I've already posted on this a few weeks ago, and I've increased my dose from 50 to 70 mcg levo about 10 days ago. I'm feeling truly awful, desperately tired and weak. My brain fog and some joint aches have diminished somewhat but I feel more depressed, less able to interact with anyone, somehow removed. I'm having real difficulties running my business as I can't concentrate. I've asked my GP to help with a 2nd opinion I was to get from an NHS endo my 1st endo referred me to, but I've heard nothing. I really don't know what to do, I crash sound asleep after my main meal of the day in the evening, just can't keep my eyes open. I think my problem is central hypo and I'm now concerned that the levo is compromising my adrenals. Any help would be appreciated.
Feeling really awful on Levo: I've already posted... - Thyroid UK
Feeling really awful on Levo
Presumably you mean you increased to 75mcg
Same brand as when on 50mcg ?
My brain fog and some joint aches have diminished somewhat but I feel more depressed, less able to interact with anyone, somehow removed
Very common to feel better and worse
…it should start to improve after 6-8 weeks on higher dose
Hang in there until 6-8 weeks, then retest
You could try splitting the dose, taking 50mcg in morning and 25mcg at bedtime
Are your vitamins optimal
Thank you SlowDragon, yes, apologies I meant 75mcg. I'm already splitting the dose but it's not helping, today was just dreadful. Why am I falling asleep after my meal? I'm avoiding high carb meals as I know that blood sugar swings aren't a good idea. My vitamins were optimal last time I tested and I've supplemented since then. I stopped b multi a few days ago as I'm doing a cortisol test in a few days.
I think getting up to 75mcg is the hardest step
It’s high enough dose to really reduce your own thyroid output (not that your thyroid appeared to be doing much) so your body is having to adjust to just Ft4
You may need to consider adding SMALL dose of T3 next …..ideally get bloods tested after 6-8 weeks
Ok, thank you, it certainly feels like the hardest step. Would it be worth reducing to 50 on some days and taking it more slowly? My last thyroid test showed good conversion to T3 would I still need to add more?
If it’s really unbearable then you could reduce….but don’t chop and change
Either reduce to 62.5mcg daily…..
Or try 75mcg and 50mcg alternate days
Wait 6-8; weeks and then retest
Ok, thank you.
Why is getting up to 75 a hard step please? I’m on 50, just started in April and may/likely/probably at some stage get to 75. Forewarned is forearmed. Thanks.
I'm avoiding high carb meals
Have you reduced your carb intake and not replaced the missing calories with fat or protein? Your total daily intake of calories could be too low for someone with thyroid disease. We all need sufficient calories. People like us usually don't cope with very low food intake, and you may have to incorporate more carbs into your diet.
Hi Jamima, I tried levothyroxine 3x and felt awful too. All my symptoms were twice as bad. So I did some reading into alternatives and tried T3 only at first and then found I needed NDT as well. Not everyone suits Levo. And the alternatives are not free. Also, your diet should be carefully looked into.
Thank you judithclaire. I’m self medicating as I’ve been told my symptoms are either CFS, menopause or ‘all in my head’. My results indicate central hypo. I’m not sure where I could improve my diet as it’s already pretty good.
Jamima, Falling asleep after eating, feeling desperately tired and weak can all happen when FT4 and/or FT3 is too high. Can you post your most recent thyroid test results here in this thread, so that we can see why you increased from 50mcg to 75mcg levo.
Thank you RedApple. These are my most recent results. Since the last test, I increased by 12.5 and in the last 10 days by 25. I also have very bad postural hypotension where I have to steady myself, my instincts say to stop levo, I felt bad before but now this feeling of weakness is really worrying me.
Results 3/3/22
TSH -1.03 (0.27-4.2)
Ft3 - 3.9 (3.1-6.8)
Ft4 - 12.8 (12-22)
Results 18/5/22 - same range as above
TSH - 0.07
Ft3 - 4.98
Ft4 - 16.3
Jamima, 'my instincts say to stop levo'
You might be right.
What were the thyroid levels before you ever started levo? It may be that you are travelling down the wrong path and need to look elsewhere for the cause of the health issues that you had before you decided to investigate thyroid.
Bear in mind that not everyone needs high levels of thyroid hormone. This forum will have a skewed balance of members who tend to need high levels. Those who do not are less likely to be seeking help on a thyroid forum 😀
Thank you Red Apple - the first results were before levo, and for about 4 years before that they’ve all been the same - low/normal tsh, low t4/t3. Is it better to titrate down or just stop?
' Is it better to titrate down or just stop?'
This jury is undecided on that one 😀 If it were me, I'd be inclined to just stop. But I know others advise titrating down gradually.
I’ve managed to get my endocrinologist to prescribe a trial of t3 … he was very reluctant but has decided to trial as I’m on 200 t4 and feel like in walking through mud … constant fatigue and brain fog…. I’m a week in and already feel improved …. Cognitively feel clearer … early days but I am hopeful xx good luck
Hello Jamima, I'm a diabetic as well as having hypothyroid, and I recognised something in your post, in relation to going restricted carb ... I originally went low carb and low sugar at the start (right after diagnosis) and I paid for it ... I was exhausted, dizzy, down, and felt pretty awful. My diabetic nurse told me to reduce the carbs and sugar slowly, and reminded me that my body had been used to higher carb/sugar intake, so it would be a shock which is not without its symptoms in some folks.
So, I raised my carb intake and sugar intake - and felt way much better. Then I started very slowly reducing the carb levels instead of being as strict. I exercise after eating a meal (just 15 minutes walking in the garden!) and do a few squats or gently lift dumbells, and this deals with the carb dump in my blood and reduces my levels. My A1C has dropped 30% by doing this.
Also, I just got raised to 50mcg on my levo, because my latest blood test showed I'm still hypo on 25mcg - but as the lovely ladies on here informed me, that's a very low starter dose. But I wanted to tell you, I felt quite good - at first - then started to go the other way. I had headaches - but they passed. I then felt quite tired and down just before the GP raised me to 50mcg. Now, I've got more energy and feel OK again. Sorry for lengthy answer, but when I read about the carb/sugar drop and the way you were feeling, it sounded suspiciously familiar to my experience at the start of diabetes 'control' with myself.
Hope you feel improved soon! Best wishes.
Thank you Macarthy - I’ll try a little exercise after eating. I don’t think I’m pre diabetic but I had a partner who was diabetic and he used to fall asleep immediately after meals, that’s why I’m worried. I don’t have any other symptoms of diabetes, but I know the HPA axis is a complicated mechanism and something is awry.
Hey Macarthy
I too was started on 25 µg of levothyroxine, but I was left on it for six months 😱 I hope you haven’t had to wait that long. With each dose increase, I noticed feeling better came quicker the feeling of wellness lasted longer and the tapering off became more subtle towards the end, but I could tell that I needed my final upping of 25 µg. I am now on 150 µg of levothyroxine.
I have a detailed my journey on my profile hopefully to help others.
It’s great when your brain and everything else starts working! 😊👍
Hi Charlie-Farley, thankfully they raised my Levo after 10 weeks. Good to hear your take on this and learn those feelings of wellness last longer with increase! That adds to my confidence 😃!
I’m so pleased they are doing timely dose increases for you. My lot would have left me on 25 µg of levothyroxine if my husband had not advocated for me because at that stage my brain wasn’t working and I was too weak to argue about anything.
Needless to say once I started getting levothyroxine and my brain started working I was all over it! I’m now extremely mistrustful of poorly educated med professionals.
My husband isn't diabetic, but he has experienced feeling rough on low carb, too, just a thought it may be the carb drop? My husband also feels very sleepy after a meal. Hope things improve for you.
Low carb ‘flu’ is common. Maybe you need to revisit your diet to make sure you are eating the correct level for you. We are all individual and differ quite a bit.I know when I looked at moderating carb intake ( I am diabetic) the tables issued to diabetics advised the carb intake in a baked potato to be around 55 g and a portion of boiled rice to be around 40g. Wonder why so different from your information suggesting baked potatoes is lower than rice. Possibly the portion size of each you would eat. However no idea what other carbs you have cut out which might cause symptoms.
I am inclined to suspect that perhaps thyroid health isn’t your problem at all. Maybe you should stop and reconsider other options. If feeling brave you might try a different GO at your surgery and advise him of your experience trialing levo for yourself. They may be able to suggest an alternative to a thyroid problem which you haven’t thought of yet. Good luck.
I can’t believe I was going to post the exact same question here! Thank you so much for writing this. I too am on a trial of levo at my request (my dr said i could try it) and am at 75 mcg and feel awful. Tired and napping a lot in the day (and I don’t ever take naps!). I can barely function and before I could function but didn’t have exhaustion, just brain fog and memory loss plus light sensitivity.I’m reading all the replies here as well. I’m trying to hang on until I get my labs of Tuesday, but my dr said he’s going on how I feel and not labs so of course I’m not feeling good at all.
Thank you again for posting. My numbers are similar to yours and I may stop levo later this week if i still feel awful.
Oh, coincidence! I hope you get some helpful info from replies. I think/thought that my problem was central or secondary hypo as I don’t have high tsh, and it may still be that, but I can’t tolerate the levo anymore. I have seen some improvements but other symptoms have popped along which I’m really not comfortable with. I’ll follow you to see how your journey goes.
Yes I also think I have central hypo, my tsh was 1.63 at last check. My ft4 is usually 12 (9-19) and antibodies negative. I’ve also noticed a bit of improvement, entering stores after being outside is as unbearable on my eyes and focus anymore but maybe that’s because it’s summertime and bright out?I can’t follow you on here (can’t find the button?).
Not sure how to navigate this but glad for the comments here. It’s all so helpful.
Hang on Snooperkitty21😊
Before coming off anything (despite my mistrust of doctors) have a chat with GP. There are your common or garden Hypothyroidism sufferers that have autoimmune Hashimoto’s/Ords (I’m common 😂) and then there are some less common varieties.
“Central hypothyroidism refers to thyroid hormone deficiency due to a disorder of the pituitary, hypothalamus, or hypothalamic-pituitary portal circulation, resulting in diminished thyroid-stimulating hormone (TSH), thyrotropin-releasing hormone (TRH), or both.”
(Definition copied from Google)
I cannot recommend enough how beneficial reading a good introductory book on hypothyroidism is. Yes it’s a bit technical in places, but like any subject just keep chucking yourself at it and it does eventually stick - even for me! 🤣👍 (honestly worth it in the end)
We can have the same suite of symptoms for completely different reasons from one another. When you keep reading others lived experience it really helps to get the picture.
Start a separate post and get some of the more knowledgeable contributors in on the conversation- all lived experience.
Thank you very much Charlie-Farley! This makes sense. I’ll start a new post after my updated results next week. I’ll pick up a thyroid book. I did think central hypothyroidism for myself but have had 2 MRIs with no findings so I figured the pituitary etc were fine.
Thanks again for your comment and advice!
Hello again!
Noticed you are still getting to grips with navigating site. If you want to follow someone, click on their face/avatar and it will take you their profile. You can follow from there, read their story which is important (really helps if people summarise at least the journey). There are also past posts contributions etc. I’ve got a ‘war and peace’ story but I’ve put stuff in there about how I successfully argued for meds increases when in range. I’ve put anything in there that might help another person.
Hope this helps 😊👍
Thank you! I clicked on your profile and you have a follow button but Jamima does not? Maybe it’s a profile setting? Some people follow me and I do follow a few people as well. I’m not sure. Thank you for the tip about past posts! I’m glad to read them.
Each member has the choice of allowing, or not allowing, followers.
Entirely a personal choice.
Some stopped allowing followers after being subject to being followed by members who they did not want. Most of these unwanted followers have been banned once HealthUnlocked have been made aware.
Oh I understand, that makes sense. Thank you for explaining!
I've just changed my settings snooper kitty, I'm not tech savvy but I think the option to follow me is now available.
That’s great, I think I’m tech savvy but my teenagers still know a lot more than I do! I will follow your journey as well.
Cool 😎 Snooperkitty21, Jamima , helvella
I Love this site ❤️🤗
Me too! I read it every morning! 😃
Hi Jamima,
Sorry you're feeling so unwell and tired.
I don't know if you remember but I'm also being investigated for central hypothyroidism but still not fully diagnosed. Although they have found that I have a thyroid nodule and so I'm having regular FNA on it due to its size.
With you mentioning doing a cortisol saliva test that may be a good plan. From any reading that I've been doing around central hypo it is said so many times that your cortisol/ adrenals need to be checked properly before starting levo. I know you had a synacthen test done did the endo discuss the results with you?
I'm not quite with it today but there are many on the forum (as you know) that are much more knowledgeable of these issues and will be able to advise you.
Take care.
Hello Hedgeree - yes, I do remember you and I'm following you to see if you progress with CH. I don't know if I have CH, but adrenal issues were always the biggest issue for me - postural hypotension, weakness, a surge of what feels like adrenaline at 5pm and 11pm and feeling better as the day progresses, particularly after 7pm. I stopped levo yesterday and introduced a 1/4 capsule of adrenavive and the result has been quite startling. My thyroid levels won't have changed so this may indicate that as is usually the case with CH, I need both thyroid and adrenal support. I've got the regenerus test now and plan to do it tomorrow although I'm not sure if I should continue with the adrenavive whilst testing - perhaps someone could comment on that. Only time will tell when my thyroid levels drop if I need to continue with thyroid hormone in some form. I'm also considering introducing a tiny amount of oestrogen as that was under-range alongside testosterone and DHEA at my last test. I use 10mg of progesterone and 1 Siberian ginseng daily too. I really resent treating myself like a lab rat but there's no way I'm going to establish what's wrong unless I do. Hopefully we can help each other along this journey if it is CH. Thank you for your reply.
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