Please tell me what's wrong with me - at the end of my tether

[FinallyDiagnoseMePlease]

Hi,

10+ yrs ago I had Glandular Fever. That seems to have triggered whatever is wrong with me as I've been ill ever since.

About 6 months after it was confirmed I had Glandular Fever I was diagnosed with CFS/ME, as I was not getting any better.

I'm not convinced that I 'just' have CFS/ME. My symptoms are listed below;

Severe tiredness
Headaches
Dizziness
Balance - feel like I'm falling backwards
Pain in hips
Hives and rashes on jaw/face/neck - no known trigger
Flu-like feeling
Memory issues - Long term fine, short term not very good
Weakness in hands/arms/legs/lower back
Burning feeling in skin - back of calves and side of hand/arm
Pins and needles - arms, legs and mid back next to spine
Always cold, even in very hot weather
Stiffness in body in morning
Difficulty picking things up, opening jars etc
Get words mixed up when speaking and forget what I'm saying halfway through a sentence
Painful stomach - on Omeprazole
Muscles feel tight and 'squeezed'
Hands and fingers always feel tight and swollen (don't look it) plus skin on my finger pads are normally wrinkly??!
Back pain - physio didn't help
Sometimes have difficulty swallowing
Sometimes eye blur - eye examine normal
'Flashes' in eyes when I turn my head to the side (not every time though)
Sometimes shake
Dry eyes
Palpitations

I've been to the doctors numerous times and they always just do a blood test which comes back normal every time. I've asked to be referred to someone but 'There's no one to refer you to'.

I have reached my limit now. My tiredness rules mine and my family's life.

I would happily live with all my other symptoms if I could just get rid of my exhaustion.

Please can anyone help? I'm even willing to go to the woo side if it helps!!

Dont know about fasting but that B12 level looks pretty low to me - did the printout have the range used by the lab? I have had B12 injections for a similar B12 level and it has helped with some issues. If you can't get GP to treat you then get B12 tablets (sublingual so held in the mouth not absorbed in stomach as that can be where issues lie e.g. Coeliac or lack of intrinsic factor)

My diagnosis CFS and a sleep disorder. The actual position: severe ferritin deficiency , severe vitamin D deficiency, low B12, low folate and an under active thyroid.

Your results not great without the reference ranges - they're really important.

However,, using the ranges where I live in the Midlands, your ferritin, B12 and folate are all way too low and need to be supplemented. No wonder you have pins and needles and fatigue! Being within the normal range is neither here nor there. You need to be at an optimal level.

Your TSH looks fine, but that's a pituitary hormone and from that result thee is no way of knowing what is actually happening with your thyroid hormones. They could be spot on, or they could be low in range and giving you severe symptoms. Also you can't tell whether your thyroid is under auto immune attack and frankly, with your B12 so low, your GP should be investigating pernicious anaemia and offering B12 injections.

I'll be back later with some links to reliable supplements, but I think we're making progress here already.

Ruby No, no range printed unfortunately but secretary said they're all in normal range.

Rockin I'm in West Sussex. From what I can gather, without the actual labs ranges, my levels are at the lower end of normal. Maybe they're too low for me?

I'm going to ask the Dr for b12, folate and ferritin supplements/injections and also ask for a celiac screening.

Thanks for all your help

OK, here goes (can't do links on the iPad)

Get yourself here and post your history and B12/folate/ferritin results - you'll get lots of good advice:

healthunlocked.com/pasoc

Read these, and possibly print them off the important bits for your GP, who clearly hasn't seen them! A bit technical, but you'll soon get the hang of it.

www.bcshguidelines.com/documents/BCSH_Cobalamin_and_Folate_Guidelines_%282%29.docx.pdf

cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!diagnosissub:3

cks.nice.org.uk/anaemia-b12-and-folate-deficiency#!scenariorecommendation:4

It occurs to me that the Omeprazole you are taking will affect absorption, so your deficiencies may simply be as a result of that.

To correct the deficiencies:

Ferritin - you can get ferrous fumarate tablets at the chemist (but not Boots) one a day for a couple of weeks to start, rising to two, then three, if you can tolerate them - take with orange juice or vitamin C to improve absorption.

B12 - one a day, tuck into the side of your mouth and let it melt:

www.amazon.co.uk/Jarrow-Methylcobalamin-1000mcg-Flavour-Lozenges/dp/B002FJW3ZY/ref=sr_1_2?ie=UTF8&qid=1418155467&sr=8-2&keywords=jarrow+methyl+b12

Folate - one a day

www.amazon.co.uk/Solgar-Folacin-Folic-Acid--100-Tablets/dp/B00H2H5JR8/ref=sr_1_fkmr0_2?ie=UTF8&qid=1418155514&sr=8-2-fkmr0&keywords=jarrow+folacin

Vitamin D - one a day

www.amazon.co.uk/VITAMIN-D3-2000IU-180-SGELS/dp/B00NMNOD0K/ref=pd_sim_sbs_d_4?ie=UTF8&refRID=11SS9GH7KF7R07ME0SN8

It's a matter for you whether you want to fight this out with your GP, but you can still do a lot to help yourself, if you're prepared to put the work in, read and learn. That forum I recommended contains your new best friends who will guide you through this maze.

See how you go.

Have you tried googling Epstein-Barr virus? It causes glandular fever and can have far-reaching complications. Sorry if it's been mentioned already

Rockin Thank you so much. I've done my first post over on healthunlocked.com.

I shall fight with the GP a bit longer and if I don't get anywhere I will start on those supplements.

I've checked my last blood tests, when I wasn't on Omeprazole and the levels were worse!! - Folate = 5.9 ug/l, B12 = 193 ng/l, ferritin = 15 ug/l

Space Thank you. When I was tested for GF I'm pretty sure they also tested for EBV and it didn't show? CMV showed up at the same time though, I think having a double whammy of viruses hit me hard.

RockinD - any idea if those B12 capsules are gluten free and not made in a factory with gluten products? I can't see any info online.
OP - I've suffered from many of the same symptoms to you for years, I did finally get diagnosed with coeliac disease a year ago through an absolute fluke when one doctor queried why I had been anaemic on and off for years. I honestly thought that was the answer to everything and I would be feeling fantastic. Over the past year I have felt worse than I have ever done, with the added bonus of stomach cramps and the associated joys (surprisingly none of which I had before when I was living with undiagnosed coeliac). I've cut out all processed food and lactose but no difference. I have been back to GP and he says all my blood tests are fine (still waiting for results of thyroid antibodies) and he now thinks I have CFS. Gastro doc helpfully suggested I also have IBS. Feeling very despondent and beginning to think that it is all in my head. I can normally keep positive but starting to struggle. So can sympathise with how you feel.
anyway, not to jump on your thread, just wanted to say this is all useful info. I have never asked for any printouts of my results but will do next time and I am going to start taking B12, etc. Good luck next time you see your GP.

Hopping on here as I have similar results and a cfs diagnosis. Doc not interested in pursuing anything else.
Have just got some b12 patches at 5000mcg which are one a week. Supposed to have better absorption rates. You can find them on amazon. Brand is Vie.

I have Luous and my bloods are always negaitive, this isn't unusal for Lupus. It can be diagnosed from symptons.
It definitely sounds like its auto immune, my thyroid tests have always been normal but I think its affected by Lupus.

www.jarrow.com/product/58/Methyl_B-12

Gluten free!

OP - a couple of helpful responses next door

Hey are you interested in pursuing your situation? If so, the usual rules apply. Get a copy of your test results, with the reference ranges, learn to interpret them yourself and act on what you find.

Never believe any health professional who tells you your results are 'normal' or 'fine'. Always ask for the figure and the reference range.

Almost everyone with a CFS/ME/FM 'diagnosis' has got something else going on that is causing those symptoms and most of it is fixable.

I want to follow this as a lot of your symptoms are the same as mine.My thyroid is now the best controlled it has ever been since it went wonky.I did a post this morning asking if any gp's here.

What do your thyroid results look like?

Do you have Hashimoto's Disease (auto immune hypothyroidism)?

There are thousands of people out there who would say that if you have these sorts of problems, a GP is the last thing you need!

Yep - I've got my last lots of results although these were taken a year ago.
B12 is 225 (180-800)
folate is also low.
Am unsure about thyroid results but middle of range.
Brain fog is bad atm so struggle with reading lots on the Web. But have just started b12 patches this week. Am also getting a over 70 multi vit from health span which seems to have higher levels of cuts. Am also going to add magnesium.

That sounds like a good start.

Depends what thyroid results you have, but if were talking FT4 and FT3 then mid-range may not be enough and if were talking TSH, mid-range may be a tad too much

Its always a bit of a balancing act.

Found my results
Serum b12 229 [180~800]
Serum folate 8 [3~20]
Serum ferritin 109 [25 ~300]
Serum free t4 16.8 [12~24]
Serum tsh 1.92 [0.4 - 4]

looks like I should also be upping ferritin too?
I'm using 5000mcg b12 patches weekly.

Serum free t4 16.8 [12-24]
Serum tsh 1.92 [0.4 - 4]

Hmmm, TSH maybe a tad high and FT4 less than mid-range. The interesting one would be the FT3 if you could get it done. That would tell you how much active thyroid hormone you have. If that was also lower than the top quarter of the range, which would seem logical, then you would probably still be getting symptoms regardless of the OKish TSH. The important thing for how you feel is what is going on with your thyroid, not the relationship between your thyroid and your pituitary, but a lot of GPs haven’t figured this yet.

Otherwise, your B12 is low (needs to be at least 500), folate needs to be near the top of the range and ferritin is pretty much OK.

Does that help?

That's brilliant - thanks - will have a rootle about and see if I've had ft3 done. Don't think I have though.

Do you think it's better to take separate folate, magnesium, vit c or would this multi vit be ok?

m.healthspan.co.uk/multivitamins/multivitality-70-plus

I don’t really have a view on the multi vit against individual vits and mins argument. I think in the end it’s what works for you and does it have enough of what you need.

I take things individually though because I’d taken a bog standard Boots multi vit and min every day for 20 + years and still ended up with the problems I had.

At the end of the day, with all this, it’s what works for you.

RockinD - thanks for link confirming gluten free. Must of been having a dumb moment when I couldn't find it!
How soon after starting vitb12 did you feel like it was having an effect?
My GP did say before that I had low folate, it was just barely within the normal range, so will stock up on that too. I was told a couple of months ago that my ferritin was now 35 which is apparently great(!), it had been around 5 for years until I was finally diagnosed coeliac. I will definitely be asking for printouts of my results from now on.

Looking at some of the ferritin figures I have seen on forums (for a?), I guess 35 is pretty good, but the received wisdom is that it needs to be mid-range and at least 70 to have the necessary oomph to support various biochemical processes within the body.

I started off supplementing B12 and vitamin D, the vitamin D being much more of a problem, so I cant say which supplement contributes what to the way I feel now.

Sorry I've been AWOL, my hands/arms are very painful at the moment (burning) so I've been unable to type.

therzinosaurus Don't worry about jumping on the thread, the more the merrier! I too have cut out processed foods, well 90% of the time we eat 'clean', but it hasn't made any difference to my fatigue. Hope your thyroid results come soon.

Hey Sorry your Dr isn't interested in pursuing anything else. Those patches sound great but I have really sensitive skin so have ordered a b12 spray instead.

Rockin I didn't realise that you need folate to absorb B12 (hope I've got that right!). I've decided to start supplementing now because I may not get to see a Dr this side of Xmas - bit hit and miss at our surgery, some days you can get a same day appoinment and other times you have to wait 2+ weeks. I've bought some B12, folate and D3.

At my next GP appointment I will ask for a coeliac plus a T3 and T4.

Thanks again for all your help.

We can rebuild you!

Let us know how you're doing.

I can't see calcium results in your list OP, do you have those?

Hi all.

How is everyone getting on?

Since my referral to the CFS/ME clinic they have contacted my GP for more bloods.

I had those yesterday and everything can back normal again which I know is a good thing but so frustrating that there's no clues to what is going on.

My B12 came back today as 283 (150 is lowest normal) so that's gone up from last time.

BestIsWest My calcium came back today as 2.27 (2.1-2.70).

My coeliac test will take a little while longer. They're also testing my urine (not sure what for) and that should be back next week.

Hope you're all getting on well.

Hi op your burning arms, is it like having sunburn? If so its probably neuropathic pain , I take gabapebtin for this. It gets much worse with a lupus flate. Also pins and needles , numbness and a 'creepy' feeling. I also get nerve pain which is like a shingles attack.