Alternative thyroid medication or anti anxiety ... - Thyroid UK

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Alternative thyroid medication or anti anxiety medication?!

underact15 profile image

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.

64 Replies

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…..

Bloods
Lalatoot profile image
Lalatoot in reply to underact15

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.

underact15 profile image
underact15 in reply to Lalatoot

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 🤔

SlowDragon profile image
SlowDragonAdministrator in reply to underact15

Magnesium should be 4 hours before levothyroxine

Suggest magnesium after evening meal

Levothyroxine at bedtime

jgelliss profile image
jgelliss in reply to Lalatoot

That's a Great way to dose. Small tweaks make a huge difference.

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.

underact15 profile image
underact15 in reply to Lalatoot

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…

Lalatoot profile image
Lalatoot in reply to underact15

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!

underact15 profile image
underact15 in reply to Lalatoot

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?!

Lalatoot profile image
Lalatoot in reply to underact15

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.

underact15 profile image
underact15 in reply to Lalatoot

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.

SlowDragon profile image
SlowDragonAdministrator

Do you always get same brand levothyroxine at each prescription

Which brand

Are you on absolutely strictly gluten free diet

And/or dairy free diet

Or tried either

Ferritin is still very low

What’s your diet like

Are you vegetarian or vegan

Folate on low side

Are you currently taking a good quality vitamin B complex?

Multivitamins are never recommended on here

Exactly what multivitamins are you currently taking

Most contain iodine not recommended for Hashimoto’s

Splitting levothyroxine dose into two can be helpful

Suggest you move magnesium dose at least 4 hours before bedtime

Hi SlowDragon thank you for your reply.

Accord brand every time.

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

SlowDragon profile image
SlowDragonAdministrator in reply to underact15

EXACTLY which multivitamin

Iron is barely increasing

You’re likely to need addition of small doses of T3 prescribed alongside levothyroxine

Possibly small reduction in levothyroxine too

Roughly where in U.K. are you

Current supplements

Current supplements
SlowDragon profile image
SlowDragonAdministrator in reply to underact15

As suspected…multivitamins contain iodine

You need to get iodine levels tested

SeasideSusie has details on best iodine test

Levothyroxine most likely contains all the iodine you need

drknews.com/iodine-and-hash...

Thank you SlowDragon I did ask her about iodine and she said that there are differing opinions but believes that we do in fact need “some” 🤷🏽‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply to underact15

Yes we need “some”

But if you eat fish and other iodine rich foods will be getting iodine in diet

There’s all the iodine you need in levothyroxine

Current supplements

Supplements

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’m in Northumberland

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.

underact15 profile image
underact15 in reply to Buddy195

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.

Buddy195 profile image
Buddy195 in reply to underact15

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.

underact15 profile image
underact15 in reply to Buddy195

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 🤔

Buddy195 profile image
Buddy195 in reply to underact15

Try the ‘additions’ of 12.5mcg first & see how you feel. Do keep posting to let us know how you get on! 😊

underact15 profile image
underact15 in reply to Buddy195

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?!

Buddy195 profile image
Buddy195 in reply to underact15

It’s all trial and error, but worth considering 👍

underact15 profile image
underact15 in reply to Buddy195

Ok, I’ll give it a go, thank you! The only difficulty will be cutting 50s into quarters but I suppose I’ll get it all over 4 days so that’s ok?!

Buddy195 profile image
Buddy195 in reply to underact15

That’s fine; just cut one pill at once and use all quarters before cutting a second pill.

underact15 profile image
underact15 in reply to Buddy195

I’ll do that, thank you!

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.

underact15 profile image
underact15 in reply to JAmanda

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.

underact15 profile image
underact15 in reply to Stubbo46

Thanks for replying Stubbo46 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.

Stubbo46 profile image
Stubbo46 in reply to underact15

I split the doses for a while and that made a difference. I took 50mg in a morning and 25 at 3 in afternoon and it seemed to ease the jitters a bit.

underact15 profile image
underact15 in reply to Stubbo46

So perhaps I don’t need to reduce the overall amount of levo but perhaps split it or spread it out more evenly?! 🤔

Stubbo46 profile image
Stubbo46 in reply to underact15

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.

underact15 profile image
underact15 in reply to Stubbo46

Thanks Stubbo46. 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.

JAmanda profile image
JAmanda in reply to underact15

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.

underact15 profile image
underact15 in reply to JAmanda

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. :)

underact15 profile image
underact15 in reply to greygoose

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

greygoose profile image
greygoose in reply to underact15

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?

underact15 profile image
underact15 in reply to greygoose

🤣 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!

greygoose profile image
greygoose in reply to underact15

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. :)

underact15 profile image
underact15 in reply to greygoose

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!!!! 😤

greygoose profile image
greygoose in reply to underact15

She misses appointments??? How very unprofessional. It's not like she's going to get called out for an emergency is it.

underact15 profile image
underact15 in reply to greygoose

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.

Sending you Positive and Healing hugs.

underact15 profile image
underact15 in reply to jgelliss

Thank you, that’s very kind 🥰

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 💙

SlowDragon profile image
SlowDragonAdministrator in reply to underact15

Are you going to split the 112mcg levothyroxine dose into 2 ?

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?! 🤷🏽‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply to underact15

Yes …..Only make one change at a time

So trying 112.5mcg daily

Retest after 6-8 weeks

Perhaps next change…if necessary….move single dose to bedtime

Can give better results and be more convenient

If necessary…..after that try splitting dose in two

Ok, I’ll follow that plan, thank you. Might as well see if I can make levo work on it’s own while I’m trying to find someone who will give me T3!

Latest iron and ferritin results :

Serum iron 16.9 (5.83 - 34.5)

Ferritin 38.59 (13 - 150)

Do you have any results for

TIBC (Total Iron Binding Capacity)?

Transferrin Saturation?

CRP or CRP-hs?

Haemoglobin?

MCV (Mean Cell Volume)?

underact15 profile image
underact15 in reply to humanbean

Hi humanbean no they didn’t do a full iron panel in July but they did in April and it was all ok - apparently! I’ll double check

underact15 profile image
underact15 in reply to humanbean

I’m presuming that’s what that lot is - full iron panel? What’s CRP?

humanbean profile image
humanbean in reply to underact15

A full iron panel would include :

Serum iron

Ferritin

TIBC

Transferrin Saturation Percentage

and it helps if CRP is included too.

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

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