i have posted a few times, last time was before i was due to take the thyroxine. well about 4 weeks on i feel like im dying, thats no exageration. i dont know what to dpo. i am breathless, exhausted, irritable, more hariloss, hair texture changes and terrible snapping/breaking, headaches, palpitations, constant sweating, limb aching and heaviness, spotty skin, chest tightness and pain, insomnia and anxiety, mixed with constipation, extreme hunger and weight gain, and general feeling of being unwell. i have eds and pots syndrome, and am on various meds, beta blockers is one of them.
gp started me on 100mcg levothryoxine, the first week and a half ish my eczema id had for ages dissapeared, my skin felt supple, smooth and clear, i felt slightly more energetic, then the symptoms above started creeping in, i am now covered with facial acne, and the smoothness turned to oiliness mixed with returning eczema. my stomach is so fat and swollen, and my legs/arms face are fat and swollen im in extreme amounts of pain. my menstrual cycle was delayed too with extra difficult symptoms.
i ache all over i cant stop crying, and feel almost nuts. please can someone help. gp tested blood recently due to symptoms and i didnt get them done till 11.30 as it was done at a drop in and there was a huge wait, but they came back at 1.27 tsh and 14.9 t4, she said they were perfect and to continue or stop whatever, so ive tried doing 100mcg one day and 50 the next or 100 then none the next day and those days it is less i feel i am dying more but without the wiredness. my pelvic pain is iincreasing, and i just dont know what to do anymore. i feel like iof i stay on this stuff it will kill me, but how do i come off it. someone mentioned on here i needed b12 as mine is 363 but what dose? would the above reasons be good enough ones to get gp to prescribe armour? if not can i get it without prescription or t3 alone? where can i get it? please someone help me, i have a small child and am a single parent i just dont know wha\t to do. i feel like this thyroxine is poisoning me. all measurements ive stated for blood results are uk measurements.
tia x
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I'm so sorry you're so unwell. Do you have the ranges for your test results? Your t4 seems low and although your tsh isn't terrible, some people feel awful with that result.
There's more than one way to go. You could try more levo to see how you feel when your dose is high enough. I think you may be undermedicated. You really should be allowed to get your tsh below 1 for a period of time to see how you feel. You are of course entitled to say enough is enough and decide levo isn't for you. A number of people here say they feel like it was poisoning them. I felt like you feel before I added some t3 to my levo, so for me it is having the t3 in there as well which makes me feel better.
I only suggest a higher dose because levo is easier to get and makes it easier to keep your gp onside.
Also I think you need to see where your t3 is. If your gp won't do it you can get it done privately. Low t3 can leave you feeling very depressed and exhausted.
I know it feels awful right now but it's just a matter of pulling the threads apart and once you try some things that help your feel a little better you'll feel so much more positive. This is the darkest part of the journey. I do wish there was more support for this time when you're trying everything but you still feel awful. It can be so demoralising.
Thank you for you reply, it is so kind of everyone helping, I know I'm a mess right now but I hope I'm making sense. My results were taken in I assume the same as the test previous even though different labs, but test previous before starting thyroxine were tsh 5.13 iu/l and tt4 101 nmol/l ft3 5.35 pmol/l rt3 19 ng/Dl and rt3 ratio of 18.33 and came back as low as supposed to be above 20. B12 363pmol/l ferritin 78.8 ug/l folate 20.48 nmol/l. Vitamins d 43 nmol/l does that mean anything to you doesn't to me? Says on these tests these were private with blue horizon thyroid plus 12, says tsh high, reverse t3 low, vitamin d low but folate and b12 looks low in the range I gather
Oh I think you're doing fine! I tend to read too quickly so I may miss something but that's on me.
I think your tests would make more sense if you include the ranges (the numbers in parentheses) and if you put them in a column it will be easier to read.
Hi Max, I don't know about some of your side syndromes but I'm sure thyroxine is not poisoning you. It is probably better than nothing. I couldn't tell how long you have been on it. Did they start with 25 mcgs. and work up to your current dose during a couple of months?
I have read that acne may be due to high testosterone. I'm thinking you may need progesterone.....I don't know when you had the baby though. Is it possible you only needed T4 during your pregnancy?
You could go back and reread some of the previous posts as reminders by clicking on your own name.
It's been stated you can take T4 in a variety of ways. I wouldn't go this far when they said you could take a weeks' dosage on one day of the week because that doesn't sound sensible but it may mean you could do it less conventionally. Your need may be fluctuating.
You can take high doses of B12, some take 5000 mcgs. You may even need injections.
You can order T3 and even NDT. Ask people in the UK for recommendations by PM.
Thank you for reply. No she started me straight away on 100, my thyroid has been borderline for a year and half since my son was 1. Been getting increasingly unwell. But I feel the worst I have on this Levo, that's why I feel it's poisoning me, I just wonder if actually I'm b12 deficient not thyroid, is that possible, I know b12 bit low, would that falsely make thyroid borderline?
I didn't have anything during pregnancy this only started with thyroid issues after I had my child. And I only started Levo 4 weeks ago. I did listen to their advice and I tried taking it at night but I was awake all night and tired all day, now I'm doing a couple days 100 and one either non Eor 50 depending how I feel as the 100 constantly is causing too many severe aymptoms. My last test results I got of tsh 1.27 and t4 17.9 were after 2 days of no meds.
Yikes, starting off so high probably threw your adrenals into a panic and also your pituitary. They are involved if they sense you are hyperthyroid and that's what 100 mcgs. of T4 everyday make it appear. They will go into action like lowering the TSH output to stop so much thyroxine hormone (it doesn't recognize the pill from your own thyroid I guess) and then your adrenals sensing high thyroid will reduce cortisol. And cortisol uses ACTH which I don't know a lot about but you get the idea. And that is why you start low and let the body start absorbing the gentle increase and revs up your metabolism which in essence is your body temperature. You would not be at 100 mcgs. of levo even now if started off at 25. I think I'd go back to 25 and see how it goes.
Your B12 is low. I assume a slow metabolism has caused that as well.
I had mentioned high testosterone (your adrenal gland regulates all the sex hormones, progesterone, estrogen) as well your blood pressure and the steroids.
I am really sorry for you Max and I suffered on levo like many on this forum. The problem is that the medical profession have been told -levothyroxine alone and get the bloods 'in range'.
That doesn't work for many of us and it surprised me - in fact shocked me - that I felt far more unwell and developed symptoms I hadn't had previously.
Some of us may have a gene defect which means that we cannot convert levo (T4) to T3. In that case levo is less then useless.
I never had this test but as soon as I added T3 to T4 I immediatey felt an improvement. Eventually I tried NDTs but am now, finally, on T3 only and am well.
Also, we can be sensitive to fillers/binders in some makes of generic levo. There used to be a Brand-name but that was discontinued with the promise of it be resurrected.
The problem too is that doctors are completely unaware how we feel and how desperate for a solution that isn't forthcoming from the professionals and members will also respond and how they resolved their issues with levo.
We have to read and learn as all our bodies are different - can revolt against some things - even cheese or milk for some - chocolate for others.
First, I'd ask your GP if she would add some T3 to your T4 (most probably wont) but you could source your own for a test.
I am not medically qualified but have gone through the tunnel and have come out of the other side now
Thank you shaws, you are all so kind here. I said on another reply, could someone here or maybe a couple help me build a list of to dos and things to address Togo I'm in a constant state of fog and don't have anyone else. I want to get this sorted, but I'm finding sifting rough the replies challenging. I understand if not possible, but thought I'd ask in case someone can help me organise my list,
Is it worth having that conversion test? My b12 is 363, I'm in 3,200 vit d as is low, but if I start the b12 first will that mess with the results? What is the t3 one is that armour? What can I say is the reason for this to get gp to listen? I doubt she will but I'm willing to buy my own. Where can I get it please? She is trialling Levo and told me she's not supposed to be with my results. So I don't count on my help or knowledge from her unfortunately.
I am having 100mcgs for a couple days then 50 for one or none for one coz the symptoms are so bad, and although I feel awake I am awake all night perspiring, anxious, hungry, but when I drop to 50 or none I feel like I'm dying, how can I drop down safely, I think she chucked me in the deep end especially as I have pots, the palpitations are such that at night lying in bed I feel that's the end for me, I'm very scared.
First jobs: test and post results here. Look at knackersyards post below and follow advice for that private test which will measure the main things to start with. Don,t take the b12 until after you have taken the test. It will skew results. The test is available from
I don't know enough about it but by sticking to the same low daily maintainance dose until you get results will let you know what you need to do next - you won't die of hypo just yet. Do not take levo for at least 24 hrs before test, and, if it's a home test, take the test by 8 and no later in week than Tuesday morning. (Returning later in week risks it going over into weekend in the lab store. More info on the test kit and they have a live help line. )
From you other comments about your heart rate etc. If it's all getting that extreme, call a n ambulance. They might not be able to help with thyroid treatment but it might help to get some more investigations underway.
I see for this test you need to have a blood draw. (Some if them are finger prick draw. )That means you will need to ask your surgery to take the blood or arrange for a blood draw by private phlebotomist. The live helpline will explain how to go about this.
I understand completely you are scared with the palps.
I, too, had never-ending palps and ambulance at times to A&E only to be discharged as heart fine when it had calmed down. They did ease when T3 was added to T4 but few doctors will prescribe T3 (and it the UK I think it's now more expensive than gold). I had to appear calmer as husband was most concerned and had to deal
We just desperately want to feel better but, first I would see your GP again and tell her you want to start from scratch or just start again yourself, and see if your body settles down. (I have just read that if someone is over 50 - 25mcg should be a starting dose).
If you have a pulse monitor (I bought one from Boots) you can take an accurate result of pulse and blood pressure. My blood pressure remained good but pulse was quite disabling. Sometimes when first on levo it can cause our heart to feel it is speeding up too much but one of the clinical symptoms of hypo is low pulse so the work of T4 is to raise pulse and temp (both usually low) but not excessively.
Most members are correct that a smaller, gradual dosing is best. My viewpoint is that taking different doses during the week can confuse us, as it's bad enough not being able to think when being so unwell.
Thousands, when they get a levo which suits them continue with a normal life.
If you live alone, during the night is the worst particularly as I found the palps etc were most severe then and we just don't know that what we are experiencing can be common. I found sipping iced water calmed them down a bit. In reality we shouldn't have disabling palps.
Thank you for your reply I had that to begin with and my results showed tsh 5.15 and t4 14.3. In a matter of 4 weeks it's come down to tsh 1.27 and t4 17.9 gp now says my results are perfect. As I was only borderline she's started me way too high I think. It's hard as I don't know the exact thing to do some on here said 100mcg won't do a thing just like my gp said you either start on 10vg or nothing coz anything lower is rubbish. Well I'm obviously sensitive to it and I had no work up just straight 100mcg. Do I get another private test now?
It takes weeks for the level of Levothyroxine to build up in your system. If you are overmedicated the best way to go is to take nothing for 3 days, then start taking 50mcg a day.
Thanks outou reply, I appreciate everyone's help, I've been ringing Samaritans A couple times lately that says to me im at a bad place, but really that's not solving it, I need this damn dose and stuff sorted. I feel a bit more direction talking to everyone.
Hi MandM, you have some excellent advice here and I will not add to it, however, I would like to say that I too got to a point where I thought I was dying - and probably was. I was very frightened and limped into my hospital's insurance office (only the threat of losing money counts in the US) and demanded that my doctor and medication were changed - because I felt as if I only had a couple of weeks left to live! An angel must have guided me in because the lady in the insurance office had a thyroid problem but was on good medication from a good doctor! She gave me her doc's tel# and I went straight round there and (after a little arguing) got on Armour NDT and never looked back. My health returned within 20minutes of my first dose of NDT: Saliva returned to my mouth, I could wiggle my fingers again, I could get out of bed without almost falling over, my headache lifted like a black cloud and my eyes opened wide. Your life can turn round so don't get too down. It takes a bit of research, reading books, Googling and listening to people on this site. My thoughts are with you, keep us posted.
It comes as a huge surprise when we go to the doctors complaining about our experience and they don't appear to have a clue but will usually prescribe something to 'calm' us when it should be necessary to sort out our dose. We have to do as you've done, join a support group as those who've had similar experiences will respond and you will get more sense from sufferers than doctors, it would appear.
We want answers when we are taking hormones which are supposed to make us feel better and it backfires for some of us.
Anyway, at least you now know where takining half-baked advice can get you 😆 & survived to tell the tale.
Are you sure you did the PLUS TWELVE? That test covers Reverse T3, which would be a waste of money doing Before you're on Levo.
You could go two ways, depending on funds & how precise you like to be (I'm a bloke, I need fact, I leave hearsay for the Derek Accorah believers 😆)...
1) Drop your Levo dose to 50 or even 25. Stay on it for 6 weeks. See how you feel & go get blood tests & report back.
Or
2) Stay on your prescribed dose & take the PLUS TWELVE test. That will show you what that Levo is doing & help you make the right move.
I would do 2 (well I did. It showed me that 100mcg Levo didn't increase my T3 at all & was all going to rT3. So money well spent, I'm on T3 only & feel great).
Yes I did the plus twelve including reverse t3 showed my ratio was low. I don't know what any of this means though. I can't find option to upload pic once I made original post live but if you click on my previous thread you'll see my results, I understand if you don't have time though, but someone said my results looked like I need high t3 only, problem I'm finding is my brain is mangled almost and the level of info I'm receiving is not sticking, I'm so appreciative for help but I feel like a black cloud has swallowed me. I don't know what move to make next, blood test or b12' stop of carry on, armour, Levo or t3 someone also told me on here 100mcg won't do a thing as a starting dose, which might not be for some but it's don't some damage to me. It's lovely people are helping but I'm just unsure where I go from here. Sorry if that doesn't make sense,
I can buy another test I need this corrected. But I am unsure if I start b12 before then or wait. At the moment I'm having to take 100mcgfor a couple days then 50 or none for one as the symptoms are so severe, I am awake all night.
IMVHO, on these forums, only Admin or a few chosen users should be allowed to give advice. Whoever told you "100mcg won't do a thing" shouldn't be allowed to post.
I looked for your results, but can't see them.
Scan them in as JPEG or PDF & save it on Photobucket or similar, then post a link to it.
So when you did +12, were you taking medication?
I may be corrected here, but as far as I know rT3 only becomes an issue when you ad estraneous T4 (IE, take Levo or NDT).
If 100mcg Levo is really making you unwell, I would drop it to 50mcg. See how you feel.
Then in a few weeks, do the +12 test again & post up results.
If your B12 is 363, you need to take 5000 mcg sublingual methylcobalamin daily - you can find it on Amazon, brand names Jarrow or Solgar. Take that for a couple of months, and then drop down to 1000.
At the same time, you need to take a B complex, with methylfolate - this is a good one :
That low B12 is very likely making you feel terrible, so get hold of the tablets as soon as you can. Don't buy them in a supermarket or any other shop, because they're likely to be the wrong type. You will feel better as your B12 slowly comes up.
Hi there, thank you for your reply. I have bought a multi b vitamin from solar, I got it from Holland and barret I will check if it's got that one in it, is that folic acid? I will buy that tonight. Considering my tsh and t4 have only ever been borderline as gp says do you think my main problem is b12 deficiency and really I don't need thyroxine? My gp is using Thai trial as a way to decide if I can stay on thyroxine or not, which is not fair, as it started working a bit at first but now I'm in a terrible way.
Do I saty on 100mcg while I do that, I found out today I've gained half a stone in under 4 weeks! I cannot go on like this, Imlike a bloated balloon. It feels like there's an elephant sitting on my chest and I'm constantly out of breath. I'm breastfeeding, does that make any difference. Also got low vitamins d, my ferritin is 78. My active b12 was 101. Would I benefit from trying armour or t3 only, how do I get my gp to give me that? I feel like death is near every corner which is very scary, may sound dramatic but that's homest.y how bad I feel. I've got a fat round face atm too also my last lot of bloods at 1.27 tsh and 17.9 t4 was after 2 days of no thyroxine.
Sorry for all the questions but I need some help, hope you don't mind.
Folic acid is the synthetic form of Folate (B9). You don't want that. You want methylfolate. Methylcobalamin is B12.
Doctors don't understand the meaning of 'boarder-line'. And, with a TSH of 5.15 when you were diagnosed, you certainly did thyroxine - and still do, because it isn't just going to go away.
The hypo caused the B12 deficiency, not the other way round. And, you need to treat both.
Your doctor really is an idiot - but aren't they all! She's not doing things the right way. She should have started you on 50 mcg, and after testing at six weeks, she should have increased to 75. And so on until all your symptoms have gone. You can't just give someone a trial of 100 mcg and that's it. That's not how it works. How long is the trial for? When are you due your next tests?
I don't think breast-feeding makes any difference to anything, but don't quote me on that.
Are you supplementing your low vit D3? Because that is very important for 'thyroid health'. And your ferritin could do with being higher. So, maybe take some iron, too.
It's too soon to tell if you would benefit from T3 or NDT. The T4 hasn't had a chance to work yet. And, you would need your FT3 tested to know if you would benefit from it. And I very much doubt your doctor would give you one of those when she didn't even want to give you T4!
You may feel like death at the moment, but I don't think you are near death's door. You're just low in thyroid hormone and nutrients. That's how it makes you feel.
Sorry, but we really need the ranges to make any sense of the results. But the TSH is irrelevant, anyway, unless it's high. And having a decent level of FT4 is no guarantee that your FT3 is where it needs to be. Apparently, it isn't, because you still have all those symptoms!
Don't yet worry about your weight gain (a very common query). Get your dose right with no palps. It's normal to feel scared when our bodies feel completely out of control, especially we don't expect a prescription hormone to have an awful effect.
Blood tests should be used only as guides. It's how we feel that's the most important.
I have read that if one is sensitive to the fillers/binders if they take an anti-histamine tablet 1 hour before meds and don't have a reaction, they have to change the generic they are taking for another different one. There used to be 'Brands' of levo in the UK but now we only have generics.
Hi MaxandMe, so sorry you feel so unwell. You are not alone. Very good advice here. Hang on in there. While your gp is not pursuing further action right now, vital to get that screening and post results here, and take a copy to your gp. Even if you eventually decided to control your own dosing it's very important to keep your gp surgery on side.
If you feel too unwell to take everything in it might help if you just read in bites and copy down main advice points. Likewise list and bullet point concerns/symptoms for gp. Best bit of advice I read re consultations was to stick to the point and try not to get too emotional. That was near impossible when I was full blown hypo...I cried to see a snail squashed!
I note you are on beta blockers. If you Google beta blockers and thyroid hormone I think you will find beta blockers can reduce thyroid function and or interfere with replacement. You could look up all meds and potential interactions with thyroxin and ask (don't tell your gp. They might pooh pooh but it will go on your records if you feel like picking it up again. Im thinking along the lines of the simplest action first e.g if you are taking beta blockers for palpitations without known cause, then, when you get on the right replacement the palpitations might subside. I get them when both under and over replaced. And the stress that comes with being out of sync! I need to re check but I believe postural hypotension can be a common feature of hypothyroid, too. But we can only suggest on info you give. On the surface, I agree with above, immediate symptoms look like you are not getting or absorbing enough replacement. I'm on ndt but I have read enough forum posts to realise many people do just fine on levo once the body starts utilising. It is commonly said that replacement can make you worse at first, which is also why it is critical that your doc does this in a timely manner. Other folks swear they felt improvments within days but I'd rather bank on it taking time for your body systems to recover. All my doc said was, "umm...I think we'll start low and slow" without any other explanation or description of my illness. I found everything else out through books, medical articles and patient support groups like this. He probably guessed I was a PITA Googler.
Thank you. I feel so ill, do I get another thyroid function whilst remaining on the 100mcgs? Do I need the reverse t3 too. My gp knows that I always research and go to her with my findings but this fog has come over me and I'm in a hole, I genuinelyat times have felt life is not worth it which is very unusual for me, this medicine scares me. do I need the converting test aswell? Could someone please help me write down a list of things I need to do and ask gp, I know no one can do this for me but I need some support, my brain is really badly malfunctioning. I need some direction. I would be really appreciative, So I'm going to get the b12 aswell straight away online tonight! I'm serious in getting better, I am all my boy has and it's so hard to look after him right now. Can a low vitamin d and b12 cause borderline hypothyroid? Thank you. I am crying now and almost constantly since starting this what feels like poison. I really understand the snail thing.
P.s. I have diagnosed postural orthostatic tachycardia and hypotension, I've been ill for many years but this is by far the worst. I got diagnosed by autonomic testing but I just wonder if it was thyroid all along ha know.. Or b12
Hi I was overdosed.....they started me out high...... it was a mess.....finally I had to stop the meds start over with a low dose and build up. Also had to switch from generic to Synthroid......It took a while to get it all straight.....I also had to go to an an Endo who also is no genius. He wouldn't admit I was overdosed for several months. I wish you the best and there are many people on here that can give you support. Susita
Thank you for reply, I may be missing my replies up. I'm unclear if to maintain 100mcgs until I have a test as gp told me to stop mine for 2 days prior to last test as symptoms looked like severe over active. I don't know if I keep on till I get test or come off right away, do I start b12 before then too. Sorry for all questions,
Feel for you. Exactly same happened to me. Subsequently have read many articles saying if someone gets worse on levo they should be tested for Addison's are you able to rule that out? Have you had a synacthen test?
I've always wondered if cortisol was a problem, for many years unfortunately a bad gp really carelessly let me take high dose steroids for uncontrollable asthma off and on for a year, I think it really messed me up. Previous to that I was always on courses of them and on the longer ones they never weaned me down just told me to stop straight away
What is that test and is it a private test? I asked years ago when I first got misdiagnosed with me/cfs if I could have adrenal testing but answer was big fat no. Thank you for reply.
I honestly don't know if you can get it done yourself. I got mine via the endo on bupa. Others on here may know. If you can tick the boxes for Addison's symptoms I would try with your gp first to see if they will refer you. They basically take a blood sample then immediately inject you with a drug that should stimulate your adrenals to produce hormones. They then take another 2 blood samples 30 + 60 minutes later. They then compare the tests. Prior to synacthen testing they usually test your cortisol and your blood pressure lying down and standing up. I think it's only if you fail those (or get a non diagnostic cortisol value) that they send you for synacthen. Not sure if you have copies of all your blood test results but when I first got diagnosed with hypothyroid the lab automatically ran a cortisol test when my t4 and tsh was out of range. May be worth getting actual print outs to see if they did the test. I don't wish you Addison's as it sounds awful. Im praying for celiac disease if I have to have another auto immune disorder! But as the others have said it may be as simple as too high a dosage. I personally would try halving the dose and see how you feel. I felt better within 24 hours of reducing the dose (and I was only on 50!!) But it took 2 weeks for the symptoms to go completely. But frankly I would rather be cold tired and fat than poisoned..... i think your advantage in doing a half dose is proof the dose is too high if you feel better and your gp will find it harder to ignore. I wish you luck 😀 x
Thank you for the reply, what are the best levels for the ones you mentioned please? In uk mine would be. My b12 was 363 and vitamins d was 40 I think, I'm on vitamin d 3,200 iu pd
You've had plenty of great advice from other people. I just want to add that I also experienced very adverse reaction to levothyroxine. I felt like it was poisoning me and I just couldn't take it. It actually made me feel worse, not better. Some people just cannot tolerate synthetic T4 meds. I can tolerate ndt and synthetic T3. Have you considered trying ndt?
Hi everyone, I have read your replies miso thankful but I'm struggling to reply to all individually. It is such a support to me and I didn't want you think I'm not bothering replying I'm just finding it hard to, I started with one reply today and have struggled to do more. I've added my test results, I don't know they weren't on my previous post, when it was added. Shaws can you see this reply? How do I tag admin? and maybe is there a way everyone who replied to me can see it? I'll try to reply individually but will take some time. Thank you for your help everyone xx
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im in extreme amounts of pain. my menstrual cycle was delayed too with extra difficult symptoms.
Help me – desperate for advice. Feel so uncared for by endo :( 
Please help!!! Suggest some legit T3 supplier. I am very desperate for help. Inbox me please. 
Please help with blood results and feeling very unwell.
Please help me guys...a little upset and unwell!
