Endo says high antibodies will not give any symptoms

Hello,

I just wanted to share want I was told today on the phone by an Endo. I have been very ill for one year now and have been fobbed off so many times so decided to write to my MP as I am just getting no where. My MP sent my letter to the hospital which was passed on today to the Endo department. Surprise surprise I had a call which is a first from the head doctor for this department. I have been diagnosed with Graves and although my tsh levels are only just under range, T3 & 4 ok as I am am on PTU but TSH receptor antibody 2.2 range 0.50 anti-thyroid microsomal ab 199.7 no range then it says anti TPO result positive. He asked me my symptoms I told him aching joints and muscles feel extremely tired all the time, in the mornings I am so stiff I have difficulty getting down the stairs, memory loss, foggy brain, I can't walk far and feel like I have the flu most days and said I have never felt so ill. He said none of my symptoms was to do with graves, he said the PTU is keeping it under control and high anibodies do not mean anything and would not cause these symptoms. I am waiting to have RAI but there is a 12 -18 waiting list, he told me the RAI will not make a difference to how I feel. Any advise would me most welcome. Thank you.

37 Replies

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  • Rosie2-2

    Maybe this head doctor was having a bad hair day.

    I feel for you and am sure that many others here will say the same.

    thyroiduk.org.uk/tuk/TUK_PD...

    I have printed it off for myself.

    Next time you see your endo, tell him that Graves disease and Hashimoto's thyroiditis/disease co-exist.

    Please do ask for a second opinion, you are entitled to do this.

  • Thank you so much, that is really helpful. This doctor doesn't like it because the letter I sent to my MP was sent to the CEO at the hospital and he has to explain why I have not been treated as I should so he will try to blame it on something else. I will print that off and take it with me.

  • Who cares what they don't like. If they were doing their jobs properly you wouldn't have written to your MP. Well done for standing up for yourself!

  • Hi your symptoms sound like mine but I'm in the UK we only test tsh I'm o n 300mgtthyroxine good for you tho complaining

  • I would say you have Hashimotos thyroditis if you have positive antibodies.

    Look up Datis Khazzarian, great dr who explains things so well. He also has a couple of good books.

    You need to be gluton free with Hashimotos, I've also stopped a lot of dairy. Milk was a bad one for me.

    If also recommend looking into NDT as Levothyroxine is just T4 whereas NDT has all the T's we need. I changed a couple of months ago (have to buy on line as NHS won't supply) my brain fog has lifted and I have mostly more energy although still itching.

    Good luck!

  • Is that true? NDT has more in it than the Levothyroxine? I assumed they were different only in their source. Thanks

  • NDT has T4 and T3 and probably T2, T1 and calcitonin - all the thyroid hormones. Levothyroxine is just T4.

  • Yes it's true. NDT is natural thyroid from cows or pigs I believe so contains T4,T3,T2 and T1

    Levothyroxine is just T4

    Very important if you are not converting T4 to T3 which is the natural process.

    If your TPO test is high then you have Hashimotos (like me) or graves. Both autoimmune inflammatory diseases. So you absolutely need to be gluton free to feel better.

    I also think NDT would be better for you although check with someone like Clutter or any administrator as I'm still learning too! Sadly you can't get on the NHS but the endo should be able to give you a private script.

    Just reading a great book that I can recommend called

    The Immune System Recovery Plan by Susan Blum M.D.,M.P.H

  • Thank you for this, I read and read and read and still failed to understand this fundamental fact! I will get the book too. Having been diagnosed only 3 months ago I have yet to feel any change at all in my symptoms as I'm only on 50mg of Levothyroxine. I feel almost not able to function because of fatigue,although I have a Buisness to run so I have to, (sometimes sleeping under the desk for half an hour just to get a bit of relief!) I have just had bloods done for the first time since treatment began so we'll have to see where things are up to now and what to do next.

    Many thanks

  • It is all so confusing. I've been reading everything for a year and only starting to get to grips with it now!

    Another person to look up is Dr Datis Khazzarian he has great info and makes it all a lot easier to understand. He also has good books.

    Good luck!

  • I think I heard about her

  • Ps

    That Endo is a moron!

  • Katepots yep you are right that Endo is a MORON! in capitals. I get so annoyed at the lack of care and it's world wide. x

  • I have hashimotos ,I say hell with these doctors lying ,our Symtoms they are real and it's horrible .......I had this for 8 years ,or more I've been so sick ........I ve had one option after another and I mean option let them live it !!!!!!they need to help us !!!!!!

  • Me too, over 25 years before I was diagnosed and that was because I paid for blood tests and saw an endo privately!!

    Sooooo angry.

    I was planning a march to Downing Street but all on hold with Brexit as they wont listen now.

  • Hi, Are you taking Carbimazole? I was on that for 18 months (UK), this is standard time to be on it before taking RAi. I had 2 x RAi within 14 months of each other back in'94 -'95. When I was very hyper and very ill, I remember the itchy skin, my skin would raise in big welts where I scratched and would stay raised for a long time. GP at time did not connect it to my Thyroid condition. I was given anti histamines for it. After treatment I was told I would go underactive and that it would be easier to treat!!!! I believed all this c..p! I was given a yearly TSH test and told I am fine. BIG JOKE. I just got more and more ill. The Carbimazole was stopped and I had no meds until 2011 , given a meagre 25mcg until last September. Thanks to advice here I discovered I have Hashimotos and my B12 was on the floor . I had been prescribed Adcal in 2014 and was not told about taking Vitamin K2 mk7. Through pushing it for test last year I discovered Too much Calcium in my blood and I DECIDED to stop the Adcal and use the K2, it is under range again now.

    You do get these symptoms with Hashi's and you should be medicated, you are being neglected just like many others have been. The good thing is..you are aware of it now and not 20 odd years down the line. I will be forever grateful for finding this forum and all the wonderful people who take the time to help. I am starting to feel much better than I was and at least know what and why I am feeling the way I do. My gut issues are improving ( I am sure they would never have got so bad if I'd gone gluten free ,and not been fobbed off with PPi's etc over the years) Be pushy, go gluten free look after your gut. All the help is on this forum, ask away and the help will come. You are PRECIOUS and worth better treatment. I say get on the boxing gloves and start fighting back.

    Lots of love and best wishes xxx

  • Hi, thanks for your reply. I took Carbimazole 11 years go but I had a bad reaction, could not move, my muscles seized up ankles swollen and a rash I was then given PTU instead which I was ok, like you I took it for 18 month and was ok for a few months then it all came back so was on PTU for 5 years and then came off of it and this awful illness returned last June 2015. This time they have decided to treat me with RAI, I am back on the PTU but the symptoms are still bad. I have had a doctor ask if I am depressed and an Endo asked the same. They love to blame that when they don't have an answer. I am in the UK, the waiting list for RAI is 12 - 18 months. I am just going round in circles. The Endo that phoned me yesterday after the complaint said he will see me when he can. So I am waiting yet again for another appointment. I really don't have any faith in any of them. He said my symptoms are nothing to do with Graves disease and the antibodies do not mean anything, when I said I understand the antibodies are attacking the good as well as the bad so why are they high, he said there is nothing for them to attack. He also said he will look into why I am like this when he sees me but sometimes nothing shows up. I really feel like paying to see an Endo that knows their stuff. Now I have complained I will need to follow this through as they have to report back to the house of commons.

  • You can ask to be referred to a different Endo in the NHS. If there is nothing for your antibodies to attack why is he wanting you to have RAi.. ask him that. What would be the point in taking it. Your antibodies are attacking your thyroid. He is a great big PLONKER. Good for you complaining keep up the fight.. x We are all on your side here and know exactly what you are up against. x

  • He told me that RAI won't make any difference to my symptoms. I thought the same whats the point of taking it. What a plonker you are right, he is just trying to cover his self and his junior doctor that wrote to my GP saying I was well! This is why I contacted my MP it was the final straw. Thanks

  • Yep, I recently had a conversation with my GP trying to get me back on statins. I told her that I had lost a brother of heart attack at 54 yrs, two other siblings had heart attacks.

    She had a big smile on her face and said so you have family history all the more reason to take them...I replied 'none of them had high cholesterol! Her reply 'You don't have to have high cholesterol to have heart attack'. Exactly so why should I take something that's doing me no favours. x another MORON x

  • Another statin refusenik - good!

  • Hi, I have turned into a bit of a rebel lately.. There was a headline in one of the papers last weekend.. 'Statins can help to prevent cancer'!. I didn't bother reading the article.. I just thought, yet another way of getting this poison into the population. I guess they have a stock pile to shift. x

  • PS, if that Endo would like to tell all of us with Hashi's that we don't have symptoms he will be up against a legion. x

  • I paid to see a private endo and the only difference was that i got seen quicker. he refused to test T3 or give me a scan yet i was paying. wish now i hadnt wasted money as i got no-where.

  • I'm like you I'm in so called remission for graves but my antibodies are still very high I too have joint pain insomia my dr says the same antibodies do not give problems what I don't understand is why check the antibodies if they say they don't cause problems ? I have spent a fortune on osteopaths

    Vist b12 supplements high dose vit d and a £1000 new bed with gel mattress I live off ibuefene

    I'm only 55 and I'm having more and more days when I think I don't want to go on

    As the thought of the next 20 plus years like this is unbearable

    Dr reaction to that I'm depressed have some anti depressants

    I'm not depressed well maybe I am but it hasn't got a cause that antidressants can cure as it's the pain that's causing it

  • I'm in remission from Graves too. I test my own blood with the Blue Horizons fingerpick test. I started because I was never able to have my T3 tested in the NHS but now I do it to keep an eye on my antibodies. I was diagnosed last September with inflammatory arthritis and as that was yet another auroimmune condition to add to my others I decided to go totally gluten free to try and get rid of the antibodies. I didn't ask my GP - I just assumed that my body would be better without them.

    Between last September when I went GF and now, my antibodies have reduced a huge amount - in September my Anti Thyroidperoxidase was 31.3 which was ok it should have been <34 it is now <5.0, my Anti Thyroglobulin was 401.0 back in September - now it is 140.8 still too high - it should be <115 but it has come down a lot.

    Once you get the hang of being GF it isn't difficult to do. I joined Coeliac UK and got their 'bible' - a list of every GF food product around, we also eat out quite a lot and more and more restaurants are providing GF food.

    Have you been tested for arthritis or rheumy problems? Like you I've got the Tempur bed - that helps a lot - for years in the morning I felt as if someone had jumped or driven a bus over me during the night. I was sure I had fibrositis. Eventually when amongst other things I had to buy plastic handles to put on plugs to be able to pull them out of the wall and I used to have to use both hands to press my asthma inhaler I went to the doctor and was fast tracked to the rheumatology unit of my local hospital where I was given a course of stetoids which worked wonders and I now take hydroxychloroquine - my pain has pretty much gone and when I get up I no longer have to wait at least an hour until I can move about.

    Some doctors just don't seem to realise that you are not depressed - it is their attitude to you that is so depressing.

  • Thanks fruitandnutcase

    I too have gone gf I have had some improvement over last year but its exhusting have to constantly having to fight your body my daughter who is 26 has lupus diagnosed when she was 8 but I have been tested negative although I'm mildly ana postive I try to remain postive mainly because she. Has so much to put up with in her life and even though she is diagnosed we. Have constant battles with her rheumy your right when you say dr don't realise that depression is not treatable with drugs if there is a reason to be depressed eg constant exhaustion and pain I'm a postive person on the whole

    Thank god for This site it's what keeps me going

  • Tell me about it, they have said the same to me, it is dreadful they are really symptoms, I am 59 and this is the third time in 11 years this has reared it's ugly head. My GP said you are 59 maybe you are not aging as well as you hoped and gave me a depression form. Anyone feeling like they have flu every day would be be fed up and can't do the things they used to, if we are depressed its these doctors not giving us the proper support. Good luck xx

  • Note that there is no blood test for depression, but GPs will prescribe for it with no evidence that the patient has it. So why won't they prescribe for other symptoms? Oh wait ... they get funding points for prescribing ADs.

  • A very, very good point.

  • We get depressed because we go unheard and it is soul destroying, when we know how we feel but they have no answers and speak glibly over us.

  • A very good retired doctor whom I've known a long time was listening once to my complaints about his colleagues. One complaint was about being treated as a depressive instead of someone with autoimmune illness. He said, "You are not depressed; you are oppressed by your illness."

    Such perspicacity from a doctor is very rare.

  • Thank goodness there are some decent ones out there.. it is reassuring to hear .

  • They are all for treating various symptoms... not treating the cause correctly.

    Gp's earn a lot of money from dishing out prescriptions.. x

  • What are your TSH, FT3 & FT4 results (with ranges) as your symptoms sound more hypo than hyper. What dose of PTU are you on?

  • Hi sorry for the late reply, my TSH is now 0.32 Range (0,35- 4.94) T4 12.0 Range (9.01 - 19.05) Its my antibodies that are high THY PEROX AB 72 Range (0-60) TSH RECEPEPTOR AB 1.9 range (0- 0.4) I am now taking 100mg PTU. Thanks x

  • Rosie2-2, I know it's not much comfort, but the medical profession have been ignoring the implications of autoimmunity for a long time.

    Back in 1998, after I'd already been ill for 19 years, I was referred to a rheumatologist. She found I had all sorts of antibodies - TPO, Tg, ANA, +ve Rheumatoid Factor, GPC, etc. She dismissed them all as "antibody soup that means nothing". She was prompted by her registrar to investigate me for Sjogren's Syndrome, but I 'failed' the very crude tests on the day. The symptoms and signs of AI conditions wax and wane, as you know.

    I think it was around that time I finally gave up on mainstream medicine.

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