slowmomax10 years ago

I have all of these. I pushed for treatment for what looked like subclinical hypothyroidism in 2006 (I reckon I've had a low thyroid function since puberty) then pushed for a diagnosis of fibromyalgia in 2007 as the levothyroxine didn't improve my symptoms, though I lost about 10lbs. I'm now on 150mcg (having tried adding T3 and trying Natural Thyroid with no benefit). I've been tested twice for antibodies and was negative so it looks like mine isn't an autoimmune situation. If it was a conversion problem (T4 to T3) I should have felt better on the added T3 and NT so I'm not sure what I can do about it - unless getting help for my adrenals would help (had an abnormal cortisol test years ago) but I've tried an adrenal supplement and nothing changed...

I think the NHS is crap at dealing with complex hormone problems so I would have to go private and even then it's hard to find a good doctor who will really help.

Unfortunately for a lot of us the 'treating fibro/cfs with thyroid meds' route isn't as rosy as it is for some...

booksearcher10 years ago

me too i have all of these as well it is a real life changer thats for sure

sylvi10 years ago

I have ra/fibro and if i ring up and ask about the pain i will always be told its the fibro thats causing it without ever been examined. I get told to just keep taking the drugs. sylvi.xx

jaov10 years ago

Dowmloaded a book to my kindle via amazon and it talks about the connection between fibromyalgia and hypothyroidism i have both one thing my dr told me was that irritable bowel syndrome also has a connection.... one thing we tend to forget is since fibro effects the muscles does this include the heart ect?

deelightful in reply to jaov10 years ago

When you have read your new book, love to hear about it.

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susie5910 years ago

i also have all of these, it ended up as i had hypothyroidism also, but being treated for that hasnt stopped the other illnesses/symptoms,

bex2013 in reply to susie5910 years ago

it is important to keep checking, I had fybro for 6 years before my thyroid check came back high i was checked every six months,

x

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bex201310 years ago

I have had fybro for 8 year diagnosed and who knows how long before, I have always had a healthy heart, I have suffered with high blood pressure at times through pain and the stress but i dont think it was related directly to fybro and I have researched it lots. I have never heard of anyone dying from fybromyalgia. Please do not concern your self with these consuming thoughts. I know sometimes depression can take over and I myself have often felt like i wish it would be terminal and just take me, because I could not handle the ever changing symptoms and my ever changing physical disabilities, But I have now reached a place that I except my situation mostly and try to get on with it. Please dont give up and concentrate on what we can still do and the positive influence we have on others through our endurance. You are not alone !!! god bless xx

migrembe10 years ago

i don't have a thyroid problem they must test it every year.

bex201310 years ago

PS i also have fybro, hypothyroidism cfs, ibs and gord,(gastric reflux). I am now a wheelchair user and spend most of my days sleeping or in bed. I really do understand how you feel and hope and pray for some recovery and improvement for us all. I have experienced good and bad periods over the last ten years but never this bad. CBT helped and pacing helped, but was recently diagnosed with cervical problems too so think that may have increased my stress levels ??? who knows??? I feel positive that I will improve and try to do more gradually each day. Have hope my friends its FREE!! xxx

Teddysmum4310 years ago

I have fibro,under active thyroid and ibs there is defo a connection. I've seen a private doctor for my thyroid illness but wasn't very impressed,I've seen a nutritionist but wasn't able to carry out what she wanted me to do,I had terrible side effects. I've lost weight,i go to the gym,I go out with my dogs everyday,everything they say to do and it has made hardly any difference. I feel pretty stumped at the moment.

alysonlane10 years ago

hi

i have thyroid problems but not the norm i they dont even test for free T4. my T4 is very low so i take 50mg of thyroxine but i know i function better on 100mg but doctors r god. i also suffer from chronic constipation but know i have a P.E.C which help me go, i insert a catheter into a hole from stomach to cecum into cathather put a fleet ennema.also suffer from reflux and have a hiatus hernia, i was diagnosed in 1989 with C.R.P.S. as a result of bilateral knee surgery i cant do anything without pain, im in contant pain, i realise im waffeling a bit but im very depressed at mo and just feel like ending it all, i wont as im a coward but thats how i feel. now im waiting to see a rhemodologist to confirm diagnosis of fibro as well. gentle hugs to all

deelightful in reply to alysonlane10 years ago

My dear friend, please don't say you are a coward. No, No You are brave, we all feel bad at some point, more often than not. But as Bex 2013 say "Hope is free".

I don't know what it is like to be in your place but I feel for you, we all feel for you. I hope the Doctors will help you sooner and lift a lot of the pain.

Your friend

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Hidden in reply to alysonlane10 years ago

Alyson so sorry to hear that you're feeling very depressed at the moment. If you feel you would like to discuss your situation, to off load what is troubling you to someone impartial, please know that the Samaritans are always available to speak to anyone like this. They are not judgemental and are trained to listen to people when they are feeling down and troubled.

Their contact info is -

Samaritans

08457 90 90 90

jo@samaritans.org

samaritans.org

I hope your Rheumatology appointment comes through soon for you. Please know that we are here for you, to listen and to help and to support you where we can.

Take care Alyson. (((hug))) xxx

Libs

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Hidden10 years ago

I have cfs, fibro and IBS. My thyroid function can be borderline. Please people, be careful messing with thyroid meds. I got in an awful mess doing it.....panic attacks and a restlessness beyond a joke.....really exhausting. Put me in a major crash.

What I'm learning is the mal absorption and leaky gut puts toxins in the system and prevents organs, glands, body systems from working properly.

The thyroid thing is intermittent and borderline because of it. Putting extra thyroxine into the system or taking drugs so the thyroid gland will produce more can actually result in over dosing and a yo yoing effect.

Another system involved in this is the adrenals. Adrenal fatigue and a yo yo-ing of adrenalin. The whole system gets in a real pickle.

By looking for toxic triggers and allowing the gut to calm down and work properly then allows the other glands and systems to correct themselves.

Stress is a major trigger, emotional stress, but also the stress we put our bodies under playing with various meds to try and correct what we don't understand.

The only meds I take now are co enzyme q 10 (doctors best 200mg) magnesium and calcium from boots, some cod liver oil and a multi vit and min.

I have acupuncture and bio resonance once a month and use far infra red to detox.

I've been on a diet for 2 years cutting out dairy, caffiene, msg, aspartame, and cutting right down on wheat, yeasts and moulds, meat (i have fish instead) and nightshades (potato, tomato, peppers). I don't have fried foods, olive oil isn't too bad but most of the other cooking oils are toxic.

I haven't had a bug or an IBS attack in a year now. I have crashed when stress gets too high. I haven't worked out how to stop that !

I still pace, but manage to look after my daughters toddler 3 days a week, which I would not have been able to do last year.

There's no cure for this condition, but I know now that it all centres on looking after the gut. 80% of serotonin is stored in the gut ! We don't need all the anti depressants. Our bodies CAN function if we take out the toxins. The pain doesn't go completely but I only take the occasional paracetamol now. As the system re balances, the pain settles down. I can now feel a toxic event and recognise it. Drinking lots of water helps.

Of course a bag of greasy fish and chips with a coke on the beach will now have nasty effects lol

But if I keep to the diet it all seems to settle down.

Thyroid and all x

Just my experience of course....I know very well what desperation will make us try.

Please consider what extra toxins you're considering adding to the mix x

Sleep is the last thing to settle down and the first thing to be affected. For me anyway x

Stepper

jaov10 years ago

Have been told doing tai chi helps with stress levels and fibro still have to find a class near me..... but then again i tjink tsking time out to relax is a big help when and if you can find the time

deelightful10 years ago

Thanks for your comments, anyone any comments on the link I suggested.

I would like to add, I do not suggest anyone taking medication without consulting there Doctor. All thyroid medication should be prescribed by your own GP. Do not mess with your medication without consulting them first.

your friend

Hidden10 years ago

Qi gong is a form of tai chi. I find it really helpful. There's a DVD called the smile programme for ME, which is a qi gong programme designed specially. I've only just got a copy so haven't looked properly at it yet.

Just to clarify, I was under the gp when I was taking thyroid meds....I still got very sick. I'm not saying don't look at it.....just be careful. We have an illness they don't understand