I don't know where to begin and this is probably more of a rant than anything but after trying my best to be "right" since the operation I've hit a brick wall that I can't see how I can get over.
Like a lot of people since my total thyroidectomy and bi-lateral neck dissection 2009 I have memory problems along with profuse sweating, lethargy, muscle aches and pains, depression and fatigue.
My employer said they can no longer accept the mistakes I make (it's just an ordinary admin' desk job working mostly with spreadsheets and some that I have done since leaving school). I have been supported by occupational health who informed my employers that I would be likely to lose concentration and make mistakes due to my condition and the amount and the medication I'm on.
Has anyone else been in a similar situation? I'm at the end of my tether, all I get from the hospital is "your bloods are fine/the thyroxine cannot make you feel the way you describe".
I feel like the last 5 years have been a hell of a struggle and now I think it's been a complete waste of effort on my part. Now at 39 years old it seems I'm no longer able to do the type of job I've always done and don't know what I can do employment wise I can't do a physical job due to the operation wrecking nerves (that the hospital wouldn't admit to) in my arm shoulder and neck.
I literally don't know what to do anymore and sorry if this post isn't very coherent.
What help can I get? I need help with money,/benefits and it looks like some kind of retraining to find a job I can do.
Any advice is greatly appreciated.
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vanillabean
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I'm so sorry you've lost your job. Is there a union rep who can advise you as to whether correct procedures have been followed? You need to register with Job Centre Plus straight away to claim benefit while you are seeking work as claims can't be backdated.
Can you get a printout of your recent thyroid results with the lab ref ranges from your GP receptionist or practice manager and post them here. It will help members to advise whether you are optimally medicated.
Unfortunately, despite what the hospital have told you, it is entirely possible that Levothyroxine can make you feel as you do despite bloods being fine. 'Fine' often means within range and isn't the same as optimal. I was also told that Levothyroxine couldn't be responsible for my ills but I improved each time I had to stop taking Levothyroxine for RAI and I didn't recover until I cleared the backup of Levothyroxine and was then able to tolerate Levothyroxine with Liothyronine (T3). Apart from improving my low FT3 the T3 also seems to calm the adverse side effects I experienced on Levothyroxine only.
I'm so sorry you have found yourself in a situation beyond your control. What has probably happened is you've been undertreated or not on the right medication to make you, more or less back to normal. Although I note you have also had bi-lateral neck dissection 2009 which has caused you more complications than others would have.
My personal opinion is that it is a disgrace that they can whip out your thyroid gland without being prepared to prescribe something other than levothyroxine such as adding T3 which may have helped you enormously.
First, get a copy of your latest blood test results. If you've not had a recent one, make an appointment for the earliest time and don't take your levothyroxine before it. Take it afterwards. It's best to have at least a 24 hour gap between levo and the blood test. Ask your GP for Vitamin B12, Vitamin D, iron, ferritin and folate. Ask for a print-out of this a few days later, with the ranges, and post for comments. We are usually deficient in most of these.
Take levothyroxine with 1 glass of water first thing, not eating for around an hour so food doesn't interfere with the uptake. You can also take it at bedtime if you prefer, last having eaten 2 hours before. Vitamin C helps to convert T4 (levothyroxine) into T3 the active hormone we all need in our receptor cells.
I think it is disgusting that when you have a thyroid gland problem that you are pushed off with 'your bloods are normal' when the patient certainly isn't. One of our Admins had a TT and she was prescribed T3 alongside T4 and has done well since. She didn't do well on levothyroxine alone.
We have to read and learn in order to get well. Is there some association that can help re work and money? If you are lucky and get onto the proper medication, you might find that you can cope better. As it is most of your symptoms above would lead me to guess you are undermedicated or need T3 added.
Copy and paste part of your story onto your Profile, so that members in future know your background.
The only way is forward now for you. Forget what's happened which I know is difficult. At least now you have time to get your own health improved.
Definitely find a union rep and contact Citizen's advice - employers must make reasonable adjustments for you or even find alternative work (I think - but I'm no expert).
You cannot be sacked for a disability (disability act) - I hope someone more knowledgeable will chip in.
"bi-lateral neck dissection" sounds horrendous - you need legal help if the op caused complications.
I realise you probably don't feel strong enough to fight your corner so you must find an advocate, someone who will.
Thanks for the replies I'll get a blood test and post the results as soon as I have them.
I honestly feel like I've been taking crazy pills!
I've spent years taking my thyroxine first thing in the morning/last thing at night/before food after food etc etc. Surely if a medicine needs that much attention to when and what you take it with it can't really be that good can it?
I personally think the MDT has been curt with me because I had to use the formal complaints procedure to find info about my nerve damage as they all said there was no nerve damage. Which resulted in me being informed via letter that the surgeon had deliberately dissected nerves to get the cancer out, but failed to mention this to me in my 2 post surgical appointments. They all denied me telling them of the issue. To me they changed their story to fit the facts
I could tell you a complete horror story at the hands of the hospital but that may put people off from seeking treatment.
But suffice to say if I'm unlucky enough to have cancer again I will not be seeking treatment at the NCCC for it.
My ex employer says they have made all reasonable adjustments, they can. I was denied part time work and they said there were no other jobs as they think I would not be able to perform adequately.
Thanks but I really don't see any light at the end of the tunnel and I'm sick of telling my story and people thinking I'm some kind liar, My self esteem has been bad since the op' it's now at an all time low.
So sorry to hear of all the problems you have been experiencing. I really hope things improve for you soon. Have you though of consulting a lawyer who specialises in medical negligence cases? I had a friend who successfully claimed a lot of money. I was with her when she saw the responsible doctor the first time and he invented a fictitious condition she apparently had which meant her problem wasn't his fault. I couldn't believe it and neither did the court. Since she was on benefit she didn't have to pay legal expenses up front - they were met as part of her claim.
I am sorry you have had your self-esteem knocked out of you. At least, even though you have no employment now, take the advice of some of the posts re seeking help via citizens advice, disability etc. Something might come out of being sacked and you now have nothing to lose and can be angry but put it to good use by trying get your health back.
Forget what your employers have said - you can say precisely what you think of them now.
Now you can find time to make the attempt to recover your health with the help of members here.
Many, have had horrendous treatment or undiagnosed for years, or undertreated. So many can sympathise.
The only way is up now. Baby steps first and so on.
There is nothing much worse than being considered a liar when you are genuinely in trouble! I really sympathize, but want to encourage you, too. You've already endured a lot and are still looking for your answers - Your body works together, all of it, trying to get back to health all the time. So when you assist any relevant area, it helps others too.
Have you seen the Thyroid UK doctors listings? Some of these doctors consider more than just the thyroid, which I think you should also do - even allowing for the likelihood that T3 could make a difference. A surgery in 2009 could have set you back just through the stress of the operation (not to mention additional nerve damage which you have followed through investigating - well done!). When we have surgery, or any shock to our system, other malfunctions can follow which set us back. You've had continual stress since then (and before, clearly), so you'd surely benefit from health assistance in any other area that's been weakened.
Check the Thyroid UK website and get their doctor listings. You can consult with one of those doctors to see what else could be addressed. After 2 years of pain and failing health, and found it necessary to go on a diet that solved overgrowth of candida which, together with supplements, has helped immensely. At the same time I've had two surgeries on one hip in the past 4 months, not been allowed to walk on that leg for that entire time, and yet the pain and disability has not set me back to the poor health I was in beforehand. And I am still following the eating plan I was originally given, as I try to be patient in learning how to walk again. Life has immeasurable power if we refuse to give up on it. You are not alone.
I'm so sorry Vanillabean - your story is horrendous and, unfortunately, one of the worst examples of what can happen when treatment goes awry.
Just to add to the very good advice already posted, I found ACAS really helpful with employment issues.
It must have been very difficult coping with full time work since your operation - while things are being sorted, perhaps this time might enable you to rest and do further research - most of us have found it gives us more control over our own health. Shaw has already mentioned getting tested for vitamins B12, D, etc. Sufficient levels are vital to the way in which the thyroid works and I found these to be helpful sites to start - apparently most of us are deficient in vitamin D as suggested by the symptoms you've mentioned.
Richard Shames, MD:
" Thyroid treatment isn't optimal -- and may not work -- if you do not have adequate Vitamin D for the crucial final metabolic step, which takes place at the site where thyroid hormone actually works. This happens inside the nucleus of the cell. Vitamin D needs to be present at sufficient levels in the cell in order for the thyroid hormone to actually affect that cell. That is why vitamin D is so crucial."
If you are counted as having a disability and are sacked because of that disability - that's not legal AFAIK. They don't have to take you back, but you can probably claim unfair dismissal, take them to a tribunal and get some money or an alternative job. Try CAB or that disability and work website.
Get someone to give you Louise Warvills contact info, to refer you to a good doctor. There is so much hope for you to do well, so much you can try, t4/t3 combo, t3 only etc.. You are not properly medicated, i am sure of that.
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