Post thyroidectomy in June 12 (for Graves which did not respond well to meds). I take 112.5mcg per day levothyroxine and 10mcg of liothyronine(T3) 3x per day. The rest of the time I feel vaguely human, at least better than on lower doses/ T4 alone (on lower doses was depressed, weight gain, everlasting periods etc). Last blood test results April 13 FT4 16.4 (range 12-23) FT3 5.1(range 4-7.8) TSH 0.01 at which point the endo discharged me. Weight is now stable if I am sensible, still feel sad at times. The biggest difficulty is I don't seem to be able to cope with stressful situations at all, yet there are a number of stressful situations in my life at the moment. Previously I felt strong, assertive and capable; now stressful situations turn me into a sobbing jelly. I have thrown up on 2 occasions following stressful situations recently and under stress my heart seems to go disproportionately fast and sometimes jumpy. It sits at about 70 beats per minute the rest of the time.
For example my stress response today -my mother has been in hospital for 2 weeks, without treatment apart from pain meds. Rude doctor gave us 1 minute, despite me waiting 5 hours to see him. I sobbed for an hour (previously I would have sorted it out without becoming an emotional wreck)- my poor mum. Went to patient liaison cried again. Despite putting £8 in car park machine over the day missed the time cos waiting for another doc who said 10 mins, but left us waiting for 1.5 hours - got a parking ticket, sobbed uncontrollably at reception, at security and on the way to the car park at the other side of the hospital. This is so not like me. Felt sick, and weak on the way home, threw up several times on arrival, heart felt it was looping the loop; had to lay down for an hour as I felt so unwell.
Also craving salt which I don't normally like and have avoided for years and carby sweet things in the evening (not that hungry in the day) Finding it hard to sleep at night and to get up in morning. In pain awaiting surgery myself. Extremely worried about coping with work when I go back as I have a stressful, demanding job and a team to manage (loved it before).
My body seems to have developed an over-reaction to even simple 'not very stressful' stress.
Spoke to my doc about tears last month (but hadn't clicked it was stress that was the trigger at that point) he said I needed to be more liberal with my pain meds especially amitriptyline which would help with my mood. I don't want to take more pain tablets and increasing amitriptyline hasn't made any difference.
Any ideas/ advice gratefully received as not sure where to go from here. Under/ over (feels different to when I was hyper)or something else?
Many thanks
S
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sandywandy1
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You should not suddenly stop taking this medicine, as this can cause withdrawal symptoms such as nausea, vomiting, loss of appetite, headache, giddiness, chills, insomnia, restlessness or anxiety.
I think any rational human being would have reacted as you did on that day and even more so as you have been so poorly. It is normal to get upset over waiting for doctors, ill parent, a car parking ticket and it's exacerbated trying to come to terms with having a serious illness and symptoms. You are still that same person inside, honestly it is circumstances and it really will help if you can manage to do some good things for yourself. See a friend who makes you laugh. Try acupuncture, I go once a month and it's wonderful. I also have a monthly massage - proper therapeutic one not from beauty salon and do yoga. I would recommend counselling while you feel so distressed, if you are around Bristol area I can recommend a wonderful woman who has thryoid issues. xxxxxxxx
You sound like me when my T3 was too low on Levo thyroxine. I had my Levo increased, and felt better for a while, but then the racing heart and all the other stuff came back again. I am now on various things to address the problems which were caused by being on Levothyroxine.
Your craving for salt could suggest that your adrenals are not meeting the demand placed on them.
What nearly all GPs and a huge number of endos do not seem to understand is that a person who has no thyroid frequently finds that he/she is not converting the T4 into T3. What is happening is that over time the strain on your body's resources is so great that it can no longer meet the demands of your physical and emotional needs. It has even been observed that the lower the TSH goes, the less efficiently conversion becomes.
Is this so in your case? Well, take a look at those figures you quote. TSH IS low, 0.01. FT4 is 16.4 in a range of 12-23 so it is by NO means high. Your FT3 is 5.1 in a range of 4-7.8 so again it is not particularly high, considering that you are taking 30mcg of T3 as well! That suggests that you are not utilising the Levothyroxine at all, or only a tiny bit. In other words, it's rumbling around your system doing almost nothing - except maybe causing you pain and emotional distress plus making you slightly toxic. It also means that your adrenals are trying to make up for your low T3 by sending out extra adrenaline and noradrenaline plus cortisol to give you the energy you need - with the resulting emotional roller coaster, and eventual adrenal exhaustion. The Amitriptyline can make the ups and downs worse.
May I make a suggestion? If you have a blood pressure monitor (you can get one from Boots - you don't need the complicated ones with 14 memories and so on) - than you can take your blood pressure sitting down and then take it after standing up. If it falls instead of rising, that would suggest, coupled with the salt craving, that your adrenals are struggling.
If it turns out to be the case, this will not be addressed by any GP and the main tests which an endo would do is a test for Addison's disease, which is the extreme form of adrenal failure, because many do not take into account the balance between the thyroid function and the adrenal hormones. You may find that you need go privately to see someone like Dr BDP who can help you as he is an adrenal and thyroid specialist. If you think you might be able to do this, send me a PM and I will give you some details.
I am sure that many of the suggestions made by tilly83 are very good - once your hormones are right. But please do not be thinking that this is all just in your mind.
I have suffered like you and the information I have given you comes from Dr BDP.
I can sympathise but can only say in my case that this has got better.
Ten years ago I had a little flood in the house, dealt with it as you do then continued to feel stressed for four days - like the shock never wore off. In my head I knew there was no sense to how my body was reacting but I could not calm it.
Fast forward to last Sunday. Am walking back home and am a half mile from my very little street when I see two fire engines and several police cars turn into it - to say I had an adrenaline surge was an understatement. Legs like jelly I walked the rest of the way and, of course, it was a malicious hoax thank goodness. Was really scared I'd be stuck stressed for days but no an hour later was back to normal!!
I think it is better now because I'm on thyroid hormone and am taking NDT but can't be sure it is just that. I was discharged from Endo with similar results to yours when taking T4/T3
I do really wish you well it sounds like you've every reason to feel stressed but I do know how horrid it is when the stress takes over completely.
I am on T3 only (20mcg, 20mcg, 10mcg daily). I have noticed that if I get stressed, the adrenaline released makes me 'hyper', more emotional than usual, 'can't cope' feelings and my legs go like jelly. I am very tired afterwards but OK a few hours later once everything settles down (normally takes me out for the rest of the day).
Having said all that, you had one hell of a day to cope with and anyone would be messed up by it and especially emotionally!
I totally understand everything you have written, i also have graves disease and all the uncontrollable tears apparently is to do with that. I am a Health care assistant in my hospital and am going through the same as you, even down to the cravings the crying for hours over seemingly silly things that i would normally deal with. Difference is i have over active thyroids, i am now on 20mg carbimazole, Sertraline 50mg (which has been proven to work for graves disease although takes a month to get into your system) and propranolol 10mg. I also suffer with pains but take nothing for it i just try to move through it. My T3 is 8.5,T4 25.5 and TSH <0.01. I dont know if the sertraline would do you any good, or if your doc would give you it. I still cry but now laugh through it as it is not me and i just say it is part of my illness please ignore me. Hope this helps also there is a grave web site that gives lots of information it is livingwithgravesdisease.com
Sorry to hear how you are feeling. I too am wondering about your adrenals. It might be worth paying for a private 24 hour saliva test, as this should highlight any issues. If your cortisol comes back low, then you could consider adopting the CT3M as you are already taking T3. This involves taking some T3 during the main cortisol production window, which occurs during the last few hours of sleep. Some more info here if you are interested:
Thank you everyone for your extremely helpful information. Your empathy, support, and effort make me realise I am not alone and that there is light at the end of the tunnel. On looking up the adrenal aspects, much seems to fit with my symptoms. There are lots of useful things now for me to consider, research and try that makes me feel calmer and more in control. I am also going to attempt to make some time to be nice to myself. Many thanks. I wish you all good health and happiness. S x
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