Here are my latest bloods after 6&1/2 weeks on 75mcg:
TSH: 1.2 (0.270 - 4.2)
Ft4: 22.0 (12-22)
FT3: 4.7 (3.1-6.8)
VitD: 134 (50-250)
Total B12: 331 (145-569)
Ferritin 37 (30-400)
Folate serum: 15.4 (8.83-60.8)
My problem is that whilst taking levo 50mcg+ my muscles tire very easily and get very weak. For example I struggle to wash my hair or do washing up because my muscles/joints burn and ache. The numbness in my arms and legs is worse. I also make involuntary movements, my arm often juts out randomly and similar happens with legs (like having your reflexes tested by tap on knee)
I also have intermittent tremors in my hands and fingers. All of this is proving hard to manage and hasn't gone away on levo, despite me giving it time and supplementing magnesium too. I feel much more tired on levo rather than the ups and downs of tiredness I felt before.
These symptoms were not an issue before levo and if I have a few days break things calm down and fade away. I've been off of levo now for around a week and the issues above have almost completely gone and I feel so much better.
Until now I've been on 50-75mcg levo since June but I don't want to keep putting up with the discomfort and disruption of the side effects above. They make me feel even worse, but not sure what my options are now? My t3 was actually higher when I wasn't taking any levo so I'm just feeling confused and frustrated?
I have been working hard to improve my vitamin levels including ferritin but this just seems to be constantly low no matter what I do? This has always been the case since I was a teenager but GP never bothered by it.
Did you take the test as recommended, leaving 24hrs between last dose of Levo & blood draw? Also stopping biotin containing supplement 3-5 days before.
Your FT3 is at 43% of the range so still a little low.
What supplement are you taking for B12 and how long before test did you stop taking it? Thats looking too low still. The symptoms that you describe may be due to low B12.
Have you had Pernicious Anaemia investigated by your GP?
How are you improving ferritin? Food or supplement? Ferritin can be notoriously slow to raise.
Vit D looks good. Well done!
Your folate is too low. What are you taking for folate? You may need to add a separate methylfolate if you are taking a good B complex already.
Yep, always follow the protocol for blood testing and stopped the B complex 7 days prior to the test.
I take the Pink tribe B Complex that was recommended here (which includes folate) and Thorne Iron bisglycinate. I've tried chicken livers/pate etc but can't stomach it at all. Trying to eat a bit more red meat generally, along with the supplements.
Pernicious anemia hasn't been mentioned to me but have had a complete blood count and quite thorough bloods that seemed fine and nothing abnormal.
I really doubt that the symptoms are down to low B12 as the involuntary movements, twitching and shaking were not an issue prior to starting levo and they fade out pretty fast when I stopped levo for a few days.
What level of B12 should I be aiming for ideally?
My last set of thyroid bloods prior to starting levo were:
TSH: 4.14
FT4: 17.6
FT3: 5.1
...so I'm starting to question if GP was way too quick to prescribe levo? (very unusual I know)
I'm wondering if it would be better to stop for 6 weeks and then see where things are at? I just can't handle the side effect
Low ferritin can cause restless legs (and arms) so those symptoms could be caused by that.
Are you taking your iron supplement with orange juice or something with vit C? It can take many months to raise ferritin so hang in there and try a different supplement if you're not getting results. Many in this group have done well with this one.
Does levo often reveal vit. defences like this? Is it common?Sorry maybe a dumb question but I've been on levo now since feb and have been working hard to improve my vitamins (with limited success!)
I am taking my iron with a vitamin C supplement. These supplements so far seem much better than the others but it seems like all iron, even gentle kind cause constipation which is annoying.
I have some Cytoplan sublingual lozenge things so I'll take those along with the b complex.
Would you recommend I stay at 75mcg? I do have an endo appointment but this isn't for a few more weeks yet and I'm just not sure I can stick it out until then.
I was thinking of switching back down to 50mcg and seeing how I go for now. For ref. my bloods after 4 weeks on 50mcg were:
TSH 3.800 (0.270 - 4.2)
fT3 4.7 (3.1 - 6.8)
(FT4) 17.6 ( 12-22)
* I know this was tested a bit too early but NHS seem to like to test too early where I am it seems! They have tested my thyroid 3 days after a dose change before....
Is it worth going back to 50mcg and giving it the full 6 weeks this time?
I have ME/CFS (its in remission at the moment) and i had a relapse 3 years ago with myclonic jerks, fatigue and tremor inside me, and I took 1000 Mcg B12 and the symptoms went away. I can't prove it was the B12 I took but I was surprised. I have been well since (even though I stopped taking B12 supplements soon after I felt well.)
I've been off of levo now for around a week and the issues above have almost completely gone and I feel so much better.
Ahhhhhh that confuses a lot of people! But, it's a well-known fact of life. Let's take it from the beginning...
- you have symptoms, and blood tests show that you are hypo.
- you start taking levo and some symptoms get better, some get worse and some new symptoms appear. That is all perfectly 'normal'. That's what happens on low doses of thyroid hormone replacement. But, you have to start low because your body has probably been struggling on low levels of thyroid hormones for a long time and needs time to adjust slowly.
- for whatever reason, at some point you stop taking your thyroid hormones - maybe you ran out or something - and, it's like magic! All your symptoms disappear! Wow! But, it is only a temporary reprive. Sooner or later (and I managed for six months!) the symptoms will come creeping - or galloping - back and you will be hypo again, only worse than you were before it all started. That is a fact of life. Nobody knows why it happens but it does. And that can apply to levo, levo + T3, T3 mon-therapy or NDT. It does not mean you're on the wrong hormone, or the wrong dose, or you were misdiagnosed or anything else. That's just the way it is.
Hypo symptoms can take a long time to go away, and it can take months, or even years, to find the right dose. But, you know you're on the right dose when the symptoms go away. So, you mustn't give up. You have to push through and keep increasing the dose slowly until you reach your 'sweet-spot' - that is if your doctor is educated enough to let you, and doesn't become spooked by a low TSH! Because the odds are, by the time you get to your 'sweet-spot', your TSH will be suppressed. You just have to train your doctor!
Hello, that does all make total sense and I’m glad I’m not alone in the confusion of stopping either!
I total get what you’re saying but I suppose I’m just confused as on 75mcg I’m right at the top of the range but my t3 levels are actually exactly the same as when I was on 50mcg. I was hoping I wouldn’t need T3 and I’m still hoping my t3 will improve if I keep working on my vitamins. I’m seeing a private endo (that was reccomended to me on here) so I’m hoping they can help me work it all out too 😬
I would say that your FT4 is a little too high, and that if you reduced your levo a little, conversion might improve - especially if you're improved your nutrient levels. Worth a try. But do it on your own, don't involve your doctor because whilst they love reducing doses, they're not so keen on putting them up again!
Thank you for replying, I definitely intend to do it on my own and then get a private test inc. T3 to see where I’m at.
I have plenty to try out a lower dose by myself so that shouldn’t be a problem. I was thinking to go back to 50 now my vitamins are a bit better and then maybe a touch higher if needed after 6-8 weeks.
There is a logical explanation for why fT3 goes lower after starting levo:
TSH ( thyroid stimulating hormone )
..when TSH is raised , it not only stimulates the thyroid to try to make more T4 .. it also stimulates it to increase the RATIO of T3 to T4 that it is producing. It's a sort of 'emergency boost' function ~ presumably to make sure there is enough T3 even if T4 is to low .
( most of our T3 is made from conversion of T4 at other sites around the body . but a small amount of 'ready made' T3 is produced by the thyroid)
when we take levo , it lowers the TSH. and this turns the emergency T3 boost off .... so the amount of T3 from your thyroid goes back to normal levels.
So logically.... if we are not too severely hypo when we start levo , there is a going to be a point at which some of us are actually worse off taking levo .. because we have turned off this emergency T3 boost... so have less T3 available .
based on this , and on the fact that your T4 levels were ok anyway .... if you feel better without levo . personally i'd stop it you can always start taking it again in future if your hypothyroidism worsens and you really do need it.
This makes sense and might explain why I’ve been feeling so crummy!
I was thinking to ween off and see how I go but worry as before I experienced these big swings in TSH which made me feel crap even though my t4 and t3 were always in mid range as a minimum. I think I might go down to 50mcg and then ask the endo in November what they suggest as I feel in such a muddle with it all!
tricky decision... listen to your gut instinct and go with that.
We are all different in how we respond to being hypo and to taking levo .. at the end of the day your personal experience is all that counts ... thyroid decisions nearly always come down to a case of 'suck it and see' .
It’s so hard because o just feel like I’m exchanging one set of symptoms for another really.
Is it worth trying T3?
I do okay off levo but my digestion issues come back pretty fast it seems
I’m gonna drop to 50 and retest in around 8 weeks. It’s just hard because many of the thyroid tests I had done before and after treatment are just Tsh and t4 which obvs doesn’t give the full picture
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