Hi everyone, can anybody tell me please, what test they had that confirmed, hashi or graves?

can you lovely people answer my question please, firstly I have a multinodular goitre, rising thyroglobulin antibodies, and a tsh thats going hay wire, hence symptoms.

The problem is although it has been confirmed that my bloods were showing hyperthyroid, nhs wont test TSI. now my blood test are showing I am hypothyroid with a TSH of 378 I in my opinion) my blood test have gone from zero, to 378 in a matter of weeks with ridiculious smptoms, that vary.

However I was wondering about is there another test that will be convincing enough for gp to take me serious.

what other evidence via research or blood test that will be able to show my gp.

thanks x

16 Replies

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  • Just want to double check what you're saying here... your TSH has risen to 378 and your GP won't take you seriously?

  • Hi red Apple appreciate you getting back to me, yes 3 weeks ago blood test show 0,1 high t3 and t4, gp says no meds, as 25mcg had caused this lol dnt think so, anyway my tsh is now 3.78 dnt now what t4 and t3 is as these were private in london. This is doing my head in, my potassium is also elevated and cholestrol and mvp I think.

    To be fair gp hasnt seen these yet, I wasnt going to as they think I have health anxiety. I had so many blood test that scream I have issues, my heart rate keeps missing a beat and it makes me anxious, I can feel it when I take my pulse.

    When lying down my beat is abnormal, when I get up and walk around its back but fast and sometimes really slow.

    what do you think. xx

  • Aha! 3.78 is vastly different to 378 (you omitted the decimal point in your original post above) :)

    To determine whether or not you have Hashimoto's and / or Graves, you need the relevant thyroid antibody tests.

    Here's an excerpt from the antibody info on the main thyroid UK website

    The antibodies that appear most frequently are

    -- Antithyroid Peroxidase Antibody or TPO Ab (Ab is short for antibody) this is also known as Antithyroid Microsomal Ab

    -- Antithyroglobulin Antibody or TG Ab

    -- Thyroid Stimulating Immunoglobulin or TSI Ab

    The first group, the TPO Ab, are found raised in Hashimoto's disease - otherwise known as autoimmune thyroiditis. Here the cells of the thyroid gland are attacked and slowly destroyed. Patients with these antibodies present either have Hashimoto's, or are going to have it with subsequent reduction of thyroid function. (Elevated levels are found in virtually all cases of Hashimoto's disease and they will also be raised in 65% of patients with Graves' disease).

    The next group is the TG Ab. These levels rise as well as the TPO Ab levels in autoimmune thyroiditis, but to a lesser degree.

    The third group, the TSI Ab, exert their effect by targeting the TSH (thyroid stimulating hormone) receptors in the thyroid gland, and activate them abnormally, thus stimulating the thyroid gland to overproduce thyroid hormones. This of course is Graves' disease and these Thyroid Stimulating Immunoglobulins are the chief cause of it.

    Be aware though that even if the antibody tests prove positive, it does not necessarily mean that thyroid (or anti-thyroid) treatment will be given.

  • Forgot to include the link to the antibody info I've quoted above, which came from this page here

    thyroiduk.org.uk/tuk/about_...

  • You sound exactly how I was before the op, especially with the racing and irregular heart beat. I was referred to a thyroid specialist who did all sorts of tests including thyroid antibodies. I too had a multinodular goitre ( now removed). I would ask to be referred to a specialist. Good luck

  • Hi All good advice but regarding Potassium, if high it can be dangerous. Make sure you do not take any magnesium except under close medical supervision, ( except in food ) with the special blood test.

    Best wishes,

    jackie

  • OMG jackie, my potasium is elevated, in terms of magnesium, I have been having baths with flakes and I have felt worse than ever. I am currently taking jarrods b12, is that ok to take? i have cut out bread and other contributing factors.

    still debating jacks which specialist to see? was going to ask you to look at a site I found interesting and ask your opinion?

    should I consult with this top thyroid/ autoimmune speciaist, not in the UK, or consult with the one I have been reccomended. mmmm dont no really confused.

    thanks jacks xx

  • Magnesium is easily absorbed transdermally, which is what is happening with your bath flakes. If you are not actually magnesium deficient, then supplementing is likely to cause symptoms such as muscle weakness. I found this out the hard way myself a few years ago!

    If you eat a diet rich in magnesium containing foods, supplemental magnesium is unlikely to be needed for most people.

    There's some useful info about magnesium on the vitamin D council website. Worth reading.

    vitamindcouncil.org/about-v...

  • Thanks red Apple xx

  • Hi bath flakes should be OK but I would look at your diet first, also ideally if Potassium high or near top of range have a magnesium blood test, as magnesium tiny range.B12 or iron is considered OK as wide good range, It would be best to have feritin , B12 and Folic acid tested the GP should do that OK + diabetes is a good idea, similar symptoms as hormonal and autoimmune. Glucose and HB1ac, rarely refused by GP. Have you had your vit D and calcium checked. ?If Potassium high , you need other electrolytes tested, sodium will have been done ( Us and E`s, kidney function) and corrected calcium , separate test and the magnesium. All electrolytes and must be in range. Make sure you have plenty of fluid ( K, Potassium ) and if on diuretics even more important. High potassium does put you at risk of acute kidney failure but so long as GFR ( kidney) test above 60 that is fine. When mine is 25 I am inacute kidney failure, coma, etc, not n ice! Mine is low anyway, 40 is bearable, below it effects everything.My endo who is very good does look after all these things and lots more. They all should, I do have loads of autoimmune things too. However, it is hard to find a good one. With complicated thyroid do not rely on a private thyroid doctor, I mad ethat mistake ,although good.If you see an endo they will look after all this and a lot more. However, do not rely on GP`s choice. Look up hospital sites for names, cross reference to private hospitals and then look on WEB for CV`s and ask people if possible, Good essential and nice ideal, some people do muddle them! I do see lots of consultants as very ill but still endo wonderful and if good ,they cover so many things, They deal with all endo system and whole body so of all cosultants have the widest knowledge. They will advise if you need to see another speciality too. I hope that helps, do get back to me if I can help further. Have gone through a lot in last 30 years so plenty ( too much) of experience!

    Best wishes,

    Jackie

  • Merrisa may have pressed the wrong button, hope you received this OK.

    Jackie

  • Phew, lol jacks, My Magnesium is normal, but what I have read is that on 1% is actually in the blood and the other Magnesium is in the cells.

    Im anxiuos about asking for refferal as g.p sends my medical history arggghh and they only seem to look at that.

    saying that i do have evidence of abnormalities, if they want to percieve me as being a hypocondriac, then they can, if it makes them feel better and I will sling in the towel, as their analasis is compounding my stress and giving me gp phobia lol lol. I have been offered a refferal to a endo, the one I paid private for, the one at my local hosp ( not the professor) I am not going because when I seen him, although very nice, he wouldnt look at my private diagnoses and gp had sent him a letter before I got there, noting I think, no cause for my smptoms. arghhhhhh

    Therfore he written to g.p very nicely and noted that I may never find the cause of my issues. You are the weekest thyroid goodbye lol

    would you go back and see him in this instance?

    I really do not want to take the chance of him saying its physcological, that will mean it going on my medical records as this is already there and another consultant adding to this will cause me great stress.

    Merissa xxx

  • Hi Merissa, Yes I know exactly the problem, until I had years of struggle I had mentally ill on my records, wrong diagnosis. ( thyroid and heart ) Finally had it removed, still other rubbish though. however, now I have good consultants, , when I first see them I take a hard copy , from my PC of my own records, very clear and all diagnosed, I find they prefer to use mine than the GP`s as they say they are correct.You do have to have really good consultants from good hospitals. I never see ones the GP suggests! When I first saw my endo , she knew it was all rubbish.! I would do what I always do, look on a big hospital ( reaching ) and then do as I described. Forget the other one and certainly go to your choice. It is hard finding good doctors, I have had some terrible ones and lethal mistakes over the years. However, I learnt to sack them as needed and now see some wonderful ones all found by me or referred to from my good consultants. You do really need help. I saw 2 private doctors for thyroidas I was desperate and then by chance discovered I was having all the wrong treatment because they are just thyroid doctors , however good.

    The magnesium test is not perfect. however I have to have a lot of magnesium and a drip when in hospital. I have weekly tests and there is a huge difference according to my doses etc. The best potassium test, expensive, measures potassium in the cells.It is true that no blood test is perfect and a good consultant ( not usually GP) goes by lots of things including blood tests..I certainly would not see the endo you saw again under any circumstances.

    I really do know what it is like as I suffered for years from Hashimotos, with no help and no DIY of any sort then! When desperate one tries anything but it is important to take care of oneself, no one else will!

    Best wishes,

    Jackie

  • big hugs jacki, any suggestions on NHS doc that deals with Autoimmune D ? bigger picture lol I do feel though and agree with your kind self, that its not the thyroid its a autoimmune thats attacking our bodies and the attack needs to stop.

    its really is pants but feel a sigh of relief when I speak to you, yer me to, made mistakes through money away, I wonder if the endo you suggested would bobo my case?

    I was told I had madnesium issues, by a therapist based on clinical presentation, muscle cramps ans so on, but blood test was normal.

    Im in the process of defending myself to my g.p with written factual evidence, then I am on my own and I will tell the gp that if my issues are health anxiety then I will not get well as it is all imagened lol .

    maybe i should bang my hand on the table on the way out and turn and say, " that didnt hurt its all imagined" dangerious position to be in. My husband good though at the min. xx

  • Merissa, Sorry but that is an endo as hormonal.As electrolytes etc.,they can also be cardiology but not the D. Other consultants are allowed to diagnose it but an endo is meant to treat it. They are not allowed to. It is very specialised. My Rheumatologist told me that and my other consultants even nephrologist ( kidney which is relevant) said they are not allowed to. Some GP`s do but not very knowledgeable about it.If D low it is essential to have a calcium test ( corrected calcium ) before treatment and increased slowly after re tests. ( 3 monthly until stable ) If calcium high you have to stop the D , I have had to although I have osteomalacia, adult rickets,Caclcum high more dangerous than D low. I would have a cheap private test, first. Blue Horizon do the best test, which is the same as all the private hospitals do, shows sometimes when the other one does not. through TUK , I pay £55. However, trough TUK or direct you can do a finger prick, blog standard NHS one at City Hospital in Birmingham, to do with their research. Results within a week on PC aftr phoning and paying for the kit,I have about 12 autoimmune diseases, not good! They did come on gradually! High calcium and low sodium can also cause really bad muscle cramps.

    My husband no help! I have learnt you have to fight lot of doctors, not in my nature or up bringing but some times the only way, it is your health after all.I now use anyway I can to get the right and safe treatment.

    If I can help further do contact me or send me a PM, click on name.

    Let me know how things go anyway.

    Good Luck, it is a battle you need to win!!!

    Jackie

  • Thanks Jackie, I will PM you . xx

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