Antibodies, Graves, feeling terrible and abandoned

Hello, I am new to the website. I am so upset that this may be completely incoherent and make no sense.

I am hoping for some advise or just understanding. I had my first very bad spell of Hyperthyroidism 15 years ago. I was told then that it was autoimmune because I had Graves Antibodies. It took approx 3 years to get my TSH to be even detectable despite increasing doses of Carbimazole. That time my symptoms were textbook hyper and terrible. I never had any pain or discomfort or apparent swelling in my neck. I also worked full time with 3 young children and took no time off. I saw the Endo man approx twice. I had blood tests at GP and Endo man would leave me voicemails to say take more Carbimazole.

Then 7 years ago it returned, Similar management just take ever increasing Carbimazole as advised by Endo. ( Just as an aside, nobody asked how I felt and apart from 1st visit to Endo 15 years ago nobody examined my thyroid.) So again it proved very resistant to the meds and in my opinion did what it was going to do regardless. which was that it gradually crept to an acceptable TSH, therfore discharged from Endo 6 years ago. At my last visit to Endo I tried to describe a tpain that I was getting that felt as if it was my thyroid. It happened then only when i used my arms in a particular way, eg mopping or hoovering any pushing activity made my throat hurt. That was dismissed. My Gp was to monitor things. As far as I know they only cared about my TSH ad the last test about 2 years ago said subclinical hypo. This baffled me because I was experience hyper symptoms in particular rapid heart/palpitations and feeling that my heart was missing. I was found to have an aortic valve leak. At the cardiologist when they did the ultrasound of my aorta it was uncomfortable, the throat pain was gradually worsening . I started to have very frightening symptoms, choking and outrageous coughing fits, hoarse voice dizzy ear pain and tinnitus and palpitaions. My GP was now exasperated and said they,d do an ENT referral. That led to a brain scan and Cerebellar Ectopia was found. That led to a neuro and neurosurgical referral. Because when I coughed my head felt ready to pop and i had horrible pressure in my throat/chest they did a csf flow study. The outcome of all of that was it wasnt a Chiari Malformation, so advised go back to ENT. I was frustrated because for the first time in my life I had gone off sick, My shoulders became really painful and doing anything with my arms up or in front of me hurt. had been off 4 months, felt worse and knew nothing. I visited my GP in August 15 the same day the Neurosurgical person discharged me, because I needed to get a "fit note" . I was so confused and hating myself, I felt like a complete waste of time and money. The person I saw was rude and so passive aggressive. I wont go into detail about the conversation but I left in tears. I booked to see my usual dr. I told him that I felt I was being put in the somatic symptom disorder bucket, I asked him whether I was being paranoid or was that what people thought. He said yes. His words were "when the ENT referral finds nothing the matter with you, and I (he) dont believe that they will, I would be sent to a psychiatrist.

This made me borderline suiciadal. So confused and consiquently threw myself back into work with a "stop complaining, you are fine stop imagining stuff "mantra I got the ENT referral in November, she asked me whether my thyroid problem had been Graves Disease, so yes it had been, she asked me what my antibody situation was. I explained nobody thought it was my thyroid so no tests had been done for about 4 years. She did some and low and behold I have "high antibodies". Currently waiting for Endo referral. Because of the GPs opinion I could barely speak to her, so only said about the throat pain and shoulder pain and trivialised everything because i wanted to cry and that would convince them i needed a psychiatrist. told 11 week wait for endo now.

If anyone has stuck with me through reading this thankyou.

13 Replies

  • Aw, you have done really well surviving it all for so long with no proper help. Hopefully the endo will be a competent one. You could ask lousine warville on admin to send you the list of endocrinolgists who have been helpful and see if there are any you could get to. The nhs allows us to go to any hospital we choose, its just the doctors who are content with the local hospitals.

    Hyper is really horrible and the doctors threat of sending you to a psychiatrist is meant to just stop you from complaining. Maybe better if you call their bluff and agree to go. After all, if you dont have a psychiatry problem, then you will have a letter saying so, and the doc will have to use his clinical skill and judgement to actually do some proper doctoring.

    I have not been threatened with a psychiatrist but i was threatened with removing meds, due to osteoporosis. I called their bluff and asked for a scan to measure my bone density. Bones of a 30 year old, despite being nearly 60. Ha! :-)

    You have done really well, depite the docs, Dtick to your guns, check out the endos and dont take any more nonsense from the doc.


  • thankyou galathea , im really grateful for even being listened to and just typing it has helped. I will contact lousine. Your encouragement has made such a difference


  • Sorry, it's I forgot to add it....


  • I agree. Ive been sent to a psychiatrist and hes discharged me saying my issues are hormonal. Last month I got a letter from endo saying "psychiatrist" wasnt helpful giving This opinion because my TSH is fine :-(

  • Good heavens, your story is awful! I don't know how doctors could treat you this way. If nothing else you would think they would at least have thought that possibly your problems could be because your Graves returned.

    I'd do what Galathea suggests and contact Louise for the list of patient friendly endos and if there is one near to you choose them.b

    Thank goodness you found a decent ENT specialist and hopefully you are on the right track now. I really feel for you, you've been treated very badly. I have t say I felt like a total hypochondriac in the lead up to my Graves being diagnosed.

    The doctor I saw before I finally fell to bits looked at me like I was nuts as I told her my synods - I could see she just thought I was imagining things and then she sat back in her chair and looked at me and said 'I was needing my holiday'. I was almost in tears with frustration when I went out to my husband who was waiting for me - I knew I felt really ill but because I looked OK in the surface she thought I was - well who knows - if I went on holiday I would be out of her hair.

    Fortunately when I reached the end of my rope I found a fantastic doctor who had my bloods tested, had me on carbimazole with a consultants appointment and a repeat blood test set up - all within three days! So hang on in - there are good doctors out there.

  • Thankyou so much for taking the time to read and respond. Yes I will look at the list, I am losing any confidence in anyone including me. All that drives me is that I need to work and financially it caused a lot of problems when I was off. However my job is one where I need to be fit to practice. Having no diagnosis / mental health diagnosis is like a criminal record. I intend to do a subject access request to gain my GP records and have changed practices. But its all exhausting as you well know.

    Thankyou again its been really encouraging to read your reply

  • That must be so hard Graves is such an awful thing to deal with, yu feel so bad I so many different ways. I lost confidence in myself, found I couldn't be bothered with / didn't even like people any more. I thought I was getting dementia or some sort of mental illness.

    I wasn't of course - once the thyroid was fixed I was back to my same old self.

    Hope your GP records and the change of practice help :)

  • So true! Very strong lady. Well done for not losing it! Keep going and hopefully soon it will Be improved

  • so sorry to read that you are having a bad time Debby. I am relative newbie here myself with much to learn about my autoimmune problem. Am now researching about it which I should have done 10yrs ago because I have been so poorly for months now. I need to get to the bottom of it and feeling desperate and alone, until I found support here :)

  • Just an update, I have received a letter from the Endo refusing to see me., it begins with saying "I would like to suggest an alternative to seeing Mrs (me) in the Endocrine clinic. Goes on to say my past results showed raised Thyroid Peroxidase antibodies, but on biochemical testing (I presume my recent test) no Thyrotoxicosis. Then an apology to the referring ENT Dr saying it is to "avoid raising concerns unnecessarily" and no actual alternative offered.

    I am SO confused and depressed now. The ENT Dr told me that my antibodies were raised at my last appointment yet this letter predates that appointment. She said the throat pain was my thyroid.

    Well anyway thankyou to everyone who tried to help and support me. I feel like a complete waste of space. Losing my grip on everything. I haven't been able to speak since the letter arrived. I'm mid baking a wedding cake for my sister and decided it's rubbish like me so threw a lot of it away. I'm scared that I am shutting down. Definitely don't feel able to talk to any medical person

  • I just wanted to say that I am in the same situation as you. I have had hyperthyroidism in the past, I have a goitre, a nodule of 3cm and high TPO antibodies, but even though in the past I've been diagnosed as having Hashimotos, the ENT referred me to the Endo and her exact words were "I know I treated you 5 years ago but now your thyroid is fine and I'm not sure why you're back here"

    I have lots of thyroid symptoms and my antibodies are still elevated, but no one will help me.

  • Oh wow, I don't understand. I honestly feel guilty like I'm being an irritation and being unreasonable. I thought that having Graves ( or Hashimoto) was an on going process whatever your tsh is at any given time. And surely a goitre needs some investigation .

    I'm grateful for this site otherwise I'd believe it is just me. I hope you get some help xxx

  • Hello Debby,i am afraid i dont have any wonderful medical advice to offer but just wanted to reach out to you and say how sorry i am that you have had to go through such an awful ordeal.It is disgraceful the way you have been treated.I also have Graves Disease ,currently thankfully in remission and although my Endo was a total tosser (delete that bit if not allowed Admins!) he did at least say i would always have Graves even when my bloods are normal.There is just so much emphasis on the blooming TSH and not enough on the underlying problem of the autoimmune condition.I really hope that things turn around for you soon.If you could afford it maybe try to see one of the Endos on Louises list?If you are in Westfield that covers at least part of the cost.Hope you feel better soon ,sending you a hug ..Pipps x

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