Feeling worse: Been 5 weeks on Levo 25mcg for... - Thyroid UK

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Feeling worse

Joburton profile image
11 Replies

Been 5 weeks on Levo 25mcg for Hashi and am genuinely feeling even more tired that I was before! my extremities are less swollen but my facial edema is worse. I have a very p**sed off husband who is complaining that I was 'better' before and can't understand I need to continue this treatment for life.

I'm close to reaching the end of my tether.

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Joburton profile image
Joburton
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11 Replies
Numberone1 profile image
Numberone1

I think 25mcg is too low, its okay as a starting dose but what happens is your thyroid starts to not work and you're no better off if not worst than when you started. You should go back to your doctor for an increase now.

Joburton profile image
Joburton in reply toNumberone1

Thank you :)

I was holding out for 6 weeks, but I don't think I can! Would I have to get more bloods and wait for the results, or is it possible my GP would increase the dose on account of my symptoms alone?

Kel8 profile image
Kel8

Say you want an increase - blood test or not. You know your own body. After being diagnosed with hashis I started on 25mg and increased by 25mg every 5-6 weeks. It takes a long time to feel better I am afraid. Your husband will need to be patient ;-)

Hi, I'm so sorry to hear you feel so unwell... Please do go back to your GP. I was under medicated and mis -diagnosed for years and suffered terribly for it. Don't accept it fight your corner. Bless you and Go girl get that appointment soon. x

Joburton profile image
Joburton

Thank you all so much. I got into the doctors surgery an hour ago (not my usual gp) and tried to describe it all through the brain fog and stuttering. She is sending me for urgent blood tests... Including T3! I can't get an appointment until Friday, so will fast and go to the drop in clinic at the main hospital tomorrow morning.

I will ensure I don't take my Levo until afterwards of course ;) I'm a bit worried about driving in this state but thankfully have a friend coming along with me. I don't know what I would have done without you all and your advice. Knowledge really is power!

Clutter profile image
Clutter in reply toJoburton

Joburton, go as soon as the phlebotomy dept. opens, earlier the better as TSH will be highest then.

faith63 profile image
faith63

the dose is too low to raise thyroid levels, just high enough for them to lower, by way of it effecting TSH. Who told you 25 was anything but a dose for an infant? If a doctor, find a new one.

Joburton profile image
Joburton in reply tofaith63

It was my Endo who recommended the dose. I didn't like nor have any confidence in the man! However he did positively diagnose me with autoimmune thyroiditis after over 10 years trying to get heard.... then immediately discharged me from his clinic (so supportive, not!) I do trust my GP. I realise they are only following guidelines and I am prepared to take responsibility for fighting for myself now.

All it needed was the right blood tests and somebody to interpret them correctly. I'm so bitter about all these years of being told that results were 'normal' and only offered antidepressants. I know it's a familiar story to most of you.

I should have results within 48 hours of tests, so will keep you posted. Thank you.

faith63 profile image
faith63 in reply toJoburton

Are you in the US?

It is criminal, what they do, what they don't do! Their treatment of me has changed me. I don't trust. I feel scared and alone, with this. There is really nowhere to turn. That being said, Function medicine is the only place that looks for root causes for Hashi's and other autoimmune disease and can put it into remission. I refuse to take a pill and not treat my immune system. It makes no sense. The problem is not with the thyroid, but our immune systems. I have been on every type of thyroid med, at every dose and unfortunately, feel no better. Been ill since the end of 2008.

faith63 profile image
faith63

Push for a FREE t3, not t3.

Joburton profile image
Joburton

Update.... Bloods were taken a couple of days ago and the results are through. The obviously medically qualified receptionist blithely informed me that the results are 'normal' I had to really bite my tongue!

I will be picking up a printout in a bit so we can see where I sit in the ranges, then I can't get a consultation until next Wednesday.

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