Post TT 18/06/2013,with Graves Disease and very severe TED, still extremely ill

I am very unwell after my TT, my Dr refuses to read literature I have printed from very trust sites, he will only treat me with Levothyoxine, he says my level are fine, only test TSH, T4 and TPO, although he says my anti bodies are far too high and that's why I'm still very ill and just to give it time!!!!! My husband is so fed up off my moods he is leaving me!!!!! And I am glad to see the back of him as he's a useless carer, and doesn't fight my corner at all. My B12 is 375 my dr says this is fine, but I have read it should be top the the range 900 when one has had a TT and graves, my eyes have worsened considerably, I have had to order new glasses, my double vision is horrendous, I'm not allowed to drive, and I have to wear very dark glasses outside, and I now carry a white stick. I am at the end of my tether, I wish I was dead, but no that's to easy. I have to suffer, I have been ill for many years, had ovaries removed because of massive cysts in 2008 , had GORD for many years, high blood pressure, now I have gallstones and my surgeon has booked me in for a removal op, but won't operate until my thyroid levels are normal, so without the correct thyroid blood tests and meds , how will I know if my thyroid is at optimum level, my dr might say its ok but is it, I am putting myself at risk????

7 Replies

  • Ow dear, you really sound fed up and I am not surprised, your antibodies will make you ill. You are correct in saying tsh and t4 will not give a clearer picture, you need ft3 ft4 and sometimes people have r t 3. Autoimmune d( graves) has not been considered, your blood test will be normal however your tpo is saying there is a autoimmune attack still present and the tpo antibodies are making you sick. You doctor is saying your thyroid levels are normal, when in fact the other numbers could be out and what about your antibodies, surely they are educated enough to realise antibodies are making you ill. I feel for you but you seem strong and determined. Could you ask your gp to test t3 ? Also it may be well worth googling tpo antibodies. Hope this helps, sorry to hear about your husband. Xx

  • My Dr has now referred me back to the horrible Endo that advised me to have my thyroid removed , during the 18 mths I wins supposed to be seeing him I meet him only once, I was fobbed off with his specialist nurse who hadn't a clue about Graves' disease,...they only tested my t3 twice, and only for antibodies once, the rest of the time is was TSH And T4, very neglectful I'd say..... He was only interested in ripping my thyroid out..... My eyes are shocking the antibodies are so active my specialist can't operate on them until they settle down, they have been terrible for over 2 years now!!! How will they ever settle down without the correct meds!!!!!! Also how will I ever get my gallstones removed, if not on correct meds!!!!!

  • You can see whichever Endocrinologist you want and if you email for a list of NHS Endos, there may be one near you. Hopefully.

  • My husband has just got home from work, I am in bed, he has not checked in on me and has gone to bed in the spare room , and I am extremely ill and totally alone.... I wish I could die.... My dr is treating me appalling and my hubby just stood there and ley him, after that we had a massive row and he says HE has had enough, !!!!!!!!!

  • My Dear Girl,

    Your story is so, so sad and I am extremely sorry your husband is not supportive Some people are afraid of illness and feel out of their depths when their other half is still complaining of being unwell especially when doctors say there is no reason for you to still be feeling so ill.. They are apt to listen to the doctors - whose decisions ruin - sometimes your health and also your wellbeing. Also our personalities can change and we have no control over it until we are on optimum medication.

    I have replied on another post to you and I have copied and pasted below:-

    Hi Tish, I am sorry your GP is not co-operative regarding your thyroid gland medication.

    Have you had a recent blood test? If so, get a print-out from the surgery complete with the ranges and post on a new question.

    You may be undermedicated especially as the surgeon says your medication is not optimal and I agree that some T3 should be added. Can you change your GP - it may be more beneficial for you.

    This is a link:

    Excerpt from Dr Toft - ex President on the British Thyroid Association.

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.


    The surgery cannot REFUSE to give you a print-out. Phone the surgery speak to the Receptionst and see if she will give them over the phone with the ranges. It is better to get a copy for your own records. Maybe your husband will get it for you or do you have a friend. Your husband feels out of his depth at present and some people cannot cope with ill-health, especially as it has been going on a long time. Surgeons are fine at whipping out the thyroid gland but DO NOT explain the consequences if you aren't on enough or suitable meds. Once their job is done your GP takes over and most don't know the most basic to get you well.

    Find some strength from somewhere as it is the only way to try to get better - although I know it is difficult. Most of us have been in similar circumstances.

    Once you post your blood test results members will comment.

    Best wishes

  • I am leaving my husband today, and going to live in Darlington near my son, I will be much happier there, I have been threatening I'd do this for 2 years, now the time has come, I'm hoping for better support and maybe better doctors. Thankyou for taking your time to reply x

  • My blood test results

    Serum vit B12 level (XE2pf 373ng/L (110.0-914.0). 05/07/13

    Collected 09/08/13

    Thyroid function test (X77Wg)

    Serum TSH level (XaELV). 1.01 miu/L (0.34-5.6


    146 iu/ml 0.0-10.0- above high reference limit

    Liver bone profile

    Serum calcium level. 2.33 mmol/L 2.14-2.62)

    Serum total protein level. 70 g/L (57.0-77.0)

    Serum albumin level. 45 g/L (35.0-50.0)

    Corrected serum calcium level 2.23 mmol/L (2.14-2.62)

    Serum globulin level. 25 g/L (23.0-41.0)

    Serum alanine Aminotransferase level 14 iu/L (5.0-45.0)

    Serum total bilirubin level. 11 umol/L (4.0-20.0)

    Serum alkaline phosphatase level. 128 iu/L (30.0-130.0)

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