My daughter has been diagnosed as suffering from Fibromyalgia and has suffered from this for several years. After not having much luck with her Doctors, she asked me to attend an appointment with her (she gets so upset when there - she is given pain killers, nerve blockers, anti-depressants etc. but nothing helps much). I went with her and mentioned B12 and PA as I suffer from this and said I wanted her tested - lo and behold, she was just on the lower limit and I requested that she have the loading injections and then 3 monthly top-up which has now been done. When she was given an appointment at the pain clinic she dragged me along and I mentioned there about Vit D deficiency. They said she should be tested so she wrote to her doctor and he agreed. She was tested last week and got the result today Vit D 29 (50 - 150). However, the form reads "Below low range - no further action required". Is it me or does this seem totally absurd - why would you have parameters if you are then going to ignore them?? However, my real question is this - as she has deficiency in both B12 and Vit D, does it seem likely that, at the very least she has absorption problems and is it possibly a pre-cursor to Hashi's??
Link between Fibromialgia / Hashi's and Thyroid? - Thyroid UK
Link between Fibromialgia / Hashi's and Thyroid?
She certainly needs to supplement Vit D and B12, doesn't she? Has she had her iron level measured too?
She also needs a full thyroid panel, including anti-bodies and FT3. Fibromyalgia is (in my opinion) a fancy name for a debilitating symptom whose cause needs proper diagnosis so that the symptom can be relieved or removed.
Your poor daughter, no wonder she gets upset. Saying 'no further action needed' when her VitD level is that low is ridiculous. I have Hashimoto's and fibromyalgia. The fibromyalgia was diagnosed by a rheumatologist a couple of years before the Hashimoto's was diagnosed. I then questioned whether I really have fibromyalgia as the symptoms are the same as for Hashimoto's but because my TSH and T4 levels are within the 'normal range' my GP and Endo insist that my symptoms are due to fibromyalgia. Needless to say, I'm not convinced! I'm also deficient in Vits D and B12 and in calcium and iron. So I totally agree with rosetrees that she needs a full thyroid panel including antibodies and tests for iron and calcium. Good luck xxx
I'd put money on her being low in folate, iron and magnesium as well. Probably zinc too. You could ask them to test for the PA (PCAbs/IFAbs) and thyroid antibodies, Coeliac also, see if there is autoimmunity going on. It would be best if she had some kind of PA diagnosis on file otherwise she could find her injections being taken away at a later date. And 3 monthly injections are rarely enough to reverse out of symptoms.
Yep will do, I did tell her to ask for a blood test just before her first 3 month jab (3 months after the loading dose so I wanted to see if it had made much difference) but her doctor refused. I need to buy her some B12 and find out the highest Vit D dose allowed without prescription. Roll on Monday!!
B12 patches from amazon are good and bypass the gut/malabsorption....I take 10.000 IU's of D - but then I also have Crohns. Good Luck on Monday....think you will have a long list. Hampster1 has brilliant knowledge on B12 and PAS - better than any doctor - oops ! - sorry Docs that are peeping. Perhaps she IS a Doc
Definitely NOT! And having one of those days where I feel like crap and don't really believe I know anything at all - why does it have to be so complicated?
I wouldn't worry about Marz thinking you were a Doctor - for some reason I thought you were a bloke!! Hugs for a crap day x
Thx, no not a man, I'm sure my doctor would take me far more seriously if I was! Just another hysterical middle-aged housewife
...going for my annual blood tests in the morning - so need you back on form for when I get my results back - and remember this is Crete - I will have them in a couple of days Tomorrow is another day.....and hope you feel better....
web.archive.org/web/2010112... Maybe this is a link that will help with the fibromyalgia diagnosis
Your daughter needs to be on a good dose of VitD - according to her result - possibly around 4/5000 IU's daily.
grassrootshealth.net has a scale showing you the amount you need to take according to your results. Think it is around 1000 IU's for every 10 points below 70/80 It is often advised on here to have Calcium tested to check where it is in range as VitD can stimulate production and too much is not too good.
I would suggest she has her anti-bodies tested for the thyroid as well as for Intrinsic Factor....in my non-medical opinion I observe Hashimotos is more common in Fibro and yes the gut could well be involved. Going Gluten Free may well help to heal the gut. I had Fibro before being diagnosed with Hashimotos.
Hashimotos is also linked to depression and being Hypo generally. Low T3 causes things to go wrong in the body - and the brain demands the most T3 or ACTIVE hormone from our blood for the brain....next the gut.
I think many people suffer with absorption issues as B12 deficiency is described as being at epidemic proportions. Could be to do with an acidic modern diet - or the parietal cells in the stomach lining being slow due to the Hypothyroidism...
There are official websites for Vit D from the UK too - check out spareribs profile - scroll down and click onto some of her links she has posted....there was an informative post recently. You could also put VitD into the search box at the top of this page....and look out for spareribs
Do hope that soon you will be able to link your daughters conditions to an underlying cause which could be the thyroid....
I know what you mean. Mine was exactly the same for folate...in great big letters was below range, deficient and at the top "no further action" What?!?! And I have seen this happen to others too. Makes no sense whatsoever. You keep on pushing to get things sorted and prescribed to help her feel better. I do wonder what her ferritin levels are at...let us know when you find out. Big hug to you and your daughter. Hope you get to the bottom of it all.
x
Some of links to mull over:-
web.archive.org/web/2010103...
web.archive.org/web/2010081...
web.archive.org/web/2010103...
web.archive.org/web/2010111...
Unfortunately, Dr Lowe died in Jan 2012 and is missed by many people. He wasn't afraid to speak out, particularly to our RCoP and BTA but they didn't listen and don't want to know. There are other topics at the top of the page. He was also an Adviser to Thyroiduk.org.
"Below low range - no further action required" - is what the lab says - but what does the Dox say?
insert strange incomprehensible repetitive noise [here] ...
yep absurd... - suppose then they 'ain't gonna score no drugs' as vital minerals are just not lucrative......
Please get tested BEFORE supplementing with B12 (GP wouldn't do mine so I got an active B12 from Blue horizon £57 with TUK discount - it's one of many private labs, I don't get commission or free tests or chocolates or anything - yet lol!) So... I took it to GP then I got tested! (a surprise as I had been supplementing a bit, so of course I was within range!) Felt better, so worth it. You daughter is fortunate to have you to help x
Best wishes Jane