I've posted my results here before and been super grateful for the responses, thank you. I don't really understand what I'm going through at the moment. I had TT (June 2013) for presumed TC which turned out to be an Hylanizing Trabecular Adenoma (extremely rare and I realise I should be happy it wasn't TC - and I am but it isn't helping the way I feel). Mostly I feel like a fraud but these are real feelings; I feel anxious and cry a lot. Latest results I have are
TSH 1.21 (0.4-5)
FT4 15.5 ( 10-23)
T3 (3.5-6.5)
Have had more blood tests recently that have tested perimenopausal symptoms - but apparently I'm not (awaiting results in writing) and all my vitamins, minerals etc have come back normal (again awaiting in writing)
I'm 5'9" and approx 11 stone (not sure if thats relevant but regularly asked my height and weight).
My endocrinologist called on saturday after I'd left a message for her during the week - she has decided I should reduce my levo from 100/125 to 100 and see if that reduces my anxiety. She also said that this maybe a feeling I need to learn to cope with - I'm really scared because I genuinely don't think I can learn to cope with feeling like this
I really don't know what to do with myself, I only sleep if I take sleeping tablets and have gone from being a social butterfly to not wanting to make any plans at all - and when I do on the majority of occasions I just want to go home. My Mum has just been to visit and all I did was snap at her or cry (I'm 41 - I don't understand why I feel so wound up and thoroughly twisted).
Please does anyone have any good ideas about what I can do. My GP today just kept asking what else was bothering me - I've always been able to deal with any stress thrown at me, so struggling to understand what's different!?!
I'm so grateful in advance for anybody with any good ideas, thoughts and indeed questions.
xx
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Nicnak
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My levels previously (all that my GP could tell me today) were
05/02/13 - TSH 0.99
FT4 - 13.9
21/10/11 - TSH - 0.62
FT4 - 14.9
I had my folate/ferritin/b12 tested on 25/02/14 but don't have those results written back to me yet - my endo told me on saturday that my folate levels are higher than she would expect but thinks that is probably because I am taking more than I need. Does that make sense?
Not surprised you feel anxious. You have been really ill and then you had your thyroid removed, what a shock to your system, the stress you were under while all that happened must have been awful and ok you haven't got TC but a Hylanizing Trabecular Adenoma (must go and look that up) doesn't exactly sound like a lot of fun. Then add to that you are maybe not quite at the right place with your levo. at the moment.
Have you actually seen your test results along with their ranges? You might be within the range but not at the right place for you. You might have just crept into the range and no more or you might be right at the top of the range when you would be better lower down.
I was really anxious before I was diagnosed as hyper, it is one of the symptoms of Graves Disease and it was not nice at all, but when I was let to get hypo I felt really awful too, in fact hypo was every bit as bad but just in a different way. Could you manage to do any sort of exercise like swimming or walking or even yoga that would help you relax? Maybe it is because you have always been able to cope with anything that has been thrown at you in the past that you are finding this illness overwhelming.
You have to be really kind to yourself and get as much rest as you can - what about a nice aromatherapy massage to help you feel more relaxed - with oils that would help your anxiety. There is also Dr Bach's Rescue Remedy, that is very good for stress and anxiety, you can get it in any supermarket or pharmacy.
I'm sure your mum will understand why you were grouchy and as a mum myself I bet she is quite worried about you even if she doesn't show it. Mothers Day is coming up tell her you love her.
Thank you! I'm sure my Mum understands too, but I struggle with the way I am behaving! It's like being a hormonal teenager all over again!!
I have recently gone back to exercising although not particularly calming and soothing as I go to Zumba, I find that it makes me giggle (3 left feet does that) and it helps a little, maybe the more I go the more it will help.
I have notes of all my results, with the exception of the most recent ones but my endo said she will send them too me as she knows I like to have them so I can see where I'm at. I don't think I'm optimal yet and will see what reducing my Levo does. It just seems like a constant battle that I don't feel like I'm winning
The responses and kind words that I've had on here do help though so I'm taking heart from that.
I had ThyCa and it was helluva shock. Being told you have it and then you don't AFTER you thyroid is removed is just as traumatic, IMO.
If your anxiety is medication related, ie you are not yet stable and on an optimal dose for you, then your endo is wrong to say you must learn to live with anxiety. She must help optimise your medication whether that be Levothyroxine, T3 or NDT and treat your symptoms and not just your TSH.
If the reduction in meds doesn't ease your anxiety it may be the trauma of the cancer diagnosis triggered and your GP needs to prescribe anti-anxiety medication and perhaps a referral for CBT or other therapy.
You can sometimes find that you need the addition of T3 and or natural thyroid like Armour to help with emotional symptoms. I too have run the gauntlet of anxiety/depression and Armour was amazing for me. It's unlikely that your endo will give you that however as its unlicensed in the UK, but approved by the FDA and used on other countries, we are a bit behind on that....you can purchase it yourself though.
Its also worth thinking about your adrenal health. Again something the endo wont help you with....so its worth looking up some of these things either through TPA or various books by physicians like Dr Peatfiled. Made a huge difference to my health...and no, I couldnt live with feeling anxious either. I'm in premenopause so this has thrown things again....wishing you the best! x
Thank you for your recommendations - I will look into those books as I am finding my lack of understanding of what I'm going through quite debilitating in itself.
I'm sorry that you have been thrown again by peri menopause - a joy that awaits me and was an avenue I explored but am not experiencing yet. Wish you well too and thank you again x
Lots of really good advice on here, look at diet as well in terms of ditching caffeine and sugar for a while until you feel calmer.... chicken, turkey and potatoes have calming effect. For me a peaceful walk in the countryside (with a friend if you feel anxious) is blissful and having a really good massage is brilliant, also found acupuncture helped and my dogs - so easy, so lovely, so make me laugh....
Thanks Tilly, I've been caffeine free for 9 years now but will explore ditching sugar too...my youngest sister is a dietician so I will explore the options with her. Not something we've done thus far but something we'll look at. My Physio has just recommended trying acupuncture so I am going to give that a go too! And you're right great advice and very kind and generous people which also really helps.
I often feel worst anxiety-wise when I reduce my t4. See how you feel on a lower dose if your endo insists but you may feel better on a bit more as your tsh seems to be rising.
Just a thought but propanolol will help as a short-term experiment if you're overmedicated without having to reduce t4 over time. I know it is frowned upon here but if you were to take it once or twice to see if it helps you might get an idea of whether you're on too much or too little levo. A couple of times when I've gone a little hyper I've taken just a quarter of a tablet to help with palps.
Have you taken your pulse and temperature to see if they're elevated?
I haven't taken my pulse or temperature, will do both. Regularly have my BP checked and incredibly even when I am at my most anxious and very tearful it remains the same...normal!! I will give the reduction in Levo a go but agree my TSH is increasing so I'm not so sure either - my endo suggested maybe I'd be better at the top end of Hypo rather than the bottom end of Hyper?! I'll try anything because I can't cope with these feelings.
Thank you so much for your reply and suggestions x
I think that's good news, that you don't have high bp. TUK says "The blood pressure will be revealing too: the upper (systolic) value will be unusually widely separated from the lower (diastolic) value." Just something to look for.
Your pulse and temp may be elevated if you're overmedicated. Did they do a t3 test? I see in your post you have the range but no result.
Try to take it one day at a time, because you will find the right level and typo of meds to suit you and the anxiety may just disappear. xx
Am keeping my fingers crossed for the disappearance of anxiety...it's such an awful feeling.
I saw my Physio this evening and she has suggested trying acupuncture, so I am going to look into that too - I figure it may help and I've plenty to gain from trying.
That is very low. It is barely within range. No wonder you feel ill.
I don't understand why your doc thinks you're hyper - ? Hyper would be a high t3 and possible a very low tsh, under the range. Your t3 is just touching the bottom end of the range.
Your t3 and t4 are low and middling respectively. Even if doc was going on tsh, your tsh isn't even low. It looks to me like you need more medicine and/or maybe a little t3 to help you feel better.
If you agree to reduce meds, please get some clear boundaries on for how long, when you will know when it's time to stop. Sometimes people get talked into reducing and even though they feel worse doc refuses to raise again.
I'm not a doctor, and maybe someone else will weigh in here and correct me, but I don't think you need a lower dose.
I couldn't cope on T4 even after reducing from 200mcg to 100mcg. The palpitations and racing heart crippled me and I won't start on all the other symptoms.
The addition of 25mcg Liothyronine (T3) made all the difference, calming the effects caused by T4. I take both together in one dose before bed.
It is often said that TT patients do better with the addition of some T3. The brain is a gross user of T3 so the lack of might also be contributing to your anxiety. T3 was originally used to treat depression 50 years ago and is being used again to supplement SSRIs in cases of AD resistant depression.
Just seen your FT3 is only 3.8 and as Punctured says that is very low. Please shake your endo by the throat until she prescribes 20mcg T3 in addition to your current dose of T4. I feel sure that will make a big difference.
I got horrendous anxiety and panic attacks when my levo was raised from 100 to 125 and I became a weeping nervous wreck. It completely tipped me over the edge and I turned into a person that I did not recognise. I ended up abandoning all levo and then very slowly reintroduced it back until after a few months I finally reached 100 again which is what I have been on ever since and which I feel normal on. Fortunately, my GP has accepted that I know best how I feel and I don't ever want to go back to the Endocrinology Dept of my local hospital.
You have had an awful lot going on in your life which hasn't helped but it does sound as if something is out of balance and you need your med levels reviewed and blood tests - maybe you could suggest to your GP that you do a short trial (a month or two?) on a lower dose of levo or whatever just to see what happens. And if at the end of the trial there is an improvement then that's great but equally, if it is inconclusive or not helpful, then point out to the GP that that would still be useful knowledge to have in order for you and him to plan any other suggested treatment(s).
I'm still under the hospital and have a review every three months as they aren't happy that I've found the right balance, so have agreed with my endo - who called me on Saturday - that I will drop my dose until my next appt in 2 months, fingers crossed I'll see a change as anxiety and tears aren't good!
Thank you very much for your reply, I don't like to hear that other people struggle too, but it really does help to know that I'm not on my own and equally that others, such as yourself have reached a plateau x
Sorry, I just replied above before I saw this reply. Do you know why they're dropping your dose? Your t3 is on the ground. You may want to ask them to commit to raising the dose if you feel worse on less levo so you don't get lost in no man's land on too low a dose. x
Hiya, sorry you are feeling so bad, like yourself I suffer from severe anxiety and have done since childhood but in the last few weeks have started with major panic attacks again and had to go back on propanolol which I know is not good with thyroid probe but I self-harm when panicked so it is safer to take it. What is really upsetting is that on this occasion it was triggered by something I really wanted to do (I go to riding for the Disabled a d I was offered the chance of a private lesson with the trainer for the Irish Paralympic equestrian team which was a huge honour). Since I did the lesson I have been panicking about leaving the house again, including bursting into tears when I was due to go to the theatre with OH, sister and niece 'cos I didn't know what to wear! STUPID!
Don't really know what to advise you but just wanted you to know you aren't alone.
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How to deal with TSH obsessed doctors...?
Collective nouns for endocrinologists... and how do I manage the endo man? 
Lost
I feel like I'm loosing it! Thyroid?!
