I wrote a couple of weeks ago that I felt I was on too much Levo as I was feeling hot, headaches, not sleeping well, a bit hyper etc. I tried to test but unfortunately couldn't get enough blood out and the test failed. Got a replacement one free of charge. But now I've dropped my dose there's no point testing yet.
I think I also mentioned dizziness, this has now been carrying on for 2.5 weeks. Its not vertigo, there's no spinning, no hearing problems, tinnitus or any nausea. Just this horrible off balance feeling. It feels like I'm swaying. Like being drunk or hungover. I get it standing up or sitting down. And my head feels thick like cotton wool. I wondered if it was PPPD.
I have a phone consult with GP this morning. PPPD can affect the vestibular nerve in the brain and is often triggered by anxiety. In my case I had a bad migraine the day before this sensation started. Another trigger, but although I'm not consciously aware of feeling anxious I wondered if too much Levo might have made my body or brain think I am.
I've also noticed far more headaches and migraines since being on Levo. And wondered if that's a side effect? I was on 150mcg Levo and felt over medicated, had dropped to 137.5mcg but now in view of my symptoms should I drop quicker to 125mcg? Any advice gratefully received.
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Sparklingsunshine
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HiNo I increased to 150mcg in February and tried to test last week but MMH rejected the sample. So I've got no test results on that dose. Just symptoms.
I too have recently experienced increased anxiety & headaches (plus faster pulse & palpitations), so retested my thyroid bloods. I was slightly over range with T4, so have reduced very slowly over past 6 weeks, reducing by 12.5mcg alternate days for 3 weeks, then daily when my body adjusted to this. I’m going to retest 6-8 weeks after I’ve remained on a stable dose, so advise you do the same. Very best wishes to you sparkling sunshine!
I've spoken with GP and he thinks it's PPPD, persistent postural perceptual dizziness. So I've got to collect some Prochloperazine 5mg for a week. He's also given me something stronger than paracetamol for the migraines thankfully. I'm pretty limited on painkillers due to past allergies. Hoping they both work.
My GP said my blood pressure lowered on standing causing dizziness, but I’m not so sure as didn’t see this when used my BP machine at home. I didn’t take the vertigo medication I was prescribed & luckily the dizziness has passed.
I had all my vitamins tested in October, folate lowish so using B complex, ferritin very good. I get B 12 jabs so they never test B12. I get a named brand Accord at each prescription. I also supplement with Vitamin D as I've been deficient in the past.
I think it's too soon to be worrying about 'is it this or that? ' just yet .
You were on 125 until feb with TSH 0.03 fT4 51% fT3 43% .
you were on 150mcg since Feb. ( did you go straight up to 150 ?.. without trying 137.5)
then a couple of weeks ago you stopped and had about a week with no levo at all .
then you went on 137.5 and have been on that for only a few days so far .
~ If you were a bit overmedicated on 150 mcg .... you could expect it to be a few weeks ( at least 2 or 3 ) before you feel ok again even if you had immediately reduced to the exact 'right ' dose without the 'week off' (assuming you knew what the 'right dose' was .. which of course you don't)
~ That week of 'no levo at all' will have been very unsettling for many systems in your body , and so even though you have restarted levo again ,you would still expect to feel weird for a few weeks as a result of a week of no levo.... The sudden change from 150 to 0 will have done 'who knows what' to your TSH, and it will take it a while to settle down again .
TSH does 'do' things ... it affects what your deiodinases are up to T4 >>T3 conversion at different rates inside different cells .... it affects how much T4/T3 your thyroid puts out (or attempts to) ...and because it takes our TSH a long time to move / settle again , you can expect all sort of weirdness in the first few weeks after any significant dose change or interruption .
So you probably need to stick it out for 6 weeks on 137.5mcg ... and then get a tests to find out where you are on that dose ... or play it safe and go back to 125mcg .. but whichever you choose you then need to stick there for at least 6 weeks ......and whichever option you choose i would expect the first 4/5 weeks to feel 'not particularly great' while things settle down .
I think hormones like stability ..... i don't think its often the case that you find the right dose and feel better with a couple of weeks with no problem... i think it's more often the case that you find something like the right dose/ brand and it you don't fiddle with it, and allow stability .. then things improve very slowly/imperceptibly over a few months.
I'll try 137.5mcg. I got the dizzy feeling whilst on 150mcg and I read that Levo can cause dizziness and I figured if I was on too much that might not be helping. I'm pretty sure it's a completely separate issue as I'm dizzy on and off Levo.
The doctor suggested its PPPD maybe connected to the migraine I had the day before. Thanks for the advice. I know you're not supposed to muck about with doses but I've been feeling so crap for the last two weeks I was desperate 😪
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