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What to do????

Discussion in 'Personal' started by caress, Dec 2, 2019 at 2:54 PM.

  1. caress

    caress New commenter

    Some of you may remember me from before, I was diagnosed with thyroid cancer last November and underwent two semi-thyroidectomies. Basically they took half out to check it as the biopsy wouldn't work, found out it was cancer and whipped the other half out. I was put on liothyronine in case I needed radioactive iodine and when I didn't, was put onto levothyroxine. That was a disaster, I went severely hypothyroidal and was confined to my bed for weeks with not even the energy to shower at times (I did, but had to flow straight down afterwards) Demanded to go back on liothyronine and at first all was well. Then I started getting symptoms, shortness of breath which is debilitating, depression, anxiety, forgetfulness, vision problems, agonising joint pain so I'm on super-strength painkillers and walk with a stick, faecal impaction leading to rectal prolapse (sorry guys, TMI I know...) and utter exhaustion. I can manage to do my job (my timetable is very light) but I'm a limp rag when I get home and am never up past 9pm. Quality of life is almost nil, due to all the symptoms. I've spent the day at the Rapid Assessment Unit where they diagnosed severe & critical hypothyroidism & tried to get an endocrinologist to see me, my ENT consultant apparently contacted him in August to schedule an appointment which never happened and I've seen my ENT consultant just two weeks ago and explained the issues and he said he'd "prod the guy" but still I've heard nothing. Well done if you've read this far but what can I do? Who can I badger to get to see this endocrinologist? I don't know how much longer I can hold it all together! :(
     
  2. Marshall

    Marshall Star commenter

    OMG - what a nightmare!

    1. Hope you are signed off sick? If not then do it.
    2. Speak to anyone you can - GP, etc. Ask the GP to speak to the specialist's secretary to arrange an urgent appointment. I find it helps if you bullet point it and conclude it with what you need/want (recent experience - GP told me he wished all patients were as concise!)
    3. Cry, and cry - lots of snot helps!! (sorry - not trying to be cheerful).
    4. Threaten to make a complaint and if nothing works, then do it.
    5. You need to fight, it's really hard but no-one will do it for you (unless you have someone close and strong who can and will)

    Please let us know and best wishes xx
     
    jellycowfish, Lara mfl 05 and caress like this.
  3. chelsea2

    chelsea2 Star commenter

    If you can stand it, contacting newspapers might lead to a swift appointment. Or, perhaps less in the public eye, a TV or radio programme such as Dispatches or You and Yours. Maybe even your local parliamentary candidates, though I suspect they have other things on their mind.

    Of course, because of the forthcoming election, you may end up as a political football - or mascot. But it may help your case ultimately,

    I am so sorry to hear what's happening to you - it sounds dreadful.
     
    Lara mfl 05 and caress like this.
  4. HelenREMfan

    HelenREMfan Star commenter

    I was diagnosed with an underachieve thyroid at 31 after my 2nd child was born. It solved for them the reason why I had been so low in iron etc during the pregnancy.
    After that ... no one in the medical profession has been the slightest bit interested! I was seen, very briefly, by some dr at the hospital who hardly glanced up from what he was doing. The only thing I remember him saying really was that I wold be on medication for life and that was it ! 6 monthly blood test to check my levels and meds upped (most usually) or downed depending on that.
    I am doing a medical study for a clinical trial company where I get all sorts of stats taken regularly and the nurse there commented on my thyroid condition. I was then given more info than I had ever had in 30 years ! According to her drs in this country and just "not interested' in it as it affects almost totally females (mostly middle-aged women) She told me about "T3 and T4' and that the tests done here do not identify which the patient might be deficient in and if it is (I forget) one rather than the other then levothyroxine/whatever does NO good at all. She gets her supplies whoever she goes on holiday to Turkey (or when any friends go) where apparently you can get meds over the counter.
    Anyway...it is the Americans who are far more clued up on Hypothyroidism etc and if you go onto the Net you will find all sorts of discussion groups. I admit I haven't been as proactive as I might. I did ask had I ever been or did I need to be tested for Hirohito's disease but met with disinterest... try this link for info
    https://patient.info/doctor/hashimotos-thyroiditis

    @grumpydogwoman's wife seems to be a total expert on this subject and if possible she might be able to steer you towards useful help (and less of the vagueness I am offering)
    What I would recommend is that you start shouting about this...or get a 'patient advocate' if you feel unable to make the medical profession get on and do their job re this. I wish I had been more proactive in the past.... the weight issues might have been easier. I admit to being rather negligent through ignorance around the issue but it is and can be serious so you need to get good and expert treatment. I would advise you to be well clued up before you get any consultant involvement.
    Wish you luck and a better recovery from all this.
     
  5. frangipani123

    frangipani123 Lead commenter

    So sorry to read this, what an utter nightmare. I don't know how you are managing to go in to work and agree you should be signed off. You can self-certify for the first week.

    Regarding the endocrinologist, you can contact the PALS team at your hospital - Patient Advice and Liaison Service and explain to them your terrible experience and that you want to see her/him urgently. This service is for this type of situation and isn't a formal complaint as such, but I have known people to get things moving. You can do this by telephone or usually online on the hospital website. You are extremely unwell and don't want to suffer like this or for your condition to worsen. Good luck.
     
  6. Aquamarina1234

    Aquamarina1234 Star commenter

    I can't complain about the treatment I've received regarding my thyroid but I know it's very much hit and miss, especially in the absence of a definitive diagnosis. Once your thyroid's gone (mine was eaten away by my very own immune system), it impacts on your adrenal and pituitary output too. It needs the attention of a consultant endocrinologist and the way you've been overlooked here is shocking. As a first-off, I'd be copy and pasting that OP and sending it to PALS, the Trust and the GP naughty step (can't remember what it's called). They've had their chance. When I was messed around after a cancer (false) diagnosis, things didn't half speed up after I sent a formal complaint.

    Get yourself signed off if you're not already. Wearing yourself into the ground when you are by definition unwell won't help anything. It'll up your cortisol levels for a start and that has a knock-on effect on your thyroxine levels. Why did they take you off lyothyronine? You need both. Levothyroxine is only T4. Can you travel? If your ENT specialist has already jiggered off for a ski-ing holiday, could you go outside the Trust? i've had ops in the past in Harrogate and Bradford because Leeds was full but it is a pain having to travel to all the follow-ups too.

    Hope this gets sorted quickly.

    P.S. The reason endocrinologists are never available is down to the diabetes epidemic.
     
    Duke of York, caress, Alice K and 4 others like this.
  7. grumpydogwoman

    grumpydogwoman Star commenter

    HM had to go private.

    Dr Shirine Boardman.

    You need T3 and T4. HM is also on the thyroid forum on Health Unlocked and attends local support-group meetings.

    HM now doses herself. She pays for private blood tests. Thriva is an example of one of the companies who do this. There are many. She doesn't take levo.

    She responds only to natural desiccated thyroid which is extracted from pigs. The popular brands used to be Armour and Erfa but they are currently hard to obtain. She now imports hers from Thailand. Levo is synthetic and there's a lot of controversy in the community about the efficacy of levo v NDT and the profits enjoyed by big pharma.

    All I know is that HM has to work hard to stay healthy. At first she had several months off work but she copes these days after a lot of research and effort. And expenditure. Her GP is useless. The NHS endos were useless. They generally are much more knowledgable about diabetes and thyroid conditions are less well-understood.

    You will be affected by your diet, by the amount of time you spend outside, by stress. You are, in short, rendered very sensitive. Maybe she's unusual. But HM does struggle. She is also managing. I'd like to hope you simply happen upon a regime that suits you but I'm going to advise you to be your own best advocate. So. Online communities. A good private endo (if you possibly can). Delve into your bloods. Don't put your faith in the GP. Not their fault they won't know much. They simply can't.

    Blood chemistry is one of the toughest things. A broken leg can be imaged. Blood chemistry is ever-changing. I'm pretty sure my ovarian cancer is a lot easier to deal with in some ways. A scan and a set of blood tests. It doesn't vary much from day to day. You can explain it and you've a fairly good idea why you might feel terrible. Whereas the thyroid affects your whole system.
     
  8. Mathsteach2

    Mathsteach2 Established commenter

    No problem, you must already have unbelievable strength. I am searching for the strength you have, and posting my ailments here has helped me tremendously, I am told it is talk therapy for me. I have my wife and I believe I have God, but putting pressure on this world is something each of us must also try to do. God bless you and I wish you continued strength in your life. You will hold it all together.
     
    caress likes this.
  9. Corvuscorax

    Corvuscorax Star commenter

    nothing useful to suggest but just sending you love and best wishes
     
    caress likes this.
  10. Dunteachin

    Dunteachin Star commenter

    So sorry that you're feeling like this, Caress! Xx
     
    caress likes this.

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