Went up to 100mcg levo 4 weeks ago. (After 5 weeks on 50 where i felt some improvement for a month but with a gradual decline). I felt a small improvement on 100mcg for about a week but now I feel awful again and worse each day - feel so ill today (like i have flu) and cant get out of bed. I don't want to wait another two weeks like this to do my test. Will it matter if I do it a week early? What I’m hoping is that the test will show I just need an increase. 🙏. I’m due a vitamin retest but I've been taking all the ones suggested on here. (I’ve been completely gluten-free for only about ten days). Thanks in advance
Do I have to wait 6 weeks between thyroid bloods? - Thyroid UK
Do I have to wait 6 weeks between thyroid bloods?
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msmono
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You say that, "feel so ill today (like i have flu)",...it seems you have symptoms of overdosing. Maybe 100mcg is too much for you.
I don't think that five or six weeks will make that much of a difference...but why did you raise levo from 50 to 100 mcg in one go? Normally, you raise it by 25 mcg at a time so you should probably have been on 75 mcg right now. By adding 50 mcg in one go, you risk missing your sweet spot and end up on too much.
msmono• in reply to
Hi, thanks for your reply, the endo looked at my last bloods and said there wasn't enough improvement and to go straight to 100. I didn't have increased heartbeat, sleeplessness and feeling a bit 'wired' which I had when first on levo. Also my bones ache like hell, I've got frozen hands and I'm sleeping like I'm completely unconscious (so I can't actualluy move when I first wake up) which are usually hypo signs for me. I guess I could try reducing it but stupid pharmacy have given me a brand I can't split (instead of the one I requested).
• in reply tomsmono
But, are you feeling worse now than you did on 50 mcg daily...more hypo, that is?
msmono• in reply to
Hi, well for my first 3-4 weeks ever on levo i.e. 50mcg, I felt like I was getting my life back, (if a bit wired the first week). Then I started to go downhill and back to same symptoms and when I did my re-test at 6 weeks it showed slight (25%) reduction of TSH and slight raise (10%) of free T4 but slight reduction of T3. The first week of 100mcg, I showed some improvement but this has gradually declined and back to symptoms. It's certainly worth re-considering dose. I think the endo thought there was so little improvement that it was ok to go straight to 100. So much to learn and with so little brain-power and energy!
• in reply tomsmono
What you experienced while on 50 mcg, that is, initial improvement and then feeling worse, is normal. That's the negative feedback loop - your body senses the extra thyroid hormone and decreases your own hormone production even further. That's why you need to be retested after six about six weeks and raise your dose if needed.
It certainly does not sound as if you are overmedicated but rather that your hypo symptoms have got worse since raising levo to 100 mcg daily. I wonder if adding 50 mcg in one go decreased your own hormone production enough to cause these symptoms...I hope someone else can chime in as I am not sure I can explain it.
msmono• in reply to
Hi, thanks again for responding. Yes I did wonder if there were ups and downs as the thyroid (and indeed the whole body), gets used to the sudden influx (in this cae quite a jolt) of medication. It does reassure me to remember that this is going on in the background. Just persevere I suppose and see what the bloods say. If I need a little bit more I'll be sure to go up by 25 first whatever the endo says! Thank you again 
• in reply tomsmono
Sorry if I've missed this, but have you been diagnosed with Hashimoto's?
msmono• in reply to
Yes - in June this year by a private endo after G.P. said 'come back a year'. I'm going to do my test on Monday and also see about going back to Actavis levo which I had for my first script and I think might agree with me better. Then I'll see what the FreeT 3/4 results show. If you go on weight than I shouldn't need more than 90mcg anyway.
jgelliss• in reply to
In fact I would suggest too to add on to your Great Suggestions already would be if 75 mcg T4 did /does not feel enough going to 88mcg T4 before going to 100mcg T4 would be still a better dose to try not to over shoot your *Optimal*. You must give enough time for your body to acclimate to new dose changes . Low and slow is the best way to go .
Good idea. I don't think the 50 was enough in the beginning though as I only had a month of feeling good (bliss though it was) and then started to decline quite fast. I'm thinking that there could be an issue in how my bodies reacting to a different brand.
OK, so having read your responses to others, it seems to me that at this point in the game, only leaving 5 weeks wouldn't make that much difference. But the more you go up, the longer you need to leave it to really get the benefit of the increase. Also, the more you go up in dose, the smaller the increases should be. So, no more jumping up by 50. I can understand why your endo did that, but it was taking a risk, and you could have reacted badly to it and had to go down again.
So, get tested at five weeks, and get a print-out of your results, so that you know exactly where you are. Increase by 25 mcg and stay on 125 mcg for the next six weeks, and you should be back on track. But, slow and steady wins the race where hypo is concerned. Cutting corners is not advisable because you could find yourself right back at the beginning again.
Thank you so much. My endo is a bit excited and enthusiastic and I will bear that in mind when following his advice. Steady as she goes it is.
How wonderful to have an excited and enthusiastic endo! You are lucky. That's so much better than the bored, miserable creatures I've seen.
Lol, he’s not that interested in looking at anti-bodies - didn't think there was any point looking at root cause before starting levo and should i need t3 (fingers x’d not) I'm not sure if he’s very up for looking at that but i could be wrong. He’s consultation fees are also fair (as much as you can call private ‘fair’) and he’s followed up really quickly with letters to my G.P. and a phone call at no extra charge. Plus his medical secretary is excellent too.
Well, to be fair, there's not much he can do about antibodies, anyway. So, why would he be interested in them?
Right, i think i’ve got myself confused there as I initially thought (read somewhere) that if you could lower your anti-bodies, thus stopping the Thyroid attack, you might not (depending on the state of your Thyroid), need levo. Seriously, I’ve read so much (some if it way beyond my laypersons understanding) that Ive probably got the wrong end of the stick.🙄
There's no proof that you can lower antibodies. But, even if you did, you would still have Hashi's. One in six people with Hashi's never even have high levels of antibodies. But, everybody has some, so doubtful you'd be able to get rid of them completely.
And, if you've already had to start taking levo because your thyroid has already been damaged to an extent that it can't make enough hormone on its own, then the chances of you being able to come off levo are pretty slim. The thyroid does not regenerate.
However, as you say, you can read so many conflicting opinions, it's difficult to know what is right and what is wrong. I'm just telling you the summary of all I've read - on both sides - and what seems to be logically true. I've read a lot of posts on a lot of forums in my time, and I've seen so many people claiming to have reduced their antibodies, 'cured' their Hashi's, and come off levo. At some point or other, they come back saying they've had to go back onto levo because their Hashi's wasn't 'cured' after all. Hashi's can go into remission during the swing from 'hyper' back down to hypo, and you can be euthyroid for quite a time. And some people take this as a sign that the Hashi's has gone. But, to my knowledge, it never does. Sorry.
No thats ok, I've already cried and got over the ‘this is forever’ possibility. I also worry that something nasty is causing the anti-bodies. My mum was really sick (myeloma) and didn't know and died very suddenly. Her consultant told me the undiagnosed auto-immune disease had contributed to bone-marrow damage but i don't want to dive too far down that rabbit hole 😂 Im keeping an eye on my platelets anyway though.
Each auto-immune disease has it's own type of antibodies, and they each have a name. Your antibodies are TPOab, and they are for Hashi's. So, it's Hashi's causing those antibodies, nothing else. If you're worried about having other autoimmune diseases - which is not unreasonable - you should ask for the relevant antibodies to be tested.
Oh dear this has gone a bit chicken-egg for me. Bear with me - i thought the anti-bodies caused the hashis... So if the hashis causes the anti-bodies and anti-bodies attack the thyroid, what causes the hashis? Or is that the unknown part?
lol Yes. But no. The Hashi's causes the antibodies. Whether or not the antibodies actually attack the thyroid is a matter of discussion. Some say yes, some say no. What causes the Hashi's is also up for discussion. Some say it's to do with leaky gut and gluten, but it can be for many reasons, in my opinion. Like endocrine disrupters. It's well-known that excess iodine can also trigger Hashi's. But, what exactly caused it in you - or me - is something we're unlikely to find out.
Thank you for your patience - i think I'm getting there! 😳 i am Hugely joined to the sea and used to take large amounts of kelp tablets so maybe i got iodine poisoning! 😂
I wouldn't exactly call it 'poisoning', but taking kelp tablets is not recommended for anyone. It could have caused your Hashi's, yes.
Oh dear i was actually joking. I used to take LOADS of kelp because my mum had a auto-immune hypothyroidism and i thought i could prevent having the same.
I'm afraid not. Just the opposite. No-one should ever take iodine unless they have been tested and found to be deficient. And, even then, they need to be followed by an experienced practitioner. It's not something to play with. Excess can lead to all sorts of horrible problems, and it's actually anti-thyroid - it used to be used to treat those with Grave's, before the anti-thyroid drugs were developed.
• in reply togreygoose
What worries me in this context is that so many multivitamins contain iodine for "optimal thyroid function"...it's almost impossible to find any brand not containing iodine. I no longer take multivits for other reasons (it seems they rarely contain enough of anything) but I remember that, when I did, I would almost always end up with symptoms of a strep throat...the symptoms would go away within a few days after going off the supplements which of course, invariably, contained 100% or even more (150%) of the recommended daily intake of iodine.
greygoose• in reply to
There are all sorts of reason not to take multis. They are very bad things to take. And you're right, it is not a static disease. We need to be constantly vigilant for change.
• in reply togreygoose
So true:-))
I've been reading the article on anti-bodies you posted a link to on another thread. It was interesting to see that inflammation is the enemy and that certain foods/other elements can cause inflammation. This fully makes sense to me as I've known a long time that inflammation is root cause to so many ailments. The only issue for me is that when I started to delve into some of the dietary stuff from other links on here (Amy Myers for example) and her advocating 'no gluten, no grains, no legumes', I fell a bit into despair. As a vegetarian it starts to leave very little to eat! OTOH I'm so grateful you've highlighted the Iodine as I've just noticed it's in one of the expensive liquid supplements I treated myself too when I was newly diagnosed which I thought was just iron but turns out to be Iron with a-million-other-things-including-Iodine-in-very-small-print!
I've never red Amy Myers, but I know what you mean about that despair! My diet is pretty limited because I don't like food very much - there's only a few things I'm interested in eating. And, if people tell me I have to give those up, I get pretty miffed. That said, I have tried. I've tried gluten-free, dairy-free, sugar-free and soy-free, and the only thing that made me feel better was avoiding soy. So, I went back to eating the other things, and didn't feel any worse, so continued eating them. I don't believe in just cutting out stuff 'in case' - which is what is often suggested. If not eating it doesn't improve my condition, then I go back to eating it.
You have tried really hard - interesting that you don't like food much. I had a colleague like that - I'm the opposite so I find it quite fascinating. I think you're absolutely right about how to approach the food. I'm doing gluten-free now but no change to the very loose stools every day even when I went three weeks GF before. I have to say I've eaten copious amounts of soya over the years due to being vegetarian and a bit lazy (lots of processed GM soya). I'm pretty much low sugar-anyway because I get hypoglycaemia. Please don't let it be dairy - I LOVE cheese and butter! How do you find eating out?
I leave what I don't like on my plate. lol I only eat meat when I eat out. I don't cook meat for myself. And, I can only eat veggies when I cook them in a certain way (certainly not the way my mother used to cook them! ugh!). And I don't like many veggies, anyway. My daughter despairs of me. She does a lot of mixed salades, but I'm fussy what goes in them, and tend to pick bits out - she hates it! The french love salades based on cold potatoes, cold pasta and cold rice. I hate them all. I actually don't like French cooking much at all. I tell people, leave me alone. I don't need much food, anyway, and I'll always find something to eat, even if it's only the bread and cheese. lol
But, I love butter - and cream! Everything's better with butter and cream. So, I'm glad I didn't have to give up dairy. Whereas soy, I don't miss at all - ghastly stuff! Although it would be nice if I could still tolerate soy sauce…
Soy sauce - yum! Some people say tofu is ok too or is that tempeh as its not GM. Thats a bit unlucky re the fresh veg but, well if you're ok then fair play! You do sound exactly like my friend/colleague - he would say stuff like ‘leave me alone I’m ok’. Ive got dinner with the ma-in-law soon. Shes a bit, lets say ‘traditional’ and will probably see my GF trial as a load of nonsense! Yeah butter and cream forever - d’accord. I made some runner bean soup last week, by the time it had been laced with butter and wind, you could barely taste the beans!
I tried tofu once - but only once! Ugh! I don't know about GM but the difference between tofu and tempeh is that tempeh is fermented and Tofu isn't. Fermented is supposed to be ok, but who knows. It all makes me ill.
• in reply togreygoose
Another worrying aspect about this is that so many patients and even some thyroid advocates claim you can cure Hashimoto's...I have never paid much attention to such claims as I was told from the very beginning treatment would be life-long once you've developed full-blown Hashimoto's, but there still are quite a few people out there claiming you can reverse and even cure this condition...
I've been doing a lot of thinking over the years, especially since my own hormone needs have turned out not to be static but instead to vary quite a lot over time. So I know from my own personal experience that someone can start their thyroid journey feeling fine on T4 only, then need to switch to T3+T4 or NDT at a later stage, and even end up needing T3 only...so thyroid hormone needs are not static, but vary throughout our lives. I have come to believe (since being diagnosed with Hashi's almost 20 years ago) that is the reason we don't always feel good on the specific drug(s) we're currently taking, and not because we really don't need to be on thyroid meds at all. I know this is NOT what the OP was trying to say, so sorry about sidetracking your post, this just came to me as I was re-reading Greygoose's reply...very accurate as always!
msmono• in reply to
I think that's very true - even my great endo didn't explain properly what would happen and I operated under the misapprehension that I could get better and come off the meds! It was only the great support and help on here that has put me right, all given very patiently and often repeated because I'd forgotten or got the wrong end of the stick. It's very interesting to read something of your journey as it reminds me too that we may not always feel well just because we're on the meds because the human body is an infinitely complex system which varies from day to day.
• in reply tomsmono
You're really lucky to have an endo like that, considering how many end up miserable from being under medicated by their doctors for years...best of luck and hope you will feel better soon!
msmono• in reply to
Well I can thank this place and a little bit of google for finding him. Shame he no longer does NHS - i wonder why he left.
• in reply tomsmono
Maybe because the NHS expects doctors to treat the TSH only, and not symptoms...?
msmono• in reply to
Yeah it must be frustrating. When he wrote to my g.p he asked for ‘TSH, T4 and if possible T3 and anti-bodies’. Note the ‘if possible’.
• in reply tomsmono
Yes, I know...several doctors have told me over the years antibodies are not relevant as the treatment is the same regardless of the cause...sigh. And they dismiss the truly active hormone, T3, as irrelevant as they assume everyone is capable of converting enough T4 to T3...
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