alternate days. Five weeks ago I increased my dose to 100 mcgs a day. For the first week I...

Can 25mcg of Levo be enough?

After seeing Dr Skinner I started on 25mcg of Levo on 7th August, and have been fine. I take it at...

Endo doubts I take my 25mcg levo every day

with underactive thyroid Endo says he doubts I take my 25mcg levo every day and is reluctant to...

Asked to reduce to 25mcg levo

right thing to do? Was taking 175mcg levo November 2017 (175mcg levo) TSH 0.08 (0.2 - 4.2) Free T4...