Fibromyalgia Action UK
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Fibromyalgia,hypothyroidism, high ferritin

Hi, I have had hypothyroidism for 12 years. Was diagnosed with fibromyalgia 5 years ago (although suffered symptoms for years prior to this). I was tested for ferritin serum 6 months ago ,this was raised ,levels 392. However,wasn't told about this till visited G P 2 weeks ago with heart palpitations. Was sent for flash ECG and liver blood tests. Curiously received several text messages to contact G P ( from labs I assume) . When I contacted G P practice was informed by reception, no further action required. Still having palpitations and bad joint pain. Very confused and slightly frightened by heartbeat. Also thyroid t s h low despite 175 mg Levothyroxine. If anyone can help. Thanks

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Hi

Do you know what your TSH readings are ?

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Hi, Rose. No I don't. Doctors just say it's low and imply that I'm not taking my tablets.. this has been going on for years. Feel very unwell, but they don't seem interested or concerned. Thanks for the reply. I will ask when I speak to them though. X

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Hi Dylan555. I have been bounced around from Dr. to Dr. I have kept a copy of all of my blood-work and tests. It has helped me when I go to a Dr and they do not have the latest test results. Also, it has helped me when the Dr wants to order a test that I have already had done. I keep all of my medical copies in a 3 ring binder so that I can keep adding to it as more Dr's run more tests. I also have hypothyroidism, an elevated ferritin level and fibromyalgia. Good luck to you.

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You must get a copy of your thyroid results, just ask at the surgery, it is your right to have them so they can't refuse. It does sound like your thyroid is possibly not well regulated, post your results on the HU Thyroiduk forum for advice.

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Hi, yes I'll request a copy,and go on thyroid site. Thanks for the advice,appreciated.x

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Hi there

I think your best bet would be to have a look on the HealthUnlocked Thyroid forum.

They are extremely well informed on there.

If you get more concerned about your heart rate, please do contact either 111 for some advice or if it is really bad, do not hesitate to call 999 for an ambulance.

Please do stay with us for your Fibromyalgia concerns, but I do think that the Thyroid Forum is what you need for this particular query.

Please do let us know how you get on.

Lu x

Administrator

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Hi, yes I will visit thyroid site. Thanks so much for your concern and advice. I'll keep you all posted. X

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Hi Dylan555

I really am so truly sorry to read this my friend. Personally I would be more concerned about the high ferritin levels more than the thyroid. As the symptoms that you have described could all be connected to haemochromatosis, which is a sign of high ferritin.

I have pasted you below an excerpt of haemochromatosis symptoms from the *NHS Choices cache:

*Early symptoms

Initial symptoms of haemochromatosis can include:

feeling very tired all the time (fatigue)

weight loss

weakness

joint pain

in men, an inability to get or maintain an erection (erectile dysfunction)

in women, irregular periods or absent periods

Later problems

As the condition progresses, it can also cause problems such as:

loss of sex drive (libido)

darkening of the skin – you may look permanently tanned

tummy (abdominal) pain and swelling

yellowing of the skin and eyes (jaundice)

feeling thirsty all the time and needing to pee frequently

severe pain and stiffness in your joints, particularly in the fingers

chest pain

shortness of breath

swelling of your hands and feet

an irregular heartbeat (arrhythmia)

in men, the testicles getting smaller

NHS Choices - Symptoms of haemochromatosis:

nhs.uk/Conditions/Haemochro...

I would definitely have a word with your GP about this just to have it ruled out of the equation my friend. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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Thank you so much Ken. This is very informative and helpful. This does sound like me very much!. I shall speak to the doctor about this (although I suspect there fed up with me by now). Once again many thanks. X

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Good luck my friend x

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Hi, it's about the same for me, 20 years fibromyalgia ( 11 years severe), I also get palpitations sometime sooo nad I think my life is at an end but always ends up being ok, all this don't sadly help you much other than someone else knowing how you are struggling

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Hi MrGrumpy,these palpitations started years ago as the odd flutter,then I would feel ok,but lately got progressively worse. Maybe worth getting ferritin test done? I am going to follow Kens advice and speak to the doctor .

By the way I'm grumpy with all this going on , ha. Best wishes x

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Oh yes I'm Grumpy too it's very frustrating

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Hi Dylan555 , Sorry to hear the issues your going thru.I gave most of them as well.The heart palpitations started on Sunday and really scared bu fit passed, straightened out a few issues at home but still have it.I am some what worried as this is new to m e.Another day or do and will make an appt I wish you the very best. Take care. Peck.🐤

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Thanks Peck. Let me know how your appointment goes. I agree it is worrying. Best wishes x

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I have same 3 conditions. Your Ferritin needs brought down for female 50-150 range & male somewhat higher? I had 400 levels & did phlebotomies regularly until in 100 range. Chest pressure better & fatigue& balance & pain but my heart flutters didn't really improve.

Docs don't understand elevated ferritin & damage it does over time. Get control of it!! Best Wishes

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Hi, thanks for reply. Am female so quite high level. Did you doctor recommend phlebotomies for ferritin?

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My hip pain was horrible 25 years ago & they locked up at age 24. Tested me for Hemochromotosis & began phlebotomies then. Docs ignored for years & now 25 years later suffering again. Find a doc that will bleed you...lots of health risks. Told me 300-600 range not damaging..not true on some of us!! It stores in your brain, organs, tissue & slowly damages them. Not a doc just learned the hard way! Be your own best advocate.

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Thanks ,am going to get checked x

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