Newbie needing help please!: Hi I'm not sure if I... - Thyroid UK

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Newbie needing help please!

CharlieRN profile image
17 Replies

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!

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CharlieRN
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17 Replies
greygoose profile image
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 profile image
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 profile image
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 profile image
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 profile image
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.

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 profile image
CharlieRN in reply to

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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
Marz in reply to CharlieRN

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

CharlieRN profile image
CharlieRN in reply to Marz

Ok thank you! 😊

Marz profile image
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 profile image
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 profile image
Marz in reply to

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 :-(

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