Afraid to increase my levo dose

I know I'm being silly as I was even scared to start 25mg in may but I did. I have anxiety about new medications as I've had 2 very nasty meds reactions in the past.

I had my bloods re tested 7 weeks after starting levo and they showed my tsh had dropped from 9.28 to 6.8 (0.2-4.2) and my t4 had gone from 15.7 (12-22) to 17.4 ish. I asked to stay on 25mg as I thought it was helping as I was feeling a little better.

In the last few weeks I've had fatigue again, energy crashes and felt weak alot. I'm struggling taking care of my family feeling so weak and poorly. I re tested last week and my tsh had gone up to 7.9 and ft4 dropped to 16.5. I spoke to my gp Friday and he said 'oh that's strange it's gone back up'. I'm my head I was thinking no its not!!! He wants me on 50mg. I agreed but now I'm afraid to take them for a couple of reasons.

My gp has never really been helpful and I've felt I've diagnosed myself. For about 7 months be blamed anxiety and depression. I was so ill, having energy crashes even just hoovering my house or over doing things with the kids. I'd crash like cfs and be bed ridden for a day or 2 sometimes a week. Zero energy, weak burning thighs and a general ill weak feeling. My anxiety rocketed so my gp blamed anxiety and depression. I didn't feel depressed just afraid of how ill I felt. He told me my results were fine so I went private and showed my tsh was climbing then he said he would treat at tsh of 10. Now he's always said my ft4 is fine and said if you take levo and t4 is ok you'll get hyperthyroidism symptoms. He said you don't want then as you have anxiety and it will give you a fast heart and panic attacks. Which having anxiety puts me off. Being ill has given me anxiety so I feel bad enough. I don't get the fast heart with my anxiety but I've ended up agoraphobic, social anxiety and just afraid of being so weak and poorly. My gp just suggesto more bloods for different illnesses. He visit me 2 weeks ago and just gave me a blood form for more bloods like lupus, glandular fever, diabetes.... instead of listening that how ill I was feeling again was like how ill I was last year. I hadn't called him out to see me in 8 months. I felt he didn't take me seriously.

So now I'm afraid to start 50mg. Incase I bump that t4 too high and get nasty side effects. And what if he is right and I do have another condition. He has given me thyroxine but still wants bloods doing to rule out other conditions. Further more increasing my anxiety 😣 I've not had them done because right now I can't get out to do the bloods. My anxiety is awful at appointments.

I have taken 25mg today at 7am and couldn't bring myself to take the other 50mg. He told me to take 2 25s until Monday when my new dose will be ready to pick up.

Sorry to post again. Can anyone reassure me please?

48 Replies

  • Jingyd,

    The new introduction of only 25mcg Levo often tricks the body into thinking there is just sufficient hormone and so it rests from trying to make further, meaning we actually end up with less hormone than before we started medicating. This would account for your worsening symptoms as your bodies need for hormones weren't meet.

    Your latest test result showing a rising of an already inflated TSH indicates your need for further thyroid hormone.

    Some people do experience strange symptoms, as the hormones we are most deficient in can be the ones we find most difficult to initially tolerate but symptoms will pass as you become optimally medicated, although this can take a while.

    Anxiety & depression is hugely common in people with thyroid and adrenal issues and usually improves as good benefits of the meds are felt. Your doctor is talking rubbish as taking thyroid meds when you are deficient in these hormones will not make you hyper, as you are only replacing those that are missing. You can take the whole 50mcg dose at once on an empty stomach with a glass of water, 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D supplements.

    Thyroid hormone replacement will work better if iron and nutrients are optimal. Because of the previously suffered low thyroid hormone we often encounter gut issues and absorption problems. Therefore, it is common for people with hypothyroidism to suffer deficiencies in the very nutrients that improve thyroid function. Ask your GP to test Vit B12, folate, ferritin, Vit D and post results complete with ranges (numbers in brackets) for members to comment.

    It is bad enough being ill without doctors demeaning us. You will get lots of support on this forum from members who have had similar experiences. Have confidence as the only way to replace those missing thyroid hormones is to replace them with thyroid meds.

  • Thank you.

    It's been 2.5 hours since I took the last one and I've still not taken the extra 25. I've just cried afraid to do it as I jad a nasty reaction to a medication once and it caused a fast heart.

    I know I have to do it I'm just afraid.

  • Julie,

    Levothyroxine has a long half life, meaning it works slowly and stays in the body a long time. This avoids big onsets of unwanted effects.

    Be gentle on yourself and have confidence.

  • I've just done it and I'm crying. My husband said come on Julie you can do this. You could get your life back. It made me do it but now I'm afraid. He said you can't have an allergic reaction as your body is used to 25mg. You won't over medicate as your thyroid is low. Is he right? But my t4 is what the gp said can go too high and make mevery hyper causing a fast heart?

    Thank you for being supportive I appreciate it.

  • Julie,

    You will give yourself a "fast heart" with all this anxiety.

    CHILL.. and get reading. You are on the road to recovery.

    Good luck.

  • Lol! I'm lucky I never really get a fast heart when I worry 😀

    I'm relaxed now. Thanks for all your advice.

  • I forgot to mention. All antibodies negative and my b12 is 1070 (was 212 a year ago) ferritin is 49 (was 15 a year ago and been low all my adult life). Vitamin d 70. Iron level 14. I have them checked a couple of times a year.

  • Julie,

    All good except iron. Low ferritin can cause negative reactions like palpitations, nervousness, and anxiety in someone starting thyroid hormone replacement ! ! ! ....

    The body needs iron for carrying oxygen throughout the body and to assist in digestion (enzymes). When iron levels are low it slows down the conversion of T4 to T3 (needed for well being) as this requires the iron containing enzyme "thyroid peroxidase" to produce the thyroid hormones.

    I don't supplement iron but members appear to have good results from Ferrous Fumarate, taking each iron tablet with 500mg-1,000mg vitamin C, to aid absorption and minimise constipation (or Apple Cider Vinegar).

    Great antibodies were negative. Did you have TPOAb & TGAb tested ? ? ...

  • Hi Jingyd,

    I totally agree with radd's reply.

    If you feel that you can't face taking the extra 25mcgs you could try taking an extra 12.5 mcg .

    That would mean that your dose would be 37.5 mcg. Stick with that for a few days or so and see how you are.

    The truth of the matter is that your Thyroid really needs the hormones to get you well and you are not helping the poor wee gland by starving it. 😊

    Please try and think about it J,

    J 🍀

  • Thank you. I've been sat here 2.5 hours since my first dose scared to take the extra 25mg. Can you break them in half?

  • Yes you can my Dear.

    I just put my tablet on a wooden/ hard chopping board.

    With a small sharp knife. I put the point of it on the board and bring the blade down in the middle. There may be a line in the tablet, but if there isn't it works the same.

    J x

    Ps or you could ask hubby to do it😀

  • I've been brave and taken it. Now I'm very afraid.

  • Good woman, well done and keep going.

    J x

    That's your Thyroid fed for the day.

  • Haha thank you so much for being kind xx

  • 😘


  • Feel free to break in however tiny bits you want. A close friend uses her teeth to nibble the pills

  • Thank you all for being so kind..I bet I sound a right idiot lol!

  • I use a pill cutter £2.50 from Tesco chemist x

  • Just replied on your previous post but radd has given some good advice here.

    Increasing to 50mcg levo may help with the anxiety as this one of the symptoms of an under active thyroid. Have you had your antibodies checked as you may have autoimmune hypothyroidism (hashimotos) if not ask for these to be tested as well.

  • Thank you.

    Yes and negative all 3 times.

  • Hi, you are not being silly -just mindful. Please don't be afraid of an increase in thyroxine. It will not help staying on 25 mcg, I was not given any thyroxine for over 15 years and then put on 25mcg for 5 years. It was during that time that my condition just got so bad I could hardly function. Finding this forum as helped me to get educated about Thyroid illness and in improving my health. Last September I insisted on 50mcg and then in May I increased it to 62.5 mcg ( I quarter the tablet). I feel much better on this even though it is still a low dose. I am prepared to get it increased again as and when necessary. I too am anxious about taking new meds but I have not regretted increasing the Thyroxine. It takes a few weeks to kick in. Your anxiety is awful because of your illness...been there quite badly whilst under medicated. radd has given excellent advice and the test they have suggested are essential. Deep breaths you can and will start to feel better when you get the correct dose of meds. Best Wishes from someone who totally gets you x

  • Thank you so much for your kind reply. It's a comfort when someone totally gets you.

    I've taken the 50 so here's hoping I will be ok and things will get better.

    I posted 2 days ago about feeling like I have cfs with how I crash. I got no replies which has worried me lol! I'm just praying levo will help me. I've been ill now for a year with the worst chronic fatigue, muscle weakness and burning thighs on my crash days. I can't over do anything. Even too much housework throws me into a crash. You can imagine how tiring thr summer holidays with 3 kids has been haha! Tomorrow will feel like a holiday 😀

    Thanks again for your comforting reply.

    Julie x

  • I didn't go anywhere for a long time and if I did I relied on family to be with me. Sorting out the Thyroxine and supplements has given me back a lot of my independence. I don't go far but I can shop and visit relatives nowadays. I'm trusting you will soon be feeling much better and will post to let us all know. You aren't alone and praying is always good. My 3 kids are grown up with their own families now , I was ill all of their lives. It is never too late to start recovery, this time a year ago...I was ready to totally give up, thank God I did not because my thoughts and hopes have changed for the good. Get that Doctor or a better one from your surgery to come out and do your test for you. Don't forget to ask them to come early in the day and make sure you fast and take your thyroxine after your test. You deserve much better treatment than you've been getting, like many of us with thyroid conditions. I always say get out your Boxing Gloves and start fighting back...I am glad that I did.

    Take care xx

  • Thank you so much.

    I'm so glad you're much better and did not give up.

    That's my fear, never improving and my children just remembering me ill. I've been ill with anxiety and now this for 4 years since I was attacked by my brother. My children are brilliant and have a happy childhood but this last year they've seen me very ill some days in my bed which I hate so today I took 50 for them. Also from me because I'm desperate now for my life back and get over this agoraphobia and anxiety like I have before. Bring ill really brought it all back for me. I rely on my hubby alot and I want that to stop. I also don't want to be ashamed asking my gp to visit me at home.

    I will get the bloods done in a few weeks. They aren't thyroid. I do them privately at home via a finger prick test from medicheck. The bloods my gp wants doing are for lupus, etc... just to rule more things out instead of just helping me with my thyroid that he's admitted needed treatment. It's as though he still doesn't believe it can make me this ill. I've had chronic fatigue for so long yet no gp has taken me seriously. I've tried everything gp there and this is the first one who agreed to treatment but even he took convincing when my tsh was 9.28! Lol!

    Thanks again


  • I've sent you a Private Message x

  • Jingly, you've got to stop listening to your doctor - I keep telling you that! He's an idiot and I think he enjoys scaring the living day-lights out of you! You are not going to become over-medicated on such a tiny increase. Do you realise just how tiny 25 mcg is? And, in any case, it's not your FT4 being over-range that makes you over-medicated, it's how much FT3 you have. And you can't have much FT3 because your TSH is so high. Your doctor really is a moron scaring you like that!

    And, you must stop thinking of levo as 'medication'. It's not a drug, it doesn't act like other medications. You're not drugging yourself up, like with the antidepressants, you are just replacing the hormone your body can no-longer make. It's nothing to be afraid of.

    50 mcg is a pretty low dose - some people take more than 200 mcg! So, 50 is nothing exceptional. :)

  • Thank you.

    So you don't think I need all these further tests? Right now my agoraphobia isn't great so going for bloods fills me with fear and that's because last September he was ignoring my thyroid concorns and forcing me in for more and more tests and during a blood test for diabetes I had a huge panic attack and since then I'm terrified of every going back.

    My t3 has always been in range so that's a worry. It was 5.6 last test (3.1-6.8 range) I didn't have t3 tested this time just tsh and t4 but will have it done next time.

    Thank you


  • I didn't say anything about further testing. I just said your TSH is too high and you need an increase in dose.

    It's always good to do further testing. Just because you have a thyroid problem, doesn't mean you don't have other things too.

    But, you've got to try and get over the past, and not let it rule your future - you afraid to go for tests because in the past... you're afraid to increase your dose because in the past... That's not the way to get well! It's hard, I know, but just because things happened in the past, doesn't mean they're going to happen in the future. But, if you keep dwelling on them, you will be stuck in the past. Think of the future, and getting well again. Do you not have someone you can take with you to get the blood taken? I'm sure that would make it easier for you.

    Your FT3 has plenty of room for an increase. It won't go rushing up over the top of the range with one little increase of 25 mcg T4. Stop looking for problems! :)

  • Thank you.

    Unfortunately having agoraphobia it's not as easy as someone coming with me. I wish it was.

    I will get the bloods done at some point though. I shall ask him to come to my house maybe. He took blood at my house in December.

  • Yes, I do know about agoraphobia. It goes with the disease!

  • Mine was triggered after my brother attacked me 4 years ago as I have had anxiety and agoraphobia since but since being ill it has worsened for sure.

  • But, then again, you don't know how long you have been hypo, do you. These things don't happen over-night, they start slowly and increase gradually, and by the time you notice there's a problem that suggests thyroid, you've already been hypo for a long time.

  • True. I had my thyroid first tested in 2013 which was when my agoraphobia had been happening for about a month. I put all the anxiety down to the trauma i went through. My GP ran tests as he suspected a thyroid problem but told me my results were normal.

    TSH 4.9 (0.35-5.35)

    FT4 10.2 (7-17)

    He didn't re test me until last summer when the TSH had crept up to 5.35 and he still said nothing was wrong. This is a different GP to the one i now see and he isn't much better informed. Sadly the best GP has now retired, he treated my friends thyroid and she told me he was amazing.

  • Yes, well, what he meant was 'in range', because it had nothing to do with 'normal'. You are hypo the minute your TSH hits 3. So, you were already hypo at the time of your first test, and you now feel so bad because you have been left hypo for all that time. So, you weren't able to recover correctly from your trauma.

    Now, you've got to get your levels up and start to heal. :)

    I don't think all those tests are urgent. Take your time. You'll get there one day.

  • Thank you so much :-)

  • You're welcome. :)

  • Like you I have always had side effects from the most innocuous tablets so when I learned that I had an underactive thyroid and had to take levo I was pretty nervous. I started on 25mcg and have had no problems. I have also sourced magnesium and Vit B12 which I needed that doesn't upset my stomach now, so am feeling a lot more chilled about it.

    I had my first tests last week after being diagnosed and the Dr said I was OK to carry on with only 25mcg but after consulting the helpful folk on here, I realised that I should up my dose. I emailed my Dr who agreed with me (funny how we have to instruct our Dr on how to proceed!) Anyway, as I was also a bit nervous about suddenly doubling my dose, I am taking 50mcg one day and 25mcg the next and will alternate like that for another week or so when I will then take 50mcg each day.

    I am a worrier and anxious about my health and before I was diagnosed had all sorts of symptoms that tests did not diagnose, and I was convinced I had MS or some terrible disease and was terribly down about it for the best part of the year. Try to think positive that now you have a diagnosis, and you are getting treatment which will in time make you feel better than you did. From everything I have read on here, it does take time to get the meds right and you will need monitoring, so give it time. I have to say I already feel better for being on a higher dose of levo and haven't had any sort of side effects from it.

  • Thank you so much. I appreciate you telling me about your concerns.

    How long have you been on 50? I'm so glad it's helping. Can I ask how you felt before the 50 started to work? Reason I ask is I posted a post here a couple of days ago asking if anyone else felt very ill having ano underactive thyroid. Because I have bad fatigue all the time and energy crashes if I over do things. Even too much housework will make me poorly the next day. I will be in bed feeling weak, drained beyond belief and the worst fatigue. It's horrible and I have to really pace myself.

    I've taken 50 today so let's hope it will be ok.

    Thanks again

    Julie x

  • That is a beautiful reply x

  • It's only been a couple of weeks I think, but I thought within a day or two I would be having side effects but I am just trying to think positive that this will make me feel better long term. If I need to up my dose in the future I shall try not to worry about it but just introduce it gradually as I am doing.

    Have you had your vitamin and mineral levels checked? You will read on here how important they are to us 'hypo people' and I think some of my neuropathy (tingling) symptoms and weakness in my legs were down to low Vit B12 which I am now taking.

    Radd mentioned it in the first post so do get those checked too. Low levels of magnesium and Vit B12 (which I had) can cause fatigue and anxiety. It's all a bit of a balancing act and I do think it takes time, but I am certainly hoping that now I have a diagnosis, that this will explain many of of my recent ills ( and it's not all down to the menopause!!).

  • Good to hear!

    Yes I've had thorough testing private. In August last year my b12 was 212 and ferritin 15. I supplemented and now ferritin is 49 and b12 1070.

    My vitamin d is 70 ish. I'd never had it tested before but I had it recently after about 6 months supplementing it so it probably was low as I've been taking 2000iu a day.

    I've always had low ferritin levels. I had very heavy periods all my life so that was blamed.

    Thanks for your reply.


  • Julie, you need to take Vitamin K2 Mk-7 when supplementing with Vit D / Calcium/Magnesium. It pushes the calcium into your bones and away from your blood. I found this out the hard way..but I stopped taking the Adcal the GP prescribed and supplement with Vitamin D/Magnesium Spray ( spray directly onto the body) and occasional Magnesium Citrate. The only exception to NOT take the K2 is if you are taking Warfarin or other blood thinning drugs.

    My blood calcium has now thankfully dropped below over range . x

  • Thank you very much for your help.

    Is there an issue with taking vitamin d3 without k2?

  • Yes it needs Vit K2 MK-7 to send the Vit D and Calcium into the bones where it should be. I was not told this by my GP and so was ignorant of the fact. My last but two test results showed that I was over range with calcium in my blood. It can be dangerous there. If taking Warfarin or aspirin or any blood thinning meds, then do not take the K2 because this thickens the blood. A lot of manufacturers sell combined Vit D and Vit K2 because they are aware of this need. I wish I'd known beforehand. x

  • Crikey. I take a vitamins D3 spray. I shall stop, will that correct it?

  • I don't use D3 spray? but if it's an oral or body spray it is still going into your body, you shouldn't stop it unless your levels are optimum. Just add Vit K2 Mk-7 to your supplements. Some people take food that contains Vitamin K2 like Roquefort cheese for example. I am dairy/gluten/soy free so I take the supplement. Vitamin D is essential, my levels are optimum now so I just use D3 less often but I continue with the K2 daily because I am trying to undo the high blood calcium, I was given Adcal by my GP and was taking it for some time before I discovered what was happening. Don't get panicking over this but it is worth having your calcium levels tested at some time. x

  • Hormones are very forgiving and will reduce the moment you stop taking them. Try taking more, what have you got to lose? Your doctor will tell you its not your thyroid but nine times out of ten it is.

  • My GP never accepted it was my thyroid even when my TSH hit 9.,28!!! I am sure he still thinks I am a liar haha!

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