Feeling scared :(

Sorry to post this but I'm at home crying on my own feeling very afraid.

I've been on 25mg thyroxine for almost 5 weeks. My tsh had been rising for a yest. Last month it was 9.28. (0.27-4.2) and ft4 15.7 (12-22). My gp finally agreed to try thyroxine, reluctantly.

I've been feeling much brighter and far less crash days. Throughout this I've had awful cfs type crashes where I feel drained and weak. It was what led me to the gp and he ran bloods last summer. The crashes had gone from almost every day to just 1 day a week maybe but in the last 2 weeks I'd not crashed and felt great. I'd gone vegan and felt so good. I was so happy. I felt exhausted Monday and was very anxious all day because I was scared I was crashing again. It passed and yesterday I felt good. Silly me I did alot; hoovering all the house plus lots of other housework. I felt tired last night so settled early. I woke just before 7am today and felt heavy in my eyes and tired. I know when I wake like that it'll be a tired day. I had a shower then afterwards felt very weak all over and felt faint. Whether it was anxiety as I suffer terribly since being poorly; I don't know but I felt weak all over, and felt my head all woozy and like I'd faint my mouth was so dry too so I lay on my bed drinking water and let it pass. My heart started racing and I felt adrenaline pumping. I was terrified. It could have been anxiety but I was so scared I was going to faint as I felt so weak and thirsty. I then knew I had to take the children to school and couldn't stop crying.

We've booked a caravan holiday for next week with the kids. Not far from home. I wasn't going to let them down and since feeling better thought I'd do it ok as long as I rest when possible. Well this morning sent me into panic and I've not stopped crying since. Terrified I won't be able to take them on Monday, scared that this wasn't an anxiety attack and will I end up in hospital, will I have to see gp ..... loads of frightening what if thoughts. Plus I'm agoraphobic since being ill but recently been working on it and getting out and about more but I still am terrified of needing to go the doctors or hospital. My hubby thinks thsts why I felt so bad this morning as I panicked but I never panic like that these days, I only usually panic if I feel weak and poorly which I've not felt for a while. So I'm feeling afraid of how I felt this morning. I still feel weak in my body and afraid, my anxiety is running rife afraid I'm ill. I'm at home resting and can't stop crying. Scared of what that was and whether I will let my children down next week. I was so excited for the holiday, we all deserve a break so much after all we've been through these last 7 months and nor this happens and sparks my anxiety again just when I felt hopeful life was getting easier.

I'm very anxious so I'm sorry I've posted. I'm just sobbing. I don't have a mum to call or family as I don't see them so I'm very upset crying by myself.

No need to reply maybe I just had to get this out of my head.

Julie

28 Replies

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  • I'm very sorry jingyd35 you are feeling so very unwell. It is no surprise to me that you are feeling so awful and scared.

    Your dose of levothyroxine (unless you are very frail with a heart disease) is far too low to compensate for a dysfunctioning thyroid gland.

    You should have been started on 50mcg and 25mcg added to it around six weeks later.

    Phone today your surgery and make an appointment for the very earliest possible blood test for your thyroid hormones. Tell your GP how terrible you are feeling and believe it is the result of not having sufficient thyroid hormone replacement to drive your metabolism and you need sufficient especially for your heart to work efficiently. It is also a slow process, i.e. usually 50mcg starting dose, and 25mcg increments of levo every six weeks approx till you feel well with a TSH of around 1. It would appear your GP is not knowledgeable about treating someone who has hypothyroidism. He might well imagine that once your TSH reaches anywhere in the range that's a proper dose. We need a TSH of around 1 or lower.

    The earliest blood test should be taken without eating but you can drink water. Also do not take levo before it but afterwards (allow about 24 hours gap between the last dose and the test).

    Also after levo don't eat for about 1 hour to allow your stomach to absorb the hormones.

    If he's not tested B12, Vit D, iron, ferritin and folate ask for these to be done.

    I hope you feel better soon but the medical profession for some unknown reason to me don't understand how thyroid hormones work or how they raise our metabolism.

  • Just to say, don't be afraid of all these new strange sensations. It's due to the lack of thyroid hormones which are required by the billions of receptor cells in our bodies. Once you gradually have reasonable doses prescribed your body should feel the benefit and it is struggling badly at present. Let's hope your GP is sensible and cross my fingers he is :)

  • Thank you for your reply it was reassuring.

    I've been feeling fine on 25mg I suddenly just feel bad again which is scaring me.

    My gp was even reluctant to prescribe after my last blood test. He said normally you'd not be symptomatic until tsh is over 10. He said my ft4 was good hence why he was worried about giving me levo. In the end he agreed to a trial and gave me 25mg he said he would test me in 8 weeks. I have my tests done private with blue horizon so I'm having it done the week after next once my holiday is over. Then it'll be 6 weeks since I started thyroxine. I always test about 7am fasted.

    My b12 was low last August at 212, gp didn't treat it so I supplemented and last test in March it was up to 477. Folate is fine, it was actually about 40 so over what it should be but I'd been taking 2 vitamin supplements that both contained folic acid. My ferritin has been low for over 10 years. It was 15 last August and inot March was 34. I'm supplementing myself as I can't stomach iron tablets.

    My antibodies both times have been normal so my gp, and the second gp I tried both said without antibodies it was unlikely hypothyroidism. Another reason he didn't want to treat me.

    My anxiety runs rife when I feel like this. I'm terrified of fainting and ending up in hospital. Now I'm anxious about my holiday and lost my positive head. 😢

    Thank you for replying to me.

  • Jingy, I've said again and again, your doctors are absolute idiots and know nothing about thyroid! You can be symptomatic with a TSH at 2! It's so stupid to believe that you don't have any symptoms, and then suddenly when TSH hits 10, oh! you have lots of symptoms! It just doesn't work like that. But your doctors are too moronic to understand.

    All your symptoms - the anxiety, the agoraphobia, the fatigue - they're all due to low thyroid hormones. I promise you. Been there, done that. Got better. And, so will you. But, it takes time.

    Anyway, let that be a lesson to you! lol Just because you feel better, doesn't mean you can go and over-do it. You always pay the price in the end. But, take care of yourself, rest, and no more hoovering, and I'm sure you'll feel better to go on holiday next week. You've got time to recover. The worst thing you can do is panic. Just breath deeply and close your eyes. Panicking just makes everything ten times worse. And, you know what? Laughter is the best medicine, in some ways. Watch a funny film. Get your husband to tell you some funny jokes. It will ease the tension and make you feel better! Chin up! :) x

  • Aww thank you so much. Your reply made me feel much better.

    It's been a horrible day. My hubby totally agrees with you he said tonight 'Julie as soon as you feel a bit brighter you go hoovering, mopping, ironing... and you make yourself ill. Rest and I can do the heavier housework at night'. He's a sweetheart and I'm lucky to have him.

    I think today I felt that weakness and panicked without even realising it. I panicked as soon as I felt it and felt I'd faint but I took my bp straight away and it was 130/85 so totally the opposite of how it would be if I was feeling faint. All day I've cried, felt scared I need to see the doctor, scared of collapsing and ending up in hospital, fearing I'm as poorly as I was a few months ago....you name it I've feared it today. It's made me feel more anxious and more sick. I've been dashing to the toilet all day with an upset tummy, feeling sick... full on anxiety. No fast heart or shaking but all the other symptoms so my hubby and friend both said they think all of today is I was in a crash day, I panicked without realising it and since have worried what it was making myself feel worse. It's true I have because I get scared how do I know it's just anxiety or just a crash, and because of my agoraphobia I panic needing to see my gp or hospital. Argh silly brain.

    Thank you for your kind words. It meant alot to me.

    Julie

  • Oh, Julie, you are so lucky to have a husband like that! If I were the type to get jealous, I would! lol Give him a big hug from me. And one for you, of course! :D

  • Hehe. I will. He is an absolute star. We've been married 15 years and he still will do anything for me. God knows why through all my ill health and I've had an anxiety disorder for 4 years since my brother attacked me. My hubby has never left my side and tells me I look lovely even today and I've cried all day haha!!!

    So in my shoes would you see a gp or just put it down to a crash day? Yes I'm reassurance seeking 😅

  • I would just put it down to over-doing things, and get a good nights sleep. Then, see how you feel in the morning. You've used up your tiny amount of T3, and are having a difficult time replacing it. Low T3 makes you feel bad in so many ways. But, when it comes up again, you'll feel better.

  • Thank you.

    My husband sad all the gp will do is check bp and pulse then blame anxiety and a crash. I just don't have the energy in me to go right now unless it's absolutely necessary.

    My ft3 was 5.3 I think in May. Range is about 3.1-6.8.

    Thank you.

  • I will repeat what Greygoose has said - your doctor is an idiot - they are completely untrained in the basic endocrinology re thyroid hormones and their necessity to be optimum to run our whole body, i.e. from brain (which contains the most T3 receptor cells , heart next I believe and everything else). We've billions of T3 receptor cells. T4, levothyroxine converts to T3, but sometimes doesn't do so efficiently for some of us.

    Some people have terrible symptoms with a TSH of 3 and over but are ignored as the medical profession don't know any and there are over 300+ so should at least know the basic ones.

    If we've to get well, feel well and normal and enegetic ( I decorated a room a few months ago) we have to read and learn and ask questions (not from the doctors obviously) :) . The sensations when trying to get to an optimum dose can be awful but when we know they're caused by lack of hormones, it makes more sense to us and they should resolve.

    I've got a good husband too and he was forever phoning ambulance when my heart sped up, usually middle of night when I was on levo. I haven't had to call any since adding T3 and now taking T3 only.

  • Just to add to what Shaws already said, every time I increased my levo I would feel good for a couple of weeks and then 'crash' again when I was ready for another raise so that is normal. Keep pestering your GP x

  • Thank you. I'm having my blood test in 2 weeks so I shall then demand an increase x

  • Have you had your vitamin D level tested? This can also be low with thyroid issues.

    Blue Horizon can do that too, if GP wont.

    Are you still taking B12 supplement? 447 doesn't sound very high - what was the range?

  • No I've bit had vitamin d tested but I've been supplementing it just in case at 2000ug a day.

    B12 i started 1000ug a day earliee this year but now i take 2000ug I think the range was 170-900 here. It was 212 then 477 in March.

  • B12 is usually measured in mcg, not ug. And I don't think 2000 was enough. With a B12 of 212, I would have taken at least 5000.

    Retesting when you've been supplementing will give you false results. But, even if 477 is the true result, it's still much too low. So, if I were you, I would go up to 5000 for a couple of months, and then drop to a maintenance dose of 1000 for the future. Low B12 can do terrible, terrible things to you, so better safe than sorry.

  • Ops sorry yes I take 2 1000mg tablets a day. I guess it's safe to up to 3000 then.

    So when you have bloods done for b12 if you supplement it's not a true result? I'm not sure why that is. I assumed like if you take iron it I creases it in the body.

  • I'm not terribly sure how it works, but you'll only be measuring what you've just taken. There is a test to measure what's in the cells - the active B12 test - but, I believe, even that has it's limitations. Some things are just difficult to test for, like magnesium.

    You cannot over-dose on B12, because excess is excreted in the urine. So, as I said, better safe than sorry, next time you buy them, get the 5000 tablets, and take them until you finish the bottle, then you can go down in dose again.

  • ug (pronounced 'myou g) and mcg are one and the same measurement x

  • Yes, but most people are used to seeing mcg and will be confused by ug (written µg). Best to keep to measurements that people are used to. It's confusing enough as it is. x

  • It's a pity most people on this forum are more up-to-date than doctors - in fact is more than a pity as so many patients are left hanging high and dry and told it's nothing to do with their thyroid gland. I pity them if they've not got an internet.k

    This will enlighten you and your GP should you wish to give him a copy. In fact we can be very hypothyroid with a low TSH regardless of what he says about not having symptoms until the TSH is 10 (what a fairy story but the fact is that they believe this). Also the commonest thyroid disease is hashimoto's an Autoimmune Thyroid Disease which has the antibodies. For others, me included, with simple hypothyroidism we have no antibodies. They are very uneducated with regard to anything thyroid gland wise. Nevertheless, with this forum we can get well despite the 'guidelines' doctors go by.

    thyroiduk.org.uk/tuk/testin...

    You can be hypothyroid with a normal TSH of between 1 and 2 but no hope of replacement hormones. :)

  • Thank you.

    Both gp's seemed to think if my antibodies were normal then I couldn't be hypothyroid. I had to educate my gp.

    Also he thinks as my ft4 is normal then I can't be hypothyroid either. But no explanation of why my tsh is so high and why I've been symptomatic.

    I am still pretty anxious. I've cried most of the day from my bedroom. It's been months since I felt this poorly and I was so much better recently. My anxiety is making me worry I need to see my gp before my holiday next week but then as my husband said what will he do? Very little. He will just blame anxiety which most of this is as I panicked at feeling so fatigued and weak this morning.

  • All of these are some of the symptoms and I'll give you a link for more:

    anxiety, insomnia, depression.

    thyroiduk.org.uk/tuk/about_...

    All should be resolved when an optimum is reached. Doctors are apt to prescribe something else for the symptom rather than an optimum dose of thyroid hormones.

    We learn as we go along. :)

  • I did show him that a few months ago and ticked off about half 😀

  • No wonder you feel awful as you are in the beginning of the journey to get better and it makes you very fragile and scared thinking what if. On top of that you really want to make your kids happy , you are under a pressure while your medication is not enough for you, it's not a good combination.

    Your "brain" is not rewired properly, meaning when I found out I had antibodies a year ago I didnt know what to think, but during this year it has made me finally feel more safe and secure as I finally found out what is wrong with me. Before I would stay home feeling dizzy and sick and didnt dare to go anywhere, but now I am less anxious about it and I do try to live as normally as possible no matter how ill I feel. I have slowly learned to understand it wasnt up to me what my body does, it does what it does because it is physical illness. I am still not medicated, but have gone so far just with the knowledge and I feel very bitter about I was not given this information earlier, just told its in my head, so I know how you feel. Many of us knows how it is.

    Eventually you will get over the fear too, not just because you are optimally medicated, but you just get your confidence back :)

    Then you can be proud of yourself not giving in and demanding for better treatment!

    I am sorry you don't have anyone to call, but you have all of us here and we always listen!

  • Aww thank you. I felt so lost today. Since this morning I've felt so anxious, I've had an upset tummy, felt weak and drained. I cried for 6 hours straight and gave myself a headache.

    I can relate. The first 6 months of this I became agoraphobic. Terrified of going anywhere feeling so fatigued and weak. I'm now accepting it and I go out alot more. I go to shops with hubby and the kids, walks.... and my anxiety was coming down. Then today I woke in a crash and since I've felt all that fear and anxiety again.

    I cried to my husband this afternoon on the phone and he said I don't need to see the gp. There is nothing to fear but me being me I am terrified after this morning and scared of going on holiday incase I feel ill like today while there. My husband says I will be fine and can rest as much as needed bit I'm scared. I was doing so well and had 2 very good weeks then this happened. Now I am scared of the holiday instead of excited.

    I'm glad to hear you're improving anxiety wise. Can I ask why they won't treat you?

    Thank you for your support. I'm so thankful for everyone here.

  • Have no idea why I am refused to get treatment :/ they don't seem to see how weak I am because I refuse to lay down. I go on with pure will power.

    Your husband is right, nothing bad will happen but I do know how hard it is to go when feeling awful or being scared of feeling awful. If you get to rest then it is not likely you would crash so bad! Maybe having a holiday would reduce the stress and anxiety.

    If your biggest fear is to end up in hospital you are not safe anywhere if you get my point. Staying home doesn't make a difference if you get so ill.

    But very positive you hear you have had good days. Eventually you have more of them :)

    I hope you can go and spend some quality time with your family without worries.

  • Thank you Justine.

    I'm sorry they won't treat you thsts terrible. How is your tsh and ft4?

  • My poor TSH doesnt understand to rise even tho my T4 is now dropping and T3 has been on the floor level for long time lol.

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