Since a young age, I have had hyperthyroidism. I was treated with carbimazole for years and in 2021 I had radioactive therapy (a radioactive table) for my thyroid. This ended up killing it and now I am on level thyroxine. When I first got diagnosed with hypothyroidism, I believe my TSH was 60-ISH. Since that time, it has not been in range. For the past two years it’s been between 8.0 and 60 TSH, doctors have not been able to figure out the right dose for me, I was also bad at taking my tablet and it just never got back into range. Please don’t come at me, I know how important it is to take tablets. It was a mistake that I made when I was younger, but I take them every day now. Recently, around 2 1/2 months ago I was put on 175 mg (previously being on 125mg) of levothyroxine and now my thyroid level after years, is in range. I don’t have the exact range, but I know that my T4 is 22, and the top of the range is 25. My TSH is 0.8, and again I don’t have the bottom of the range for that. For the last two years my thyroid has not been at this level. It has been hypo, and my body was slowly getting used to it. And now that my thyroid is in range, at the lower side of “in range”, I feel awful. My doctor said that maybe it’s because my body is not used to have a normal thyroid hormone levels, and I do agree because they have been out of whack for two years and maybe now my body feels like I’m being overmedicated when I’m not. I feel the following symptoms. Very bad irritability, I’m unable to control my emotions, numbness and tingling in arms, and muscle weakness, I have bad anxiety, I have very bad headaches and pressure around my head and eyes. I get blurry vision, sometimes I also feel like reality is different. I believe this to be a derealisation which is actually a side-effect of taking thyroxine and anxiety. I also just feel really low because I constantly don’t feel well and it’s having an impact on my well-being. I have hot flushes, heart palpitations, I feel like I’m constantly walking through a fog, both visually but also I just feel like I’m floating. I don’t feel real in a way because I’m always behind this fog. I also get slightly dizzy and sometimes feel like I’m about to faint. My B12 levels are between 350 and 390, I don’t have the results with me but I vaguely remember. I know that they should be higher and I’m supplementing it with tablets. However I just feel really awful all the time and I can’t explain it to anyone because there’s so many symptoms. I have been tested for many different things as well, and everything is coming back clear, except for my liver, which I will continue to get tested. I also have been diagnosed with PCOS recently and one of my hormones is out of whack. I just feel so awful every single day, extreme fatigue, just being in the fog and not being able to concentrate. Also mixing up my words and saying other words instead. I’m slow at thinking, it takes me seconds to come up with sentences. I am here for advice, I’m here for reassurance and I would like your opinion on what could be happening with my thyroid. Do you think all the symptoms can be thyroid related? Always feeling on edge, always walking in fog, tension and pressure headaches, blurry vision, never feeling quite right. I’ve also had itching and restless legs, which I know can also be a sign of hyperthyroidism, but my lab work is okay… I feel very hopeless right now
very long story…. Need support. : Since a young... - Thyroid UK
very long story…. Need support.
I really feel for you Angie10116, as you have had such a tough time with your thyroid at such a young age. So we can offer you better support and advice, please ask your GP for a print out of your both your thyroid blood tests (TSH, FT3, FT4) and key thyroid vitamins (ferritin, folate, B12 and vitamin D) with ranges (as these can vary between laboratories).
I definitely think the symptoms you describe can be thyroid related. Please remember that when medics say results are ‘normal’ or ‘within range’, this may not be optimal for you.
It was only through sharing my blood results, reaching out to others on this forum & following advice given to optimise thyroid medication & key vitamins, that I managed to turn my health around. I, like many members here, had a huge list of adverse symptoms which massively reduced since becoming an advocate for my own health, encouraged by TUK.
thank you very much for your support! I’m sorry that you’ve also struggled, but I’m glad you’re better. I will definitely get some further testing…I’m saving to go to a private endo as my doctors don’t know what they’re doing. Maybe then they can offer different medication also, rather than just generic Levo as I don’t think it’s a good medication. Thank you! Wishing you all the best x
I would 100% suggest you take private blood tests (TSH, FT3 and FT4 plus key thyroid vitamins ferritin, folate, B12 and vit D) and post results on the forum BEFORE considering a private consultation. If needed, you can then book to see an endo (from the TUK list) armed with both comprehensive blood test results and suggestions from forum members.
Thank you so much! I will definitely do that 😄
Remember to ALWAYS test your thyroid early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Many (most?) thyroid patients need to supplement vitamin D, magnesium, vitamin B complex to maintain GOOD vitamin levels
Initially you may need separate B12 as well
Do not start supplements until been tested first
Request GP test vitamin D, folate, B12 and ferritin
Also coeliac blood test
Do you always get same brand of levothyroxine at each prescription
Get yourself a weekly pill dispenser for levothyroxine, then it’s easier to see if missed a dose
Tough to have to deal with all this at such a young age
If you add your actual results and ranges on your post when you get them, members can advise on next steps
Thank you for all the info, I definitely agree with all. My vitamin D was okay, I believe 59nmol/L. Haven’t had magnesium tested, I believe my doctors won’t do it. But I can go privately so I will get everything checked.
Thank you!
Recently, around 2 1/2 months ago I was put on 175 mg (previously being on 125mg)
Was your dose increased by 50 mcg in one go? If so, that was a mistake, but doctors have little idea how to dose thyroid hormone replacement. You should never increase by more than 25 mcg every six weeks minimum. And when your dose gets as high as 125 mcg, it's probably better to increase by even less than that at a time. So, taking your dose up to 175mcg was probably too much for you.
Don't take too much notice of in or out of range, ranges are only a rough guide. How you feel is far more important. Just being any old where within the range is not automatically going to make you well. It's being in the right place within the range FOR YOU, that makes you well. Which is why we have to start thyroid hormone replacement on a low dose and increase very slowly.
My doctor said that maybe it’s because my body is not used to have a normal thyroid hormone levels
All the more reason to increase slowly!
Also, we don't have the complete picture, here because they almost never test the FT3. Levothyroxine (aka levo) is the thyroid hormone T4. T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. T3 is needed by every single cell in your body, and if there's not enough to go round - priorities are the brain and the heart, of course - then you get symptoms. And symptoms can be anywhere and everywhere.
So, we need to know how much T3 you have in your system to be able to say if your symptoms are due to under or over-medication. My guess is that you don't have enough. In other words, you probably don't convert T4 to T3 very well. And, it's possible, that by taking your FT4 up to near the top of the range, it has made your conversion even worse, and that is why you feel worse. But, you need your FT4 and FT3 tested at the same time to know that.
Another thing that is obviously going to make you feel bad is your low nutrient levels.
My B12 levels are between 350 and 390
That is going to make you feel terrible! B12 should be at least over 550. Low B12 symptoms are a lot like hypo symptoms, but also a lot of neurological symptoms. So could explain the dizzyness, brain fog and losing words.
I know that they should be higher and I’m supplementing it with tablets.
But what tablets are you taking? Supplementing nutrients is not as simple as you might think. When trying to raise B12, you should start with sublingula nuggets of methylcobalamin (B12), 1000 mcg. After a week or so, add in a good B complex. The B vits - all 8 of them - work together and need to be kept balanced if you want to get the best out of them. And, by a 'good' B complex I mean one with methylcobalamin (rather than cyanocobalamin) and methylfolate (rather than folic acid).
So, if your B12 was low, you probably also have low ferritin - which would make you very fatigued! - and low vit D. Have they been tested?
Do you think all the symptoms can be thyroid related?
Absolutely they could, both directly and indirectly (i.e. low nutrient levels). However, the problem is that thyroid symptoms are non-specific - which is why so many doctors are able to insist that your symptoms are 'nothing to do with your thyroid!' - but they probably are because, as I said, thyroid hormone is needed all over your body, so symptoms can be anywhere and anything. A further complication is that 'hypo' and 'hyper' symptoms can be the same, there's no rigid dividing line between the two. High blood pressure can be due to both under and over-medication, as can weight-gain and weight-loss, feeling cold and feeling hot, etc. etc. etc. Which is why we need the guidance of blood tests to show us in which direction we're going.
So, to get a clearer picture of why you feel so bad, further testing is needed. There's always hope. 
Thank you for the wonderful reply! Wow, so many good pieces of advice. I appreciate you taking the time to write.
Yes, by 50. I think that’s what they usually do but it’s not good if someone is sensitive. I’ve now been advised to change the 175mg to alternating days (150mg one day and 175mg the next). I hope this lets my body adjust better.
Thank you for the reassurance re b12 levels. Docs say that I should feel fine with those levels but I clearly don’t … I take 1000mg oral tablets. I have heard that other forms are better. Do you have a good brand you could suggest? My folic acid was low aswell. I’m range but low. Doc gave me folic acid tablets but I’ve heard that they’re not always good. I will invest in methylfolate instead. Do you know what dose would be best ?
I agree! The symptoms definitely overlap, even though most websites don’t indicate this.
Thank you for so much help! 😄 x
It is very wrong to increase by 50 mcg levo. It's too much in one go. Obviously your doctor is very ignorant about thyroid.
Thank you for the reassurance re b12 levels. Docs say that I should feel fine with those levels but I clearly don’t … I take 1000mg oral tablets.
Doctors know nothing about nutrition - although they think they do because they're doctors! As a general rule, never, ever take nutritional advice from a doctor. Always check on anything they tell you.
By 'oral tablets', do you mean ones you swallow? Much better if you can avoid it going into the stomach. Sublingual nuggets melt under your tongue and are absorbed directly into the blood. There isn't a huge choice on the market, so as long as it's methylcobalamin, it's fine.
Doctors prescribe folic acid because it's cheap, but it has to be converted into methylfolate in your body, and not everyone is good at that, so best to go directly with methylfolate. Thorne Basic B and Igennus B-complex contain 400 mcg methylfolate, so that would bring up your levels nicely. Doctors have no idea about having to take all the Bs at the same time to keep them balanced. Just taking B12 and folate in isolation won't get you very far.
Great advice from everyone else but can I add that when I went into remission after I had Graves’ disease (no radioactive iodine) I can remember my body feeling ‘odd’ and the discussion on here at the time was that it can take a while for your body to get used to the new normal and that was with all my vitamins and minerals at good levels, so you’ve got a bit to go. Hopefully once you’ve got all your vitamins and minerals to the right level your body will catch up and you’ll feel better.
I always think that by the time you are treated for Graves your system has been really messed up and it takes a while to get back to ‘normal’. So get your vitamins and minerals sorted, get plenty of rest, learn to relax and switch off, sleep, eat well and get some gentle exercise and hopefully you’ll feel a lot better soon.
I’m very glad you’re in remission! A lot of people say that the vitamins are important. I will get them tested, thank you very much for your support 😌
Hi Angie,I'm so sorry you're feeling so awful.
I really hope that you manage to get some answers regarding your symptoms.
I still have a functioning (over functioning) I'm hyperthroid which is caused by Graves disease. I have been trying for a good few years to get my thyroid levels in range. With carbimazole I have recently managed to get my T3 and T4 within range but my tsh has always been 0.02. When I was first diagnosed I took high dose vitamin D as I wasn't even on the range for Vit D. I wanted to try that rather than carbimazole. It actually improved my readings but for some reason I stopped taking it ( I too get out of the habit of taking pills).
My thyroid went haywire again and I went on carbimazole 30mg which has now been for around a year. A few weeks ago the doc reduced my dose to 20 which I am staying on and reviewing early next year.
Since taking the higher dose carb I have felt better bit I have also experienced most of what you say you're experiencing. This was when my thyroid was haywire. I know you are hypothyroid now but a think some of the symptoms are the same and some different when levels are not right for us.
I have decided to try and keep my thyroid for now but worry about the long term effects of carbimazole. I have felt much better giving up wheat and dairy though not sure if that helps everyone.
I have heard that some herbs alleviate symptoms for hyperthyroid but I'm sorry I don't know much about hypothyroid other than iodine replacement might be necessary.
I am also menopausal and if as you say your hormones are out of balance this could actually be the reason why you're feeling so bad. It is worth finding out what is going on with your hormones and reading up on symptoms when you know more. You can get your hormone levels checked and believe me hormones put of balance create all sorts of awful symptoms.
Good luck to you ...I really hope you find some answers and get some relief.
J
I was treated with block and replace and every time I needed an increase of levothyroxine I got hyper symptoms again. First time it happened I thought I was becoming hyper again but someone on here said I was probably needing more levo which I was. Graves is a very annoying condition!
Hi Jayne! Thank you for sharing. Apologies that you’ve been through so much! I’m glad you feel better. It’s crazy that such small dose changes can affect us so much, right? Thank you! 😃
Hello Angie and welcome to the forum :
Being hyperthyroid can ravage the body both physically, mentally and emotionally and it will take time to rebuild your body's core strength and your well being :
The RAI works by slowly burning out your thyroid in situ and this can take from weeks to months since the dose of RAI not as exacting as you might think and the rate at which it is absorbed and disables your thyroid is pretty much a guess as it can take just weeks or several months.
RAI is known to trash vitamins and minerals and we do know that we need to have optimal ferritin, folate, B12 and vitamin D in order for the T4 - Levothyroxine to work well in the body - to enable it to convert well into T3 and provide you with energy to run your body and relieve the symptoms of hypothyroidism as you describe above.
We do need to see current Free T3 and Free T4 readings and ranges along with your antibodies, inflammation and ferritin, folate, B12 and vitamin D to help you further improve your health issues.
Plase ensue you take the T4 on a empty stomach and wait around an hour before eating or drinking anything.
T4 is a storge hormone so on the day of any blood thyroid test arrange an early morning blood test, having fasted over night and not had breakfast and do not take your T4 on the day of the blood draw until after you have had your blood taken by the nurse - you will be ok - do not worry -
Please give yourself time to rest - remember tortoise / hare - slow and steady wins the race - if your doctor can also run the vitamins and minerals stop any supplements for the week beforehand so we measure what yor body is holding onto as opposed to what you have just ingested.
You might like to read around Graves Disease - elaine-moore.com
Thank you so much for the advise. I will definitely get all those tests and will post them on here, and go from there! Thank you for the advise 😄
Hi Angie - when I was over-medicated with Carb and became hypo after years of being hyper, I had exactly the same symptoms. It was awful as you know! I can adjust carb dose and feel well at the mo but as you've had the radioactive treatment you will prob always need some thyroxine. But you need to (a) be regularly monitored and (b) learn how to adjust your dose until you feel OK. I am post-menopausal but you will have monthly hormonal fluctuations. I also take oestrogen suppressants after breast cancer and that was when my problems started. Our endocrine system is complicated and finely balanced. Only you know the dose at which you feel well and for many people that means T4 at the highest end of normal. Good luck 🤗
Hi! I’m so sorry to hear that… May I ask, did you also feel a sense of unreality when you weren’t feeling well? That’s the most scary symptom for me. I’m so sorry that you have all these hormonal issues and that you had breast cancer, I wish you all of the best 😄
hi Angie … sorry to read your struggle and think all above advice is great. If your b12 is low (which would be considered in range but not great for you) the Nice Guidelines state treat with b12 injections every other day until Improvement. Oral b12 is not going to be absorbed if pernicious anaemia… see pernicious anaemia site on Healthunlocked and on Google
Good luck in this minefield but you will find great advice and knowledge
Thank you! I’ve been tested for pernicious anemia and thankfully all clear! Unfortunately I don’t have injections and don’t feel confident doing them myself… I hope the supplements help!
Thank you for your support. I appreciate your time and kind words! 😀
Hi Angie … the test for PA is not always correct (this you will see on this site) and if patient is symptomatic the NICE guidelines are to trial treat with injections. It wouldn’t hurt your GO to trial this - as b12 not toxic and what’s not needed by body is excreted. Just a thought as a lot of your symptoms look similar. See YouTube Sally Patchalock b12 film …. Good luck
Thank you! That’s interesting. I had injections 2 years ago, bringing my levels from around 270 to over 800. But since then it’s dropped again which is odd!
Maybe look and ask some questions on pernicious anaemia site here too …. Great support - even some of the same members as the symptoms are similar so we’re all digging around for similar information. I have both so have interest in both. Once on long term injections it’s not considered necessary to keep testing as results usually show high vitamin b12 levels so most professionals then say stop supplementing when in fact you need to continue. But interesting if your levels dropped back - again possibly indicating malabsorption via gut /stomach - no intrinsic factor … more food for thought …. You’ll find the PA hub in the search … Pernicious Anaemia Society
Xx
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