medical assessment, scared as its the 2nd one

I have my medical assessment in Feb & Im freaking out already.I had to appeal the first one & it was such a stressful time. I have a TT 7yrs ago, thyroplasty to repair vocal chords which were damaged during TT. I have depression, nerve pain which Im waiting to get injections for but my calcium & vit d levels are through the floor & they have to be regulated first. I am going to counselling cant remember how many times it is now. I suffer from the usual tiredness & brain fog. Anything i do exhausts me if i go to the shops with my husband i either sleep on the way home or end up in bed when we get home. My husband will be going with me I just need some advice to answer the questions as i get so anxious & cant get my point over, can my husband answer them too?

thanks Sarah x

14 Replies

  • Hi Mrs Bargirl,

    I am sorry you have had such terrible problems and that you are so unwell.

    What dose of (I assume levothyroxine) thyroid meds are you taking. Do you have a print-out of your most recent blood tests, with the ranges?

  • no print outs, last blood was fine, thyroxine 75mcg

  • Mrs Bargirl,

    Always ask for a print-out from the surgery (we are entitled) for your own records and the doctor saying your bloods were 'fine' is not a confirmation that you are 'fine. Many doctors believe that if our TSH falls anywhere within the 'normal' range that we are on an optimum of medication but that's not the case. The purpose of taking thyroid hormones is to be well and if we aren't we may need more or different ones.

    The fact that your have had a TT 7 years ago and are still unwell with clinical symptoms, would lead me to believe you are not on an optimum of medication. It's bad enough being on T4 only when we just have a failing thyroid but to have your whole thyroid gland removed and not provide, at least some T3, if not T3 only I think you deserve to at least have a trial. Your dose of 75mcg may be too low for your individual needs.

    Psychiatrists use T3 for depression. Depression is also a clinical symptom of hypothyroidism. I think you are remaining unwell because you aren't on an optimum of medication.

    If you haven't had a blood test for a while, ask your GP to do a new one, to include TSH, T4, T3, Free T4 and Free T3, vitamin B12, Vit D, iron, ferritin and folate. He may refuse but say you feel entitled to a full thyroid test as you should be feeling much better and at present you are in 'limbo'.

    Make the earliest possible appointment, not taking any levo until afterwards.

    Get a print-out of your blood tests.

  • ive never been on t3, i dont even know what it is/does.............why hasnt no one even noticed in the 7 years?

    i know my calcium & vit d is low, i think you may have answered a previous question about it x

  • The guidelines tell the GPs/Endocrinologists to only prescribe levothyroxine, but many people do not get well on it for one reason or another. I think some are very ignorant.

    A short synopsis:

    The primary function of your thyroid gland is to secrete thyroid hormones, which are responsible for controlling your body’s metabolism. The 2 main thyroid hormones are T3 (triiodothyronine) and T4 (thyroxine). The amount of thyroid hormones secreted is controlled by another hormone, called thyroid stimulating hormone (TSH), which is released from the pituitary gland in your head.

    The thyroid hormones are involved in regulating many of your bodily functions, such as your heart rate, how quickly you burn calories, and digestion. Babies and children need adequate amounts of thyroid hormones for brain development and growth.

    You are like thousands of people, myself included, who took the doctors' words and diagnosis for granted. In most times it was right but with the thyroid gland they have extremely little knowledge unfortunately for us who are left to suffer. The thyroid gland also produces calcitonin which is beneficial for our bones.

    Levothyroxine is synthetic and many do well, but many do not and I think most are on this site. Levothyroxine (T4) means thyroxine which our bodies produce to convert to sufficient T3. T3 is also called liothyronine also known as triiodothyronine which is the active hormone we cannot live without. If we have too little we suffer. T4 (levo) we can live without. I myself take T3 alone now as levo made me feel much worse.

    Before the blood tests and levo people were given NDT from 1892, natural dessicated thyroid hormones made from animal glands that contained all of the hormones that humans had . Due to pharmaceutical companies paying big bucks to doctors and endocrinologists in the USA when levo and the blood tests came in, levo became the only hormone to be given to us. This gave the pharmas billions of dollars.

    T3 has to enter our Receptor Cells and we have billions, from head to toe and the brain contains the most. After that the T3 continues to work for between 1 and 3 days.

    Doctors believe T3 is dangerous, but that is due to their ignorance. T3 is extremely safe whereas T4 has been recalled so many times for inconsistencies.

    We have to read and learn, unfortunately, and medical students used to be trained in the detection of hypothyroidism/hyperthyroicism by clinical symptoms alone and then gave us NDT until we were well. Nowadays, they are told the computer can 'tell' them we are 'fine' etc. etc. When the patient keeps complaining the are given other medications for the symptoms instead of a decent thyroid hormone.

  • thanks, its pretty sad that Drs dont know as much & the patients suffer. Do you have any tips on the assessment?

  • I didn't say that many people feel a benefit with T3 added to the T4.

  • I haven't been to an assessment. But I would just tell them that you are still unwell and you have just learned that the addition of T3 may be able to help you feel better and give you some life back instead of being continually unwell. You want to pursue this with your doctor.

    It's not your fault that your thyroid gland was removed and are therefore not getting any natural thyroid hormones from your gland.

    This is an excerpt from an article. I think more studies have been done but cannot find them at present.

    The method of choice for hormone replacement in postoperative hypothyroidism is to give L-thyroxine in a dosage adjusted for the patient’s body weight. Evidence from controlled trials does not support the routine use of combination therapy with both L-thyroxine and liothyronine (T3), although this may be useful in individual cases.

    So the addition of T3 could be helpful in your case.

  • They try and catch you out in that the medical evidence is ignored completely, the final assessment is done by a non - medical person. If you are asked if you can go to the nearest shop if you have nothing to eat, say that you have Social Services on speed dial on your home phone. I feel for you, I have my 2nd assessment on Monday, they refused to do my first one as I wouldn't sign a form they offered me, ( I couldn't read it and refused to sign something I couldn't see!!) I explained that the DWP website expressly explains that you are working age until you are 61 1/2 and I am 62 in less than a week now but they are determined to take what little I have to live on away to justify their targets.

  • Having also been at the mercy of this system myself I will try and help.

    It's great that your husband is taking you, you will need to exagerate your condition unfortunately or they will find you fit for work. I know people who have wheelchairs specifically for going to these assessments, I don't agree with that myself but that seems to be what's required if you want to be put in the support group.

    I recommend benefits and work website, I paid to join, I think it cost £20 for a year's membership?

    The site is run by an ex lawyer I believe and the advice is brilliant with a forum for asking questions.

    They provide step by step guidance for completing benefit forms and for attending 'medical' assessments.

    Remember the person who will assess you is probably a nurse with limited knowledge of health conditions and she will be folllowing a computer script that the DWP provide with questions designed to catch you out.

    If you can let your husband do all the talking and answer the questions that's better than you speaking. I failed my first assesment as I had a mobile phone, the nurse also lied and twisted a lot of my answers.

    I now work part time as I couldn't stand the stress of the benefits system.

    Good luck, hope it goes well.

  • Thankfully, you now have some good responses from members who have been in the same situation as yourself. Don't let them bully you as I realise you are already very nervous. Maybe let your husband do the talking as he is the one who really knows you and how you and he have to cope with undermedication. Potnoodle's advice re the lawyer's site will probably give you more helpful advice.

    It's bad enough being hypothyroid without added stress.

    Best wishes

  • Thanks everyone. The first one I had she kept going on about my blonde hair now I know why! Why cant they just believe you and medical people seem to know very little about thyroid conditions. X

  • Mrs Bargirl, I just had my third assessment on Monday for DLA, which I had an indefinite award for, now PIP. I had a registered nurse come to my house. I was surprised at how nice she was. I think you're at a disadvantage having to go somewhere to be assessed. I was able to put all my aids, drugs, show what I'm paying for out on my dining table. I was able to show the disabled toilets we've had installed at our own cost, all the taps have been changed to lever taps, plus I now have two bidets which I use for pain relief etc etc. I also have an incurable bladder disease and arthritis.

    How I approach the application, is I write to my GP explain each condition and how it affects me with daily tasks because my experience is they are clueless. I always get the form filled in for me at the CAB, because a lot of it is technique. I had to do exercises to do with my arthritis, and genuinely couldn't do any of them well. Do I feel confident? The person who completed my form with me was a retiired decision maker for the DWP, and she said I should get the full PIP, but who knows.

    Remember they are not interested in what illnesses you have, it's how they affect you.

    I was terrified before the appointment, but I have to say the nurse who came out was really jolly. It really helped in my case to have a woman assess me. You are within your rights to ask for the gender of your choice.

    The assessment was nearly 3 hours, the nurse asked me direct questions and typed the responses on her lap top. There wasn't anything that was difficult to answer, I didn't have any feeling she was trying to catch me out. At the end because I knew she had to write a report, I gave her the copy of the letter I wrote my GP.

    I really hope it goes well for you. X

  • Hi,

    There's website called 'Benefits and work' which I believe is very helpful with matters like the one you're facing but CAB also have welfare benefits advisers, is it worth contacting them for more advice & information before your medical ?

    Hope it all goes well for you x

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