Hashimoto's & now Systemic Lupus !


Diagnosed Hashimoto's 12 months ago..after bad reaction to Levothyroxine was finally put on 30mcg daily of Liothyronine. Still no relief from symptoms. Have asked GP for Armour ( or any natural dessicated ) Refused point blank. Feeling so ill, am wanting to at least give it' a try.' Have found plenty of online places to purchase direct, but unsure of dosage ..any help would be gratefully received.

Have also now been diagnosed with Systemic Lupus ( seeing rheumatologist next week )

Thank you

12 Replies

  • How are your levels of Iron - Folate - Ferritin - B12 - VitD ? Having them optimal may help you to feel better. As you have Hashimotos I just wondered what protocol you have adopted to reduce anti-bodies ? Take a look at Lyn's post today about the The Hashimotos Institute on-line summit which is free... :-)

    I have Hashi's too and Crohns - so am happy to share info if needed :-)

    What supplements are you taking ?

  • Hi ,

    last tests for all those were 'normal ' ..not sure what you mean about what protocol adopted for reducing anti-bodies.. asked doc to test levels last time but was told " we don't need to re-test, they are elevated so it's a pointless exercise to re-test " !!! Also asked GP about taking supplements, he said they are a waste of time !

    At the end of my tether with it all to be honest :o(

  • Just wondered if you had gone gluten free to reduce the anti-bodies - others have other strategies. Did you look at the link to the Hashimotos Insititute - excellent talk yesterday by Datis Kharrazian.

    Supplements are important - if you read the books out there on Hashimotos - they give excellent advice.

    Hashimotos is a lonely journey and its all about reading and learning - Docs know very little - apart from Functional Medical Practitioners in the States....

  • It may be that your dose is not high enough yet. Are you able to increase it very slowly, leaving a week or two between each increase? For instance try 35mcg and later 40mcg. You will need to cut up tablets of course but it works for me, with the end of a sharp knife or a pill cutter. Ideally you should increase until symptoms improve but I suppose you have a limited supply of tablets and perhaps need to talk to your GP or endo for a new prescription.

  • Hi there,

    have asked GP if I can increase dose..he said NO ! .. so perhaps I'll do it anyway - very slowly as you suggested.

    Many thanks :o)

  • Always get a copy of your blood tests for your own records. We are entitled to them - some give them free and some ask for a nominal charge. Make sure they also have the ranges.

    Never take 'normal' as a reply. It is a reference range they use in the labs and 'normal' doesn't reflect how we feel if undermedicated. They should take more notice of symptoms.

    I hope you don't have lupus but usually we find that if we have one auto-immune we usually get others.

    If you can get a copy of your latest blood tests (don't take your medication before your test, take it after and have it as early as possible) post on a new question for comments.

  • Yes, I do normally ask for the 'numbers' as was told was normal range for Thyroid for years, when I wasn't !.

    Definitely have Lupus, they re-tested me in case of a false positive, but it came back showing both HLA positive and DSDNA positive, so it's definite unfortunately, also tested me for Addisons, but said " you only have Chronic Adrenal Fatigue" !!

  • I am sorry you are now diagnosed with Lupus and hope the treatment is good. I think most of us if we have one autoimmune get others. I have three at present.

    The doctor should treat you with sufficient thyroid hormone to eradicate your clinical symptoms but now you have Lupus the symptoms may overlap unless you can distinguish between them.

    I hope you feel better soon.

  • Hi doozie

    My daughter has lupus was 8 when diagnosed she is now 25

    Sadly not a day goes by without some sympton or another she does have good and bad days but a lot of your symptons could be to do with lupus there are medications that help the lupus but I wouldn't play about with you meds until you have seen rummy next week as a lot of symptons are simalar

    The one thing my daughter has found is cutting gluten really helps her symptons but she also has to cut out Durham wheat which is pasta as well

    She is quite inspirational to me as she has a postive get on with attitude although as her mum I do know when she is putting on brave face it's a tough illness but she has had a few remiss ins one lasted a year wishing you all the best

  • Hi, my daughter has had autoimmune arthritis from a young age and fortunately has the same attitude as your daughter but as a mother it breaks my heart.I would take it for her in a heartbeat, So proud though sounds like we have 2 amazing daughters x

  • Hi p1pp1ns

    I know what you mean it's been heartbreaking we nearly lost her 3 times in her hormonal teen years it seems to have settled a bit once she got over puberty unfortunately she has now got signs of hypo so we are waiting blood test results

    I felt so guilty when I was told I have graves and hashi as they told me sle is genetic so if i have auto immune illness I feel I must of past it on to her she said yes it's a bummer but she rather have me as a mum and lupus than not that made me cry

    Yes they are amazing to cope when so young but as she says she dosent really no anything else

  • Exactly how I felt! I have Graves too and felt I had oassed on the auto immune gene so I know just how you felt .What a lovely thing she said you must be an amazing mum x

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