New pains doc doesn’t think the PA causes and just says it must fibromyalgia I just don’t know
Pain in hands in morning hurt to clench them, pain under soles of feet when get up struggle to walk, painful knees, pain on right in lower back/hip area any ideas please just tried two co codamol today
Tracey
Have you been tested for Hashimotos - auto-immune thyroid ? This can be the cause of aches and pains too. Fibro can be linked to to Low T3 - the most important thyroid hormone which is very rarely tested within the NHS.
Have not checked your other posts - have you had Folate - Ferritin - VitD tested ?
I don’t know I have underactive thyroid too and on thyroxine
Aah ! Like PA Hashimotos is also auto-immune and it is not uncommon for people to suffer with both. Sadly the correct tests are rarely done in the NHS. How much Levo/T4 are you taking ? When were you diagnosed ?
You are legally entitled to have copies of your test results with ranges so you can monitor your own health progress and check what has been missed.
Ideally your TSH is good at 1 or under - FT4 & FT3 in upper part of the range.
VitD ? Has it been tested - along with Ferritin ?
I have Hashimotos and a B12 issue caused by extensive gut surgery ....
I don’t know about vit d
I have 100 a day levo been on those for years before the PA
OK so how do you take your Levo ? On an empty stomach and wait for an hour before eating or drinking- except water ?
The Levo/T4 you are taking is inactive doing very little in the body. It needs to convert into the Active hormone T3 and this is needed in every cell of your body - brain had first call . It will only convert well if your levels of B12 - Folate - Ferritin - VitD are optimal.
Do you ask for copies of your results ?
Have you taken a look at the Thyroid UK Forum here on HU ? There's almost 108,000 members - so very busy with lots of helpful information.
Do you know the full set of thyroid blood tests that should be done please
TSH - FT4 - FT3 and the Anti-bodies TPO & Tg. The NHS very rarely test FT3 or antibodies- sigh.
You can find the companies that send out Home Testing Kits in the above link. Medichecks have Special Offers on Thursdays. Results by e-mail. No point in asking for their Review on results - best to post on Thyroid UK Forum for comments or tag me here. Ultravit is the most popular testing bundle as it also contains Folatd - Ferritin - B12 and VitD
I get all of those pains. Then they go? I've got b12 deficiency and I think it is related as nothing else can be found wrong with me
O e of my daughters had a fibromyalgia diagnosis for years They missed low folate ferritin of 10 and b12 deficiency and and the sort
of anaemia you with PA.
Do the pains go after an Injrction of b12?
Noo
So never any relief?
My daughter had years of severe pain diagnosed as fibromyalgia.
She then had the worst pain in her spine. Yhe pain then shifted to proper exhaustion from compression of nerves t3 if I remember right.
Shed been discharged from the rheumatology dept.
A pain management course was useful.
Shes ended yi with POTs
HEDS
PA /b12 deficiency
Subclinical Hypothyroidism.
She has wrist supports and eating aids which help pain
A total change of diet had reduced pain
Keep going with all the tests
I hope more reasons found.
Have you had MRI scans?
One of Thyroiduk's Advisers (now deceased through an accident) stated that the 'new diseases aka Fibromyalgia and Chronic Fatigue Symptoms' were due to low T3. I'd ask doctor to test your T3 and Free T3. If he doesn't I'd get my own blood test.
This link is about a doctor who was thought to have an unknown serious condition. It was by chance that one of his colleagues found the reason:-
youtube.com/watch?v=BvEizyp...
Thank you
Cant watch the links head wont do it! But will certainly send it to my daughter
So if t3 is low is it treatable?
Low T3 can be treated - yes ! Increasing T4/Levo dose can improve the FT4 level which if all the ducks are in a row SHOULD convert into the Active FT3. Needs to be near the top of the range to nourish all your cells ...
For good conversion of T4 into T3 - B12 - Folate - Ferritin - VitD - all need to be optimal and not bumping along the bottom of the range.
Many members eventually self medicate by adding T3 to the T4. Some of us are T3 only - myself included.
You could have a read of some of the posts on TUK and you will soon see what a minefield it can be ... happy to help.
I'm the same since they stopped my B12
Hands ...wrists ...hip pain .foot cramps
Started injections back up but could take ages to go back to normal
Given that they don't actually known what causes fibromyalgia - ie it is a label for a collection of symptoms - it isn't a particularly helpful diagnosis.
Sorry that your GP isn't aware that the symptoms you are describing could be related to a number of conditions. Have had similar experiences myself.
Fibromyalgia is a disease, not a label, I was wrongly diagnosed with polymyalgia 8 years ago and put on steroids and now have cushing's on top of all B12 deficiency symptoms. According to 2 neurologist at the national London fibro is a symptom/ link to B12 d
jacwright I am afraid I do not include a group of symptoms that could have a range of causes in my definition of disease - for me that is a label of a group of symptoms - as is depression and whilst it may be helpful on some occasions it usually ends up being used as a reason for not looking any further to identify the underlying causes with the result that the symptoms get treated not the causes.
B12 injections pains and numbness.
Could my nerve pains be B12 related
Elevated B12 but no evident reason
Help needed for my friend
B12 Deficiency is the worst experience of my life!
