Worse before better? : I started  on meds 50 mg... - Thyroid UK

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Worse before better?

AnitaApple profile image
14 Replies

I started  on meds 50 mg two week  ago and I feel absolutely grim :( is it normal to get worse  before  it gets better? I feel like I've got jet lag and I'm dragging myself around revenant style through my day!!

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AnitaApple profile image
AnitaApple
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14 Replies
shaws profile image
shawsAdministrator

Unfortunately, yes. It is for many who begin due to the fact that it's taken years probably to become hypo and we cannot rush doses so have to go slowly.

You should have an increase every 6 to 8 weeks after a blood test which should be the earliest possible and don't eat before it. You can drink water. Also allow 24 hours approx between last dose and the test. This allows the TSH to be at its highest and that appears to be all the doctors notice. If they adjust up/down unecessarily we may feel quite unwell. The aim is to have a TSH of around 1 or lower. Some GPs think anywhere in range is fine - it isn't.

Pastille profile image
Pastille

Can I ask a question please based on the info above? My last increase was Dec 2015 to 100 mcg. Does that mean that I should wait a while before another increase? TSH 2.7 T4 19.3 

greygoose profile image
greygoose in reply toPastille

You should have been tested 6 weeks after your last increase. And if your TSH is still over one, then another increase is indicated.

Pastille profile image
Pastille in reply togreygoose

After being increased to 100mcg I was tested 6 weeks later and TSH was 1.9 and T4 was 24 doctor said that was fine so I said when shall I have more blood tests? he said oh about 3 months. Anyway I didn't leave it 3 months and TSH now 2.7 and T4 19.3 already. Doctor should have rang yesterday and didn't so just going to increase dose myself. Thanks

greygoose profile image
greygoose in reply toPastille

1.9 is still too high for someone on thyroid hormone replacement. It should be Under one, so he shouldn't have left you for so long.

Pastille profile image
Pastille in reply togreygoose

Thanks greygoose, your wisdom is always appreciated. 'to lessen suffering' I believe is one of the noblest things one can do. That's what makes this site so special :)  or maybe just 'thanks' :) lol

greygoose profile image
greygoose in reply toPastille

You're welcome. I wish I could do something more... specific to lessen suffering.

AnitaApple profile image
AnitaApple

Thank you for your reply I still don't understand why I would feel worse than I did before I started meds - is my body trying to get used to it ? I've got zero energy , mental sluggishness , irritability , I can't face the simplest task or interaction- even with my nearest and dearest it all seems like a mountain to overcome . It seems to get better as the day goes on and I'm almost human in the evening but first thing in the morning when I take the tablet I feel grim 

puffyface profile image
puffyface in reply toAnitaApple

I definitely felt worse after starting t4. After a while I moved to a t4, t3 combination, and now on t3 only and feel so much better, but am due blood tests so I don't know whether the gp will let me stay on this. The people on this site are incredibly helpful so I'm sure someone will know why we feel worse than before we started on thyroxine. It could just be your body getting used to it or it could be that you just need more. It could be that thyroxine doesn't agree with you. Talk to your doctor ( I hope you have someone helpful) and tell them your symptoms. A good doctor will listen to your symptoms as well as looking at your blood tests. Good luck and I hope you feel better soon. 

Fdodd profile image
Fdodd in reply toAnitaApple

Hi

I am in exactly the same boat if it makes you feel any better. Moved up to 50 mg Levo last Tuesday and feeling terrible! Numbness tingling and exhausted by any small task. I have my own business as well as workgroup for the NHS so always used to having lots of energy and now really struggling to do the slightest task.

Wondering how long it takes to feel any better or how long I leave it before seeing Gp again. I was told to book blood test in 1 month but really not sure I can function like this for a month!!!

Appreciate this isn't answering your question but good to know your not alone!

AnitaApple profile image
AnitaApple in reply toFdodd

Thank you Fdodd your post made me feel better just knowing  I'm not alone . Like you I have a demanding job and hectic lifestyle and I'm just not used to feeling like a slug with a massive hangover !!

Fdodd profile image
Fdodd in reply toAnitaApple

Forgot to mention I am also much better in the evening. I take mine at night last thing to try and combat this, but it doesn't seem to have helped since I moved up to 50mg. Hanging in there and hoping for some gradual improvement soon ! Hope you pick up soon too.

AnitaApple profile image
AnitaApple in reply toFdodd

Thank you Fdodd o appreciate you taking the time to offer hope ! I feel as though I can't keep going on to friends and family but I need to talk about it and find reassurance that there is 'light at the end of the thyroxine tunnel '!!!

Treepie profile image
Treepie

It is common,the body has to get used to the hormone but you need more.I was over 12 months before i began to feel alot betteralthough some symptoms went quickly.There is no quick fix ,sorry.

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