• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Comprehensive Lyme and Tick Borne Disease Testing

    Being offered by my Lyme doctor in Philadelphia http://lymetestinguk.com
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    Thyroid Lab Interpretation

    My atrial fibrillation, which I'd had for around 35 years, disappeared completely when I started treating my thyroid. My TSH is suppressed now at below 0.5 and my FT4 is around 20. Cardiac symptoms are a classic sign of under medication or non medication. Yes, if you do become over medicated...
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    Are my problems ME/CFS related? So very very scared its all over for me

    As your problems started when you changed from hydrocortisone to prednisolone my feeling would be that it is very possibly they are adrenal related. Have you ordered the 24 hour saliva cortisol test from Genova UK or Blue Horizon? I can identify with the inability to cope and the breaking...
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    I think I have CFS, right?

    Have you had your thyroid tested? You need TSH, FT4 and FT3. In the UK most doctors will try to refuse to test FT3 - yet this is the vital test and T3 is the active hormone used by every cell in your body. You also need to have iron, folate, ferritin, Vit D and Vit B12 tested. All need to be...
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    I hear you, I really do. But why do you want my BP dropping when I stand to be ME, when it's a classic adrenal symptom, even the cardiologist admitted that, and it has stopped happening now I'm on adrenal support (HC and glandulars). Why do you want the fact that I am still improving and still...
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    In retrospect I think I had a few symptoms from a small child. My mother always said she dreaded the winter when I was small cos I was always ill. I remember being made ill by the smell of bleach when I was about 10, and having this weird thing where I'd go to school in the morning and feel...
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    ME like illness has many causes. Sounds like for you it might be chronic infection. In my old ME group that I belonged to there was a member who had to have an operation to remove, deeply seated infected tissue. His ME went.
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    Hi Valentijn. For me thyroid wasn't the answer, it was the clue. I looked at my old notes recently. When I first got ill my thyroid function was almost hyper, not the hypo I now am. I know now I've been hypoadrenal since at least the age of 10, which was when I first starting weird reactions...
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    Sorry Barb. Maybe I'm being dense. Are you saying the saliva cortisol test isn't scientific? It's give a result with numbers and ranges.
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    I have this idea that a lot of people diagnosed with ME/CFS probably have adrenal or pituitary problems. There's a doctor in Hartlepool, Dr Chandy who was diagnosing and treating hypoadrenalism. He has recently been stopped by the GMC. Here he is on youtube. At 6.13 he says "we GPs are not...
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    Valentijn. For me, the post exertional malaise and orothostatic intolerance turned out to be hypoadrenalism. A cardiologist looked me straight in the eye last year and said, when I told him my blood pressure dropped when I stood up, "that's typical of an adrenal crisis". Take a look at this...
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    Are you a Facebook user? There are some excellent groups on there where you can post your results and people will start helping you. You could post them here and I would be happy to take a look, but remember I AM NOT A DOCTOR, just a patient who finally found out what was wrong with her and...
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    Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

    I will guarantee 100% that your thyroid was not fully tested and that if T3 works for you then you are, indeed, hypothyroid. You need to go back to your doctor with a written list and ask for the following tests: TSH, FT3, FT4, Vit D, Vit b12, iron, folate, ferritin, thyroid antibodies. You...