Seven months and one day ago I was a vibrant, happy, wife and mother. My days were filled with going to the gym, running around town with my kids, creating beautiful cards, keeping my home beautifully organised and being involved with and totally supporting my family in everything they did. Seven months ago, on my sons 17 th birthday, ihad a strange dizzy feeling in my head. I thought I was just a bit off or maybe it was from some eye drops I commenced a few days earlier. I managed to go to dinner that night to celebrate, but by the next day just felt worse. My husband had to leave for work in Bangkok and as the next week rolled on I became iller each day- cold, upset stomach, no appetite, chest pain, palpitations, felt like I could hardly stand up, terrible pain in my thyroid. Eventually a friend took me to the ER a week later, but was sent home with them having no clue what was going on.
The suffering continued so I got to my Gp who was sure it was thyroid related. Labs came back normal!!!! Tsh was lower than usual at .5 though. Had scans and biopsy done. Biopsy showed an abnormal result in one of my 12 nodules so it was off to the surgeon next.
The surgeon was great and took one look at all the tests and simply said I had a toxic multi modular goitre and it must come out!! So 5 days before Christmas I had surgery and expected i would go home on meds and start feeling better fairly quickly!! I could not have been more wrong!! After being on 100 mcg thyroxine for 2 weeks I got very severe hyper symptoms so had to reduce dose to 50 for a couple of weeks with the endo saying it wouldn't do me any harm. Well by the end of 2 weeks I was ice cold and knew hypo was setting in. So up went the dose to 75 and sat on that for six weeks with no improvement and tsh 18.
Knowing I was sensitive to dose increases we cautiously took the dose to 82 which landed me in the ER with sweats and racing heart. That settled and so over the next 2 months we slowly increased the dose every couple of weeks and finally got to 100 mcg in mid May. The TSH was now 2.1 which was a great effort but I still had no relief from symptoms such as dizziness,fatigue, coldness, pins and needles, sore muscles, shortness of breath, pale hands and feet, dry skin, etc, etc! My lovely endo said 2.1 was good and sit on that for 3 months!!
I told my lovely endo that I had started 110mcg and she said she was happy if I did that for now. So with my crippling symptoms I hope that will be enough to knock a bit more off the tsh so I can start to feel well again.
Like so many others, my life has been turned upside down with this terrible disease and I just can't see an end in sight. I thought with my tsh back in range I would start to feel better!
My family is absolutely wonderful and don't think I would have got this far without them.at the moment I struggle to get through everyday and have times each day where I don't think I can go on and wish I could just fall into an endless sleep. Somehow I do get through the day though and catch a few hours sleep each night and get to do it all again the next day!
I look forward to the time when I feel we'll again, but I do know a lot of my thoughts are negative at the moment as my symptoms are so severe and relief has not come my way yet.
I will continue the fight down here in the land of Oz and look forward to the continued support of my wonderful new UK buddies xxx
Written by
Xenelk
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Somebody might be able to help here, how about posting blood test results with ranges?
Also if you have not already joined some thyroid organisation perhaps this link might help you understand more, you will find that levothyroxine is not the only treatment available if things do not work out.
Thankyou so much. Put some labs up last night and general response was that tsh 2.1 is still too high to feel good so hopefully an increase will help me out. It is the first time in 5 months that tsh has actually been in range so I know I need to give things more time. Thanks for link also xxx
It helps greatly to have support. Like Ldepluzer's friend I too am on combined T4/T3 treatment (synthetic, not NDT) and feel good, but before Dr Toft advised endo I needed this combined treatment I had difficulties like yours.
Didn't see your lab results, sorry for asking for them, but with a TSH of 2.1 I am sure I would be a stretcher case.
Yeah I am sure 2.1 will be too high for me too!!! Hoping my modest increase of 10 mcg will help a bit. I am pretty much a stretcher case at the moment and its no fun. My t4 is up there t 18 and t3 4.4. I must be getting closer!!
Poor you !! I was diagnosed 10 months ago and like you a busy mum and outgoing person , I was a nightmare and thought there was not light at the end of the tunnel . I took Levo for 6 months plus all the normal supplements , I couldn't even get out of bed and my tsh was 1.00 ! And then !!!!!!! My doctor told me Levo is not good for everyone and can cause muscle pain so I started wil armour !!! Yeah I feel great !!! It might not be the answer for you but with the rights meds you can be well . I also have a friend who is very well on t4 t3 combination . This site was my godsend it keeps me sane . Lots of positive thoughts coming your way :))))
So glad you are well now. Am considering armour if I can't get well once I give the thyroxine a good chance and get my tsh to around 1. Have just found this site too and love it. So good to hear about other people's struggles and triumphs with dreaded thyroid problems. Thanks so much for taking time to help me with some advice and positive thoughts xxx
You'll get there in the end, yes its a struggle and there will be up's and down's but you have a good medical team behind you (which is a HUGE plus) and seem a very determined lady.
The more your knowledge of this awful illness grows the more you will be able to control your symptoms by adjusting meds yourself and this awful see saw you are on will begin to slow.
Wouldn't it be great if you could then take all of your new found knowledge and start an Australian version of thyroiduk (thyroidoz) as there must be many in Oz that are feeling as lost and venerable as you are right now.
Thanks Moggie. Yes, have great plans to start a good Aussie support site once I am a little better. Glad you mentioned adjusting meds myself too as my hubby and I have talked about that and realise already that is what will have to be done sometimes. Hard part now is giving my modest 10mcg increase another couple of weeks at least before testing and deciding what to do next. Will be up for more advice then so stay tuned!!
My endo did give me a good bit of advice regarding medication increases/decreases, in actual fact he told me off (Oooops) as I was suffering from heart palps. He told me that I was not giving my body, especially my heart, enough time to adjust to a new dosage before changing it again and that was why my heart was jumping all over the place. He said every increase/decrease should be given at least six, preferable eight, weeks for the body to adjust and recalibrate itself before trying a different dose.
Just a bit of info for you to file away for future ref.
I am on block and replace for Graves Disease and have now become under-active but after a month on my first round of thyroxine the pounding heart came back and I went to my doctor thinking I was over medicated and had gone hyper again. Then someone on here said it sounded like I was actually under medicated and sure enough when I spoke to my lovely endo ( first guy I saw and who prescribed my first thyroxine to go with the Carbimazole I had been taking was her sidekick and was just 'the endo' ) anyway thanks to that when she said I was actually still a bit under-active and she was going to raise my thyroxine I wasnt surprised. I have booked myself in for another blood test on Monday because I think I am hypo again and need more thyroxine, I'm only on 75 mcg at the moment and I am seriously cold, constipated and moulting plus for the past few days I have been sneaking back to bed for an afternoon snooze to get me through the day and the pounding heart feeling is back lurking away in the background.
So what I am trying to say is that you have my total sympathy, being hypo really sucks! Funny, but as I typed that I found myself thinking - I just want to be normal.
Oh Liz, it is horrible isn't it! Such a waiting game and I know what you mean about feeling normal again. I guess it is possible for us. Take care and I hope today is as good as it can be for you xxx
Hi to you in Oz, this thyroid lark isn't funny, is it. So many weird symptoms and I thought I was going off my head. Lol when I spoke to people on levo, they were ok, so until I found this site I thought its just me.
I stopped saying anything to Dr in case they thought I was a hyperchondriac, but on here people really understand and support each other.
I look forward each day to my email, and feel they are my extended friends. Thanks admins and everyone.
Clarebear warns against TSH used to judge progress and says what should be used - so right - being on T3/T4 I have had to twice fight off GPs who go only by the TSH (so wrong) and, mine being suppressed, they imagine I am hyperthyroid and want to reduce medication, without even taking my FT3 level into consideration. One GP even referred to my "very strange" treatment of T3/T4 in a recent letter to me. But we cannot expect GPs to be experts in everything so we all need to learn about our condition for our own safety.
Hi - your symptoms sound very similar to mine when I was first diagnosed - dizziness/vertigo, tingling hands and feet, feeling faint/strange sight problems, anxiety, foggy thinking, difficutly holding my head up as it felt too heavy etc etc. I also became a bit agrophobic, having always been very outgoing and fun-loving.
I had a read on the internet and thought I probably had MS or a brain tumour, but was relieved when my doctor tested my thyroid and told me it was probably my thyroid causing the symptoms. My TSH was 18.0 but fT3 and fT4 were just in the bottom of the ranges. I was sent to an endo who told me it wasn't my thyroid, just anxiety. I couldn't believe it, because by then I had found this site and was sure it was my thyroid.
Anyway to cut a long story short, I started on 50mcg of thyroxine and felt even worse with really severe anxiety and headaches. It gradually settled back down, but I still felt awful. Increasing to 75mcg didn't help.
Eventually I managed to persuade my endo into a trial of Armour. That was 18 months ago, and although initially I felt even worse, I am now on 2.75 grains and feeling pretty well most of the time I still have a few days where I don't feel so great, but on the whole I am pretty much back to normal. My TSH is suppressed at <0.02, fT4 is just above mid-range and fT3 is near the top of the range.
Have you checked your iron/ferritin and cortisol, as these can make a real difference to whether you can process the thyroxine, and if low can cause hyper-like feelings. I have had to get my ferritin from below range to over 90, and I think this really helps.
I really hope that you get sorted soon, as the symptoms are soooo horrible and unrelenting. Personally I think dosing by TSH is useless, you need to be going by symptoms and fT3 and fT4. Do you have any thyroid blood tests from before you had your thyroidectomy? If so these might be helpful in determining where your fT3 and fT4 should be
Hi Clare, thanks for sharing your story.my serum ferritin is 51(15-165) so maybe I need to get that up a bit. More prunes I guess!! When I was well my tsh was 1 or below. When I became Ill the t3 was 5.5 and tsh .51(.5-4.5). Did you take supplements to get iron level up??
Your fT3 looks a bit low to me. You may be able to get it higher by increasing T4, but I suspect that you may need the addition of some T3 like me (mine is in the Armour). In order for me to get my fT3 high enough on T4 only, my fT4 went out of range and I felt awful, hence a T3/T4 combo seems to suit me better - I can have the higher fT3 without having out of range fT4. However, high fT4 does suit some people xx
I am so sorry you have had such a bad time. My TSH level is 0.6 at the moment and if I am not under 0.5, I have symptoms. My GP has now increased my levo dose and I am on 125mcgs daily instead of 100/125 alternate days as I have hypo symptoms so she is finally listening to my symptoms and not my TSH level!
I hope, very much, you eventually start to feel better and that your GP listens to you so that you get your medication working for you.
i know you are in Oz so there is more likely an abundance of sunshine.....however, if the parathyroids have been disturbed/taken with the thyroid surgery this will affect calcium and may cause a crash in Vitamin D.....To make sure all the bases are covered I would insist on a Vitamin D test and yes I would suggest increasing your ferritin
I don't know very much but when speaking with my Breast Cancer surgeon (who also does endocrine surgery) he suggested that in our area they now put the thyroidectomy patients on T3 initially and then move them across to T4, as they have found this to be more effective.......I'm sorry I don't know any more than this, as it came out in a conversation about the cut back in lab work in our area, they will now only test TSH!!!!!!!!!
Are you able to go back to your medical team sooner rather than later? I think this may be best for you.....my gut feeling is that you may need some T3 in the mix either with Natural Dessicated or synthetic T3.
Thanks so much for your advice Sue. I do take vit D and calcium as have had problems with the levels at time. Oddly enough lots of Aussies do have low vit D as we cover up a lot and use heaps of sunscreen. Lots of skin cancer over here has changed our days of lazing endlessly in the sun!
I guess I need to give things a little more time now that I have just got levels in range and see how I end up in a couple of months.
T3 has crossed my mind as have noticed it hasn't budged much yet.
The journey will be continuing for awhile yet I can see so will try stay positive and keep learning and look to all my new friends here for advice and support xxx
There is a lot of lifestyle advice on drmyhill.co.uk There is also a lot of info relating to 'optimum' levels of Vit D and other things.......it is a huge resource of wonderful information. It may be that calcium and vit D need to be monitored more frequently, so that yo can get them back in range sooner.
Have a good sleep as it is bed time soon for you !!!!
Umm sounds like your cortisol is out of sync......hopefully it will all come back into balance once you are optimal with your Thyroid medication......Yes the sun is actually shining here today xxx
Have researched that Muffy and visited a doc who prescribes natural thyroid. Have some on the shelf even!! Just wanting to give thyroxine a fair chance now that I have only just come into range after 5 + months of struggling. Hard to know what to do isn't it!!
Thankyou happy. I can see the journey for me still has a way to go. None of this"have your thyroid removed, start meds and you will soon feel better" for many of us.just getting through each day is still terrifying at the moment so I really hope that starts to improve soon. So glad you took the time to write to me.
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Newly diagnosed people - take heart! Levothyroxine CAN work, and often does! My story...
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