Further to my last post, I’m still at a bit of a loss. My endocrinologist says that my thyroid situation is as good as it’s going to get and has referred me to a neurologist (on account of feeling like I’m walking on a boat, dizzy, light headed etc) and a haematologist (on account of low ferritin). I will follow up the referrals but something tells me it’s potentially not what I need…
I have a lot of symptoms (fatigue, brain fog, spaced out, headaches etc) but the one I’m struggling with most is this horrible walking on a boat/dizzy/light headed/jelly legs feeling. I think it might actually be a physical symptom of anxiety as it does get worse in certain situations; I seem to go into fight or flight incredibly easily and far too often! It’s making day to day life pretty unbearable. Unless it’s a coincidence, it’s almost certainly become worse since trying to increase my levothyroxine dose. I just can’t seem to tolerate it.
So my question is - do I keep pursuing it as a thyroid problem and hope that adding in T3 (which my endocrinologist wouldn’t give me because she thinks I’ll feel worse) or switching to NDT will help or do I give in and try anti anxiety medication/antidepressants?! Instinct tells me the former but the GPs and endocrinologists have been so unhelpful that I’m really not sure I’ve got the fight in me anymore.
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Most recent bloods. I was first referred to an endocrinologist in Dec 2020. I had been on 100mcg levothyroxine for a couple of years. I increased to 125mcg in Feb 2021 and felt completely wired. That’s when the walking on a boat/jelly legs/dizziness/anxiety/whatever it is(!!!) really kicked in. I went down to x3 days 125mcg and x4 days 100mcg in April and have been feeling a tiny bit more stable than when I was on 125mcg every day but still awful. The only positive is that my period returned to normal (for the first time in a year!) when I was on 125mcg every day. Unless it’s a coincidence, the rest of me can’t seem to tolerate it! The month after I reduced to alternating 125&100, my period went weird again. That tells me that I probably do need more thyroxine but I just can’t seem to tolerate it! Why is that?! Adrenal problems?! Unless it’s all a coincidence that is…..
When I was on levo only I couldn't tolerate a full dose in on go. The endo advised me to split my dose and I was able to build it up that way. I take it first thing and bedtime.
Thank you, I might give that a try! So on a 100 day, I could take 50 in the morning and 50 at bedtime and on a 125 day, I could take 75 in the morning and 50 at bedtime - something like that?! And I obviously have to make sure it’s all taken away from food and supplements. Is levo ok with magnesium glycinate? I take that at bedtime 🤔
Everything needs to be 2 hours away from levo (vit D supplements 4 hours away) so not with magnesium.How about a dose at 4pm? So as you say but on waking and then afternoon an hour away from food or cups of tea.
The good thing about splitting a dose is that if one day you have to eat too close to a dose then you've not compromised all of your daily intake of levo.
Yes that’s a good point! The only problem is that we have a family meal at 5/6pm (young children, saving cooking twice!). I could do levo at 8pm and magnesium at 10pm?! 🤷🏽♀️
I’ve just read your profile and post about giving up on levo, thank you for sharing! Interesting re.anxiety and panic attacks - since Feb, I’ve also been wondering if levo is poison!!!! I do wonder if it’s all related to low T3 though….it was only 3.5 last time (last month) - range 3.1-6.8 - which is only 10% or something pathetic like that!? My endocrinologist is adamant that adding in T3 will just add to the anxiety and panic though…
I struggled on levo alone. Taken me 2 years to adjust doses of levo and lio T3 to get to where I am beginning to feel me again. Adding T3 is not easy or quick!
That’s encouraging, thank you. Did adding in lio help your feelings of anxiety and panic attacks? My endocrinologist really is adamant that adding lio to levo will make those feelings worse for me but maybe I need to speak to another endocrinologist who’s willing to let me give it a go?!
Yes. I was on citalopram for years but came off that 2 years ago.Your vitamins need to be optimal first though to give the levo/lio the best chance of working. So I would start by supplementing as Slow Dragon suggests. Multi vitamins not recommended as on element of the multi can block the action of others. There are a lot of posts on here explaining why we need to target certain vitamins rather than a multi.
Thank you Lalatoot . I’m sorry you’ve been through the anxiety and panic thing too; I find it the most unbearable symptom for sure. I will persevere with trying to find T3 (or NDT!?) before going down the anti anxiety medication route. Here’s hoping the next endocrinologist I speak to will let me try!
I’m really working on my vitamin levels and have been trusting my functional medicine practitioner with regards to which supplements I take. I read lots on here about multis so I put it all to her but she was having none of it so I thought I’d give her the benefit of the doubt. Perhaps it’s now time for a change. The multis do seem to be helping my vitD and B12 levels but ferritin and folate still aren’t great.
Strictly gluten free since March 2021, restricting dairy, sugar and soy.
Balanced diet, as “clean” as possible, not vegetarian or vegan. Meat and/or fish every day.
Taking a multivitamin on advice of my functional medicine practitioner who I’m still giving a go! Hoping she’ll switch me to a b complex soon…….!! Also taking selenium, Ferrochel, magnesium glycinate and probiotics
Yes my endocrinologist said that ferritin should be higher given that I’ve been on Ferrous Fumarate or Ferrochel since last July. That’s why she has referred me to a haematologist. Isn’t it just because I have heavy periods though?! Which is potentially a thyroid problem?! Vicious cycle!
I have suffered with terrible anxiety & this greatly improved when my thyroid medication was optimal. I need to take things very slowly however & only increase in increments of 12.5 mcg Levothyroxine (leaving 6 weeks or more between increases).
Getting ferritin, folate, B 12 and D3 optimal also greatly reduced my anxiety. I would recommend getting these tested and then post results on the forum for further advice re supplementing.
Hi Buddy195 thank you for your reply and I’m sorry to hear that you’ve struggled too. When I increased to 125 (having been on 100 for years), I took it for 6wks before re-testing (I felt I couldn’t manage any longer!) and I’ve been on 100/125 since April. The horrible anxiety and panic make me feel like I need less but my bloods (and periods!) show that I need more. I’m really not sure what to try next with regards to levo dose.
My results are above - one photo in the post and one in the comments. I’ve been supplementing since December 2020.
When adjusting Levothyroxine doses, my anxiety was so much worse. For me, I added 12.5mcg alternate days to my existing dose (as I could tolerate this small increase). After a couple of months I added the 12.5mcg 5 times a week, then progressed slowly to taking it daily. There are members who, like me, need to adjust super slowly….more like a tortoise, than a hare.
I think I must be a sensitive tortoise 🤣 Does weight have anything to do with it?! I’ve always been very petite and borderline underweight (5’6”, 50kg). I’m wonder what I should do - maybe I should try 12.5mcg addictions instead of 25mcg 🤔
Oh dear, I’ve just seen my typos 🤣🤦🏽♀️ Sorry about that! “additions”, yes!!! So at the moment I’m taking a total of 775 a week (x4 100 and x3 125) but x7 112.5 is 787.5 so a higher total. Maybe it’ll work out though?!
On your most recent test your tsh was 3.9 and your doc thought that was optimal?
Your options are to complain about the doc, move docs or go private, or start self sourcing meds… because you simply need a dose increase.
Often I’ve found it hard to take increases but I think it’s just your body getting used to it, and after a couple of weeks i start to feel better. I’d persevere.
You’ll feel a lot better when your tsh is likely under 1 and your T3 and t4 are higher in the range.
I got better by simply increasing my meds unilaterally then telling the doc what I’d find the next time I saw them - by then I could say well I feel a bit better.
Yes all those symptoms are signs of under medication.
Hi JAmanda thank you for your reply. Sorry, I added my most recent results in the comments section - I couldn’t work out how to add more than one photo to my post! She wasn’t happy with TSH 3.9 so upped me to 125 every day which made my TSH went down to 0.74. I felt worse though - apart from my period returning almost to normal! 🎉 I then went down to 100/125 alternating and that’s what I’m still doing (since April) but I’m still feeling horrendous
I was the same when increasing my dose from only 50 to 75. I was waking up early nervous as hell . Doing stupid things all day because I was in a daze all the time and having anxiety attacks . Considering I was was one of the most laid back people I knew (maybe too laid back) this was definitely new to me. It's started getting better although still have the occasional day of brain fog and stupidity but the doctor sending me for blood tests for vitamin , iron levels and thyroid levels . I was contemplating giving the levothyroxine up it was that bad but after reading similar experiences and hearing people say it's just a phase you got to get through kept with it. Only just recently after 6 month of taking the levothyroxine have I started slightly seeing any benefits. Also could be the fact I've started cutting out gluten something slow dragon did suggest a while ago.
Thanks for replying BlueKeith and I’m sorry you’ve been struggling too, it’s horrible! I’ve now been on the same dose (100/125) since April and I don’t feel any better. I don’t know how much longer to give it. I felt crap on 100 only (albeit a different crap!) and then the anxiety/panic really kicked in when I went up to 125 every day. I then went down to 100/125 but it’s been months now and I don’t feel any better at all really. I’m not sure whether to go up or down with levo, pursue T3 or just take anti anxiety meds!
I’ve been testing and supplementing vitamins since December.
It's worth a try. It worked for me. I take both together now. Don't have any side effects now but definitely did to start off with. It was unbearable. Hope it gets better for you.
Thanks BlueKeith . I thought I would be tolerating it better after 4 months on the same dose but clearly not! I think I’m going to take Buddy’s advice and go down (or up, actually!) to 112.5mcg every day. Worth a shot! Splitting it is tricky because of supplements and meal times - I don’t think I can fit it in!
During 20+ years of Levothyroxine mono-therapy, I had overwhelming anxiety, panic attacks and eventually agoraphobia, because I was scared I'd get lost (again) or not remember where I'd parked the car (again). Your T3 wasn't high when compared to your T4 in last years test. This year it seems it wasn't tested at all (?) and your T4 is slightly lower, while TSH has increased! Without benefit of testing your T3, is your doctor some kind of super psychic or worse, just assuming that you don't need it?!
Hello! Thank you for your reply. Anxiety, panic attacks and agoraphobia is me - if that’s what this jelly legs/dizziness etc etc etc is! I seem to have zero control over it, I just get hit with horrid physical symptoms and then the anxious thoughts kick in. Worst symptom ever 😢
Sorry, my results probably aren’t that clear on here. My T3 wasn’t tested 2015-2020 but when I finally started seeing an endocrinologist in Dec 2020, she tested T3 every time (although once she did TT3 instead of FT3 🙄). I last had bloods done in July 2021 - my FT3 was a pitiful 3.5 then (range 3.1-6.8).
I actually felt like a zombie when I had almost same blood results as you. Going on NDT helped me A LOT! And I mean a world of a difference in wellbeing, energy. Before when I was on levo I was almost bedridden. Now I'm at the top of the range for T3, lower range for T4 and anxiety actually calmed down for me weirdly. I felt even extra better when I started supplementing not just Iron and vit D, but also Magnesium and Zinc.
Wow that’s so positive, thank you! I wouldn’t say I’m a zombie but I do get extremely tired and I sometimes wonder if I’m only keeping going because I have no choice (I’m a full time Mum to two young boys). I think if I sat/lay down more then I’d probably feel like a zombie if that makes any sense!
I also wonder if the hideous anxiety and panic is coming from low T3 and higher end T4. I’m not sure. I’ve been supplementing since Dec and do feel like some symptoms are better (headaches for example) but not much change really.
You really do need more meds… you won’t get ndt but you might get T3 on nhs. Do have a go. Your focus needs to be on getting your T3 up. And then you’ll feel so much better. I found when my body responded to changes in meds it’s because my body wanted more not less. And when I took more it tolerated it better.
Thanks JAmanda I think you’re right, I will persevere! I’ve now started 112.5mcg every morning so that’s a teeny increase. I’ll continue the T3 hunt too! 😭🤞🏽💪🏽
I could do levo at 8pm and magnesium at 10pm?! 🤷🏽♀️
Magnesium needs to be taken at least 4 hours away from levo. So, no, that wouldn't work.
Taking a multivitamin on advice of my functional medicine practitioner who I’m still giving a go!
Never, never take nutritional advice from a doctor. They do not study nutrition in med school and know no more about it than the average person. There is no such thing as a 'good' multi-vitamin - especially not if it also contains minerals - for many, many reasons - I can elaborate if you wish.
Hi greygoose , thank you for replying. I know, we’ve spoken about multivitamins before and I did take all of the info to her but she argued against it. I do hope I can persuade her again, hopefully very soon!! She’s a nutritionist and functional medicine practitioner, not a doctor. She advises me about diet and supplements
I do hope I can persuade her again, hopefully very soon!!
I'm sorry, I don't understand that. Doesn't matter what she thinks, if you believe that multi-vits are a bad idea, you just stop taking it. You don't need her permission. You don't have to persuade her of anything, you just do what you think best.
But, personally, I wouldn't put my trust in someon who recommends multi-vits to over-see the rest of my nutrition. What else is she getting wrong???
Just out of curiosity, what were her arguements in favour of a multi-vit? Has she got shares in the company, or something? Does she sell them herself?
🤣 I have actually wondered if she gets a % from the company, she probably does!
I know what you mean but I thought it would be a good idea to work with someone in the functional medicine/nutrition world with regards to supplements, rather than just doing it by myself. This is all still quite new to me and I don’t think I’ve got that confidence yet. Knowing who to listen to and trust is difficult!
Was it you I said to the other day: I have the same opinion of nutritionist as I do of multi-vits? My short-term memory isn't very good! lol I've seen several nutritionists, and a couple of dieticians, and I've been totally under-whelmed. One dietician thought that being vegetarian meant you didn't eat beef. Nutritionists usually want you to consume soy... I could go on, but I won't. Just be wary, and double check everything she says.
No I don’t think that was me 🤣 I’m very wary - perhaps too wary - of everything! I really struggle to know what and who to trust. She agrees that I shouldn’t have soy but has said a little bit won’t hurt 😳 I’m considering doing the DUTCH test through her to see what my adrenals are up to and then I’ll likely say goodbye to her. It’s her poor communication and missed appointments that get to me the most!!!! 😤
Incredibly unprofessional. She double booked me once and forgot about another. She takes days (sometimes weeks!) to reply to emails as well. Typing this out makes me realise how bad it is! Once I’ve done the DUTCH, that’s it.
Strength and Sympathy. Please stay strong and Positive. If your Dr does not want to work with you on getting you to feel as best as possible. Then it's time for you to move on. I don't know where you are located but the wonderful kind members of this Great Forum will be so happy to help you get to the right source.
Thank you all so much for taking the time to reply to me, I really appreciate it. It’s given me the strength to keep treating it all as a Hashimoto’s problem although I think I will get the DUTCH test done to see what my adrenals are up to.
I’m going to take 112.5mcg of levo every day from today and see how that goes….🤞🏽
I’ll continue to work on ferritin and I’ll switch from a multi to a b complex with folate but I’m not sure what to do next re.T3 (or NDT!?). My GP won’t test or prescribe it and my endocrinologist (despite being on the thyroid uk list) absolutely won’t prescribe it because she thinks I’ll feel even more dizzy/anxious/panicky. Should I self refer to another endocrinologist? Is that possible?! A couple of people have recommended Dr Frey of Country Health?
greygoose SlowDragon Buddy195 Lalatoot and everyone else - any pointers? Thank you again in advance 💙
I’m not sure 🤔 I might try 112.5 every day first thing to begin with. I’ve never split a dose before, I’ve always taken it as soon as I wake up, and apparently consistency (with regards to when it’s taken) is important?! 🤷🏽♀️
CRP is an inflammation marker. If it is raised it means the patient has inflammation somewhere in the body. Unfortunately, it won't tell you where. CRP also might give you information on what a ferritin result is telling you. Ferritin is raised when inflammation levels are high. (Although ferritin can be raised for other reasons too.)
Note CRP and CRP-hs (high sensitivity) tell you the same thing, so either will do.
MCV is part of a Full Blood Count and may be informative about iron/ferritin/B12/folate in some circumstances.
Haemoglobin is also part of a Full Blood Count and low levels occur in anaemic patients.
Hi, sorry to hear you’re having a rough time with anxiety on top of other symptoms. Not easy. I was recommended “aswagandha” while my hypo symptoms were really bad & I was waiting for appointments & tests etc. I take citalopram already, but this is meant to help with anxiety & is just a kind of supplement. It seemed to help with the anxious feelings. I have now just started T3 (& dropped 125 levo to 100) and feeling slightly more positive (although only a few weeks in). So will drop the “ashwagandha” soon, although I don’t want to have too many changes at once
I hope you find what works for you & manage to be symptom free soon x
I read your post and reply’s with interest as I have very similar to you. Fatigue, headache, walking on mattress etc but the worst symptom is anxiety and edgy feelings. I have been on 50 mcg of Levo for over 5 years. Because my TSH is in range my endo said no need to increase. My medichecks T3 same as yours and T4 mid range. I am currently raising my Levo by 12.5 mcg per week which I know is pathetic but my anxiety makes me too scared to go any higher for now. I know it’s a year on but I would love to know if you have had any joy with your increase or have you tried T3? Did you try dose splitting? It really is dreadful to feel that way
I do hope you have found the sweet spot as I know how debilitating anxiety is.
Hi Summerlove, thanks for your message. I can’t believe it’s a year ago! It’s been quite the rollercoaster! I’m sorry to hear that you’ve been struggling, I know all too well how awful it is 😢
I gave up with my endo - she, and her ridiculously awful secretary were just no use. She refused to let me try T3 and that was that. I settled on 112.5 daily levo for a while (having tried 125 daily and then 100/125 alternating) which was ok but then felt extra jelly legs etc so decided to go back down to 100 and I’ve been on that for a few months now - so I’m back to where I started!
However! I have been persevering with my functional doctor/nutritionist and think I might (touch wood, touch alllllll the wood!) finally be starting to feel a bit more normal! I was beginning to think that it would never happen and I can barely even bring myself to say it because I’m scared of jinxing myself!!! I have done all sorts of tests with her but the one that came back hugely abnormal was my adrenals….massive adrenal fatigue! Apparently that goes hand in hand with Hashimoto’s and can cause all sorts of nasty anxiety symptoms. As a result, I have been taking adrenal glandulars (as well as vit D, B vits and iron) for a few months now and I think they might finally be starting to have an impact….unless it’s a coincidence!!! I most definitely feel much more grounded and normal though, it’s amazing! Still nowhere near totally normal but better. I will take that for now! I’m also going to get back into CBT. I still don’t feel like anti anxiety meds are the way forward for me, it’s never felt like the “right” thing to do and I’m determined to stick to that until I’m absolutely sure!!
So I guess my advice is - maybe check out other things?! Iron and other vitamin and mineral levels, gut test, adrenals test etc etc?! I do feel like 50 is a low levo dose but we’re all very different - one of the GPs got so fed up with me asking for advice that he just told me to experiment for myself and go up and down as I feel is right! I do feel like looking at my body as a whole makes sense - it’s all connected after all.
Ah thank you for reply. I am pleased you seem to be getting better. I will take on board your suggestions especially optimising folate which is always low for me. Unfortunately I have tried methyfolate and felt great for a week or so then I became agitated etc. it is well documented that this can happen. I even left it a while and tried again cutting the pill down to almost crumbs but same symptoms occurred. I do try to eat folate rich foods but then worry as there is a lot of iodine in the green leafy vegetables we can’t win.
It’s a constant battle to feel well I find but these forums are so helpful in our journey
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