Help, dose change problems!
Posted , 4 users are following.
Hi, I would be so grateful if anyone can shed any light on some problems I've been having. I take Levothyroxine following a total thyroidectomy 2013 during which they found a papillary cancer and so it was advised that my TSH is suppressed to 0.1. Generally Ive been on a dose around 125mg (sometimes alternating 100/125 depending on blood test results).
I had some health problems last year (gastro and glandular fever) and so my dose was swopped around quite a bit by GP (presumably the gastro problems were decreasing absorbtion). I ended up on 100mg for 6 months, before having a blood test where GP found my TSH was 8.4 so she freaked out and pushed my dose up to 150mg. Three weeks later my body went into absolute meltdown - racing heart, agitation, cramps, pins and needles, loss of appetite, shaking episodes, constant toilet trips. So GP advised to go down to 100mg but it seems to be taking me FOREVER to recover from what I assume was effects of too much Levothyroxine.
Its been almost a month now on reduced dose and although the shaking and palpitations have gone, I've got major problems with appetite, feeling nauseous and now terrible gastritis where I can eat very little at once and then get really dizzy, burping, nauseous.
Has anyone experienced anything like this?!? I can't work and am going to be in trouble for attendance as I've had to take so much time off. I'm so worried and so desperate to know when this horrendousness will end?? The first two years on 125 I was fine!
Help!
1 like, 7 replies
MtViewCatherine rosie34970
Posted
Hi Rosie. 100 units of thyroid medication is too low if you've had a thyroidectomy. Most people need 150-200 units.
However, if you increase it too fast, your body can freak out.
Also, the levo is T4 only, so you probably have T4 in the high end and T3 in the low end. This imbalance will also cause some of the problems you're having.
The side effects of the meds increase with dosage increases.
Some people add a T3 medication into the mix for this reason.
If if you want to pay for OTC meds on your own, ThyroGold is the best because it comes from bovine, which has a ratio closest to humans.
If you want to stick to ex, try an NDT- Naturethroid or Armour. Both are from porcine ;pig), so they have a lot more T3 than humans. This might help you initially, but you'll need a high a dose, which will result in too high T3, and more problems.
Hope that helps.
rosie34970 MtViewCatherine
Posted
Thankyou so much for your reply. I think you're totally right 100 is too low. 125 used to be fine though, and my t3 and t4 were always ok when they tested them (admittedly they only tested t3 infrequently). But I had 2 years on 125 and led a completely normal life. When you say gradual change - what do you think is safe? Going up to 125 from 100, or should I go for 112 for a few weeks first? A 50mg increase was evidently a stupid idea - wish I'd refused to increase that fast.
I'm not keen to try over the counter thyroid to be honest, just in case it makes matters worse. Or to try t3 unless blood tests say necessary, as I've heard it can make you really 'racey' and I can't cope with anymore of that. I think if my dose can get back to around 125 again I'll probably be ok. I'm quite petite so maybe that's why my 'ok' dose is lower than average. I suppose my main worry is whether these symptoms could be explained by levothyroxine dose changes or whether I have some other horrible illness as well :-(
rosie34970
Posted
Just thought I'd add my most recent blood test results - these are from a month ago, a few days before I started feeling really unwell when I was on 150:
Tsh: 0.44 (normal)
T4: 25 (high, normal is stated as 9-19)
T3: 3.7 (normal, range 2.6 - 5.7)
That was after just 3 weeks at 150.
Before that my tsh was 8.4 and free t4 16.5, t3 not tested (after 6 months 100mg). I did feel dizzy and exhausted but had attributed to post viral fatigue following glandular fever. Makes it so hard to tell what's going on!!
Neldog rosie34970
Posted
MtViewCatherine rosie34970
Posted
Rosie, so glad to help.
More... notice your T4 is a little above the high end of normal., while your T3 is more towards the low end. There is a ratio that is normal... If your T4 is on the high end, and your T3 is also on the high end, you'll feel a lot better. Right now, your T3 is low compared to tie T4. Make sense?
MtViewCatherine rosie34970
Posted
rosie34970
Posted
Thanks so much for help. The waiting list for an endocrinologist is 5 months here, even though my GP has written asking for me to be seen urgently. I've managed to get an appointment with a thyroid surgeon privately, as I'm sure he'll know more than my GP in the meantime. I'll definitely be out of a job if I have to wait that long before even starting to get my dose right! It's so confusing given the overlap between hypo and hyper symptoms.
I was wondering if my t3 might still be low as I'd only been on high dose 3 weeks, whereas t4 had risen already. goodness knows! Thanks for advice and fingers crossed the surgeon can help too...