Test results

[Sutton210]

I now have my results from August 21st

TSH 2.22 (0.3-3.94) - -Ferritin 79 ug/l (13.0-150.0)

Vit B12. 454 ng/l (191.0-663.0)---Folate. 4.9 ug/l (4.6-18.7)

I did see Endo (privately) in early August - so I don't have Anti-TPO etc results yet - my dr said she will let me know when copies are available. All other tests were ok except

Serum alkaline phosphatase level was slightly high - 106 iu/L. (35-104.0)

She thought my symptoms were fibromyalgia related - ie. pain & fatigue still (I always get this prognosis) - but wants to check for diabetes (fasting blood test) with regard to my feet hands leg burning symptoms - I was due to have a hip operation on Monday (22nd) but this has now been postponed due to Beds needed by A & E.

Many thanks hope this gives you more idea what is going on.

[gabkad]

Fasting blood glucose is not good enough. You need at least a 3 hour glucose tolerance test and you need your HgbA1c level checked.

Burning symptoms can also be due to nerve impingement. The smallest nerves are the ones that transmit the sensation of burning. If that is your only symptom, then the nerve impingement (may be in the neck and may be in the hip as well) is mild. But yes, you could have high blood sugars that are damaging the nerves.

You need to get your folate up as well. A good B complex vitamin capsule will give you plenty.

[greygoose]

Hi Sutton,

Are you on thyroid hormone replacement? If so, that TSH is rather high, you ought to get your FT4 and FT3 tested if you can.

Low thyroid hormones can also have an effect on nerve endings - it can have an effect on everything, come to that, including pain and fatigue - and causes numbness and burning sensations.

Fibromyalgia is the go-to diagnosis that doctors use when they either have no idea what's wrong with you despite your tests; don't do the right tests; or can't be a***d to do any tests at all.

Fibromyalgia is not a disease, it is a syndrome. A syndrome is a bunch of symptoms which, in the case of fibro, bear a striking resemblance to the symptoms of low thyroid. And many, many people find that once they are on the correct (for them) thyroid hormone medication at the correct (for them) dose, all these symptoms disappear.

So don't be fobbed off with a 'diagnosis' of fibro - you can't diagnose someone with a 'syndrome', it's like dianosing someone with a sneeze and a sore-throat!!! - because there is no valid way of testing for it, and no way of treating it.

Stick out for you thyroid because that can be treated and, usually, treated well!

Hugs and good luck, Grey

[Sutton210 in reply to greygoose]

Hello Greygoose - thank your for your reply -

I have been on levothyroxine for about 7 yrs - currently 125mcg- which the endocrinologist (private) advised. I've been seeing him over the last yr - but have now been referred back to NHS - as he said all my tests were ok. (I have requested copies of the last blood tests that he did as I believe he was checking for antibodies as well). I was tried on T3 T4 combination but couldn't tolerate due to fast heart rate etc., & he said because of that natural thryoid would be the same?!

The results I posted here were taken at the surgery - Dr has now said to increase to 150mcg daily. (So I'll see how this goes!) I still have extreme fatigue/weight gain which I cannot shift.

What doesn't help at the moment is that last yr I started to have nocturnal seizures & also diagnosed with sleep apnea (for which I wear an air pressure machine at night & I'm due to have a hip replacement (next week) - so this could add to the exhaustion & also because I cannot walk much now - let alone exercise!

I have never been happy with fibromyalgia diagnosis alone- but saw a rheumatologist a few hrs ago who confirmed it! Perhaps even then it was my thyroid! My mum had underactive too - (I'm not sure how long for though).

Too top it all I am not tolerating the anti epileptic medication either - on my 3rd one already - waiting to change after my op. (This can make me woozy/tired & feeling sick)

Thanks once again.

[greygoose in reply to Sutton210]

Oh dear, you have been through the mill!

Your hip operation will make you go more hypo, this is only natural, happens to everyone. But it should only be temporary and things should go back to what is normal for you in time.

Fibro is a godsend for rheumatologists! They can just blame everything on that and don't have to bother anymore! Don't believe them!

Sleep apnea is a symptom of hypos, so your 150 dose is likely to still not be enough. You need high levels of T3 to lose weight - sometimes even over the top of the range.

How much T3 did your doc add in when he tried you on T4/T3 combo? And did he lower your T4? Some people have to add it in very slowly, starting on a very low dose. If you have been doing without it for a long time (which it looks like you have!) starting on too much might make things difficult for your heart. However, that does not mean that NDT wouldn't be suitable for you just because it has T3 in it. The thing is, it's natural T3, not synthetic. And people often act badly to synthetic but well to natural.

Be interesting to see the tests done by your private endo and exactly what he calls 'ok'!

Hugs, Grey