I was wondering if a kind soul can help me again pls this site helped me so much and I feel I need some support again please
I recently went privately and was told my thyroid peroxidase antibodies are very high level 274.0 range is 0-34 iu/ml I was wondering is this something to worry about or is there something I can do to help it come within it’s range I was diagnosed with Graves after a very long period of stress and I was in remission just almost a year now I was hoping someone can help me explain what I can do I’m so worried again x
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Zahrazori
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You were diagnosed with Grave's, yes, but did you actually have it? Did you every get the results of your TRAB test?
TPO antibodies usually mean Hashi's, and your blood test results two years ago looked far more like Hashi's than Grave's. Do you have any recent TSH/FT4/FT3 results? Are you still taking antithyroid drugs?
I did have Graves and my trab results were high my recent blood test showed all within range spoke to my endocrinologist who said i need to be referred to rheumatologist I definitely had Graves but I am in remission now I have stopped medication for approximately a year now.
From reading this Forum since 2018 I am sure you will have read daily of the importance of obtaining copies of ALL test results with ranges - results that are legally yours 😷
Mine are also high at 600 and they have been like that for a couple of years. I have tried selenium and going gluten free to lower both that and my high thyroglobulin antibodies which are 4000. I actually feel well at the moment so they don't reflect how I feel but just show your thyroid is under attack. They did once drop to 2500 and I don't know why they did that but when I had another blood test 6 months later they were back up to 4000. It did alarm me at first but I now know there is nothing I can do about it unfortunately.
I don't have a consultant anymore because he tried to offer me counseling instead of treatment. I now look after my own thyroid health because I have lost confidence in the NHS when it comes to treating my condition. Even when I was admitted to hospital with a thyroid storm a year ago they only tested the TSH and nothing else. I have no idea about pregnancy because I did not have this when I was pregnant with my 2 children. I do remember that I lost all my baby weight within weeks without dieting so I do wonder if I had something wrong with my thyroid even then.
I am so sorry for your loss xx 10 years ago I was told I was suffering from the menopause when infact my TSH was suppressed at 0.002. This went on for over 2 years and I had "delusional" written on my notes because I kept insisting something was wrong with me. After being untreated for that long my nails were dropping off and my head was balding. I lost so much weight I was a size eight and I looked dreadful and my family thought I had undiagnosed cancer instead of Graves' disease. I have had a lot of help off Elaine Moore's site, have you seen it?
The doctors make you so ill similarly the same happened to me they wouldn’t believe me too they said menopause it’s really sad that these doctors can destroy lives too
I was told I had Graves' 10 years ago but some members think the diagnosis might be wrong so I have requested my records to see why my Endocrinologist came to that conclusion. Last year I had a ultra-sound on my multi-nodular goiter and the Consultant said it looked nothing like someone who was suffering from Hashi's and she had seen hundreds so I do think I have it. At the moment I feel really well and I think I am in my second remission my last one lasted 4 years.
Where u on a specific diet or did anything different to stay in remission?
I’m really hoping they find a permanent cure for Graves it’s a horrible experience I believe they are doing a research for Graves have you heard about it? Apitope
I don't know what I did if I am being honest. I think it has a lot to do with stress because when I first got it I had been through a traumatic time watching someone I love die a painful death. I try not to have more than one coffee a day because that can make me feel wired and a occasional glass of wine. When I had my thyroid storm last year I had attended a friend's wedding and had over stimulated myself by drinking too many coffees and champagne. I stayed over night in a hotel and hardly slept all night. When I got up the next day I stupidly had another couple coffees with my breakfast and then I started to get palpitations and chest pains. I told my husband to take me home which was an hour away. Just as we were driving out of the town I started to shake uncontrollably and my heart was beating too fast and I was sweating. I got him to take me to the nearest hospital where I collapsed in the waiting area in A & E. A couple of nurses carried me into a side room and had to hold me down to take a ecg. I was very scared and I thought I was having a heart attack but it turned out to be a thyroid storm. I was discharged after a few hours but later that evening I had another attack and had to call a ambulance because I felt so unwell again. Luckily I did recover and didn't need to take PTU because my levels were within range but high. I hope to have another private blood test once the coronavirus is under control because at the moment I don't want to attend a hospital for a blood test which I have to do because I cannot do the test myself.
Lora7again I’m so sorry to hear you went through such a difficult time similarly this happened to me I lost my dad and he was very poorly I was his only Carer it was very traumatic seeing him so unwell also had to live with a abusive brother who emotionally and physically affected me this all made me so ill that I was in a bad state I really do believe stress can affect u so much pls do stay away from stress and love ur self I try and keep myself happy now
You have been off carbimazole for a year? TPO antibodies could indicate either Graves or Hashimoto's. It is likely since u previously had confirmed Graves, the high TPO could be an indication that the Graves will relapse.
I don't think your doctor had your TRAb level tested before stopping the carbimazole? According to the 2018 European Thyroid Association Guideline for the Management of Graves’ Hyperthyroidism, TRAb should be tested to determine if u are suitable to stop carbimazole and try for remission. See here-
8. Measurement of TSH-R-Ab levels prior to stopping ATD therapy is recommended, as it aids in predicting which patients can be weaned from the medication, with normal levels indicating a greater chance of remission.
9. Patients with persistently high TSH-R-Ab at 12–18 months can continue MMI therapy, repeating the TSH-R-Ab measurement after an additional 12 months, or opt for RAI or thyroidectomy.
Even if your TSH FT4 FT3 levels had been in range but if your TRAb is still above range, you should continue on a low dose of carbimazole. Carbimazole taken long enough, will bring TRAb down to range or zero.
I have had extremely high Peroxidase levels for over a decade and have a multi nodular goiter. My GP insists on 6 monthly blood tests which I have had and also kept copies of results. This is must as only you can take control of what is happening.
I have tried a gluten and diary free diet (mostly adhered to it), selenium (or as an alternate three Brazil nuts a day), B12, healthy eating and moderate exercise. It all helps as in ten years my levels have not increased. I am not on medication although this may change as my goiter is getting bigger and eventually I may have to have it removed which means taking thyroxine for the rest of my life.
I have to say that I have never felt unwell in the past decade. I tend not to dwell on negative thoughts as staying positive works wonders. I think suffering from stress is really harmful and I would work on preventing this. Do look after yourself - it will honestly help you. Take care and stay safe.
Thank you Holby18 I totally agree how stress can affect u immensely this is what led to my Graves where do u get ur selenium from? How much mg or tablets do u take pls
Hi Zahrazori, I've just seen your query regarding miscarriage and I believe TPO can be a cause. I was referred to the Recurrent Miscarriage Clinic after 2 losses (incredibly lucky that my consultant believed in testing every woman after the first 2 losses) I had a whole raft of tests, the only one being high TPO (about 500) He believed this was the cause - as it would mean I have adequate thyroid function normally, but not enough to sustain a pregnacy. I had to start 50mcg Levo before trying to get pregnant, and hey presto, 10 months later I had a healthy baby boy. I've remained on Levo ever since, as my GP said this was safest for me - still wonder if I could have been weaned off it though.
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