Newbie needing help please!

[CharlieRN]

Hi

I'm not sure if I'm in the right place, but I was recommended this from another site.

I've been off work with horrendous fatigue, various body pains and brain fog for the past 4 months, following a chest infection back in April. My GP has done some a couple of blood tests and found a vitamin D deficiency (17.5 nmol/l) which they've treated me for - 8 weeks of 40,000 iu, and I've continued to supplement at 5,000 per day since, as well as K2-MK7.

However, the fatigue hasn't changed at all, although the brain fog has improved slightly, as have the body pains. I've been back to the GP and got a copy of my results, but they do not appear interested in helping me and now seem to be insistent on diagnosing Chronic Fatigue Syndrome. I've managed to get a copy of the bloods done back in May, and there definitely things that I think need addressing before CFS should be diagnosed -

B12 is only 216 (range 211- 91)

Ferritin is 22 (range 15-290)

Folate is 7.8 (range 3.5-14.4)

TSH is 4.0 (range 0.2-4)

The question I have, is what should I do next? I've started supplementing with 1,000 B12 & 200mg ferrous sulphate, as well as Vit D & K plus a B vitamin complex. I'm going to ask for further testing in a couple of weeks (the 3 month mark), but should I stop supplementing to get the most accurate results or keep supplementing to help me improve? Any support would be greatly appreciated!

[greygoose]

I definitely think you should hold off on the CFS 'diagnosis', because that will be a dead end.

Your TSH is much too high. The range may go up to 4, but a truly healthy person - no thyroid problems - has a TSH of around one. As soon as you hit 3, you're hypo. But, is this the first time your TSH has been tested? It could be a one off. In any case, your doctor will not take any notice until it goes much higher, but he won't take any notice at all if you get a 'diagnosis' of CFS.

Your B12 is very low, and I think you should take at least 5000 mcg sublingual methylcobalamin. Your folate is also lowish, so make sure your B complex contains methylfolate, to bring it up.

Taking 1000 mg vit C with your iron will increase absorption.

[CharlieRN in reply to greygoose]

Thank you grey goose. As far as I know this is the first time my TSH been tested. I'm going to ask for it to be redone at my next test along with T3 & T4, plus antibodies. Not sure whether they will or not given that 3 doctors have ignored my TSH (and everything else!) so far. If not, I'll get one from Blue Horizon.

I really don't think it is CFS, but it's hard to go against the authorities, so to speak.

[greygoose in reply to CharlieRN]

You can refuse a diagnosis if you don't agree. CFS isn't a disease, anyway, it's a syndrome. You cannot be 'diagnosed' with a syndrome. A syndrome is caused by something, but they're too damned lazy - or ignorant - to find the cause. Looking at your blood tests, I would say the cause was obvious!

[CharlieRN in reply to greygoose]

That is what I thought! But last time I went, I was told that it couldn't be my B12 or Ferritin because I'm not anaemic and they are used to make blood 🤔 And my TSH is only treated at 10. Unfortunately I hadn't read as much then as I have now and was too emotional to come back with a rational reply! So I walked out in floods of tears with what felt like a flea in my ear and no clear plan for what was next. Go home and get yourself better 😕

[greygoose in reply to CharlieRN]

I know. It's terrible, isn't it! They are so ignorant!

Low B12 and low ferritin can make you feel very ill, you don't need to have anemia - and it's very dangerous to have a low B12 like that, because it can cause irreparable neurological damage. But, doctors don't do nutrition in med school, so consider nutrients to be of no importance. I have been told that they are totally irrelevant! So, I've always supplemented on my own.

[Hidden]

More info on vitamin B12, you should be supplementing with a methylcobalamin type. I use Jarrow Formulas 1000mcg and it dissolves under the tongue

b12d.org/

Your TSH is at the top of the range, a normal TSH is around 1 but unfortunately many GPs will not treat until a TSH reaches 10. This clearly leaves many patients ill and unable to function. The NHS treats hypothyroidism as a numbers game.

Not sure that a B complex does much, others will know. What is your vitamin D?

[CharlieRN in reply to Hidden]

Thank you. The new B12 I've got is the Methylcobalamin 1,000 under the tongue 🙂 I definitely feel a bit better, but not sure whether it's the B12 or iron or both! Which is why I'm not sure whether to stop for the next test to get a more accurate test, or just to carry on as I am as a way of getting myself better quicker.

My GP did say they wouldn't treat until TSH was 10.

I've not had my vit D retested yet as they won't test until the 3 month mark, which isn't for a couple of weeks.

[greygoose in reply to CharlieRN]

For the iron, I think you have to stop for 24 hours. But, there's absolutely no point in getting retested for B12 once you've started supplementing, you will not get a true result.

Most doctors refuse to treat thyroid until TSH is 10. It's absolutely barbaric!

The B complex is necessary, because the Bs all work together, and need to be kept balanced.

[CharlieRN in reply to greygoose]

Thank you - I'll not take the iron then. I had been taking Berocca for a week before the test. Ok, so that's not a serious B12 supplement, but I still wonder now if that lifted my result at all. I didn't do a fasting test either, as nobody told me to! So I'd had my breakfast and a Berocca before I went to be tested.

[greygoose in reply to CharlieRN]

If you fast, and have your test early in the morning, your TSH will be higher. So, something to remember next time. Doctors don't know that!

[Marz in reply to CharlieRN]

CharlieRN - once you are supplementing B12 further testing is of little value as the results will be skewed.

Your GP is out of order.

[CharlieRN in reply to Marz]

Thank Marz - even if I've 2 weeks between stopping and being tested?

It's good to know I'm not going crazy or just being a hypercondriac!

[Marz in reply to CharlieRN]

It takes months - sorry. Just keep taking the tablets 😊

[CharlieRN in reply to Marz]

Ok thank you! 😊

[Marz in reply to CharlieRN]

If you are uncertain of my reply then I suggest you pop across to the PAS forum and ask your question there.

[CharlieRN in reply to Marz]

Thank you. I just thought that with the iron only being 24 hours then 2 weeks might have been enough 😊 I've only been taking the higher dose for about a week so I doubt it's made much difference at this stage anyway. I just want to make sure I get the right diagnosis, whateverthat might be! I'll keep taking them and see what difference it has made 😊

[Marz in reply to Hidden]

A B complex keeps all the B's in balance when supplementing B12. Also B12 works in the body with Folate - B9 - so a B Complex usually contains Folic Acid or Methylfolate.

VitD was on the floor at 17.5 nmol/L