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CFS - help please! What next?

(10 Posts)
Davinaaddict Sun 24-Jul-16 14:03:21

First of all apologies as I know there have been a lot of posts on this already and I've tried to take as much as I can from those, but as I don't seem to be getting any help or real interest from the doctors, I wondered if the wisdom of MN could help me.

It's a long story and I don't want to drip feed. I started with a chest infection back in April, which cleared within 3-4 days of antibiotics. Not a particularly bad case - I only had it about 1.5 weeks in total. I was then left with awful fatigue, body pains, brain fog etc. The doctor said it was just post infection malaise and to give it a week (then another, then another etc).

About a month later, a blood test showed a vitamin D deficiency of 17nmol/l, and I was given 8 weeks of 40,000iu per week. I finished this last week and am continuing to supplement with 5,000iu a day (as I'm aiming to get a level over 100 after lots of research on it). Some symptoms have eased off, but the fatigue feels like it's getting worse and I'm still having other symptoms although they appear to have eased off thanks to the vit d. The doctors have now said that it sounds like chronic fatigue syndrome and seem to be unwilling to look at anything else. I've asked if there are further tests or other things we could look at and was told it would be a referral to the CFS clinic if I wanted a definitive diagnosis. But haven't said that they will refer me yet.

I've been referred to my works service for a second opinion and they've said they can't offer a second opinion because I've not been referred to a specialist, and there isn't enough medical evidence to have been given a proper first opinion (which I agree with). There has only been 2 blood tests and they were 2 months ago.

I've finally managed to get a copy of my results and I've identified that there are certainly things we can work on (thanks to the threads on here!), yet the doctors are unwilling to even look at them. So back in mid May the ones I've seen are:
B12 - 216 (range 211-911)
Ferritin - 22 (range 15-290)
TSH - 4 (range 0.2-4)

I've been supplementing with Berocca since before the blood test (thinking it can't do me any harm), and last week in desperation I started on a double dose of Spatone.

I'm getting so down about it all as I have no life. The fatigue is to the point where I cannot do anything for myself other than get up, dressed etc and make a very basic meal (cereal, sandwich, ready meal). I spend 90% of time on the sofa, and get exhausted if I try do any more. I can't work - I'm normal full time in a managerial role. I have no social life, as I can't drive distances, and can't walk much. I leave the house about once a week, I'm missing out on spending time with the kids properly, and causing lots of extra stress for my DH, who is now a full time cook and cleaner as well as working full time and doing everything for and with the kids. He's great and doesn't complain but he really needs a break, as I can tell it's getting to him.

I have no idea what to do next or to help myself as the doctors just don't seem interested now that they have pigeonholed me into this diagnosis, despite it only being 3 months. If it is CFS then that's fine and I'll have to learn to accept it, but given the results above, I'd at least like to try to rule those out before we settle on that.
And that was much much longer than I thought, so thank you for reading if you've got this far! 🙂

Pleasemrstweedie Sun 24-Jul-16 22:41:24

I think it is highly unlikely that you have CFS given that your TSH is almost out of range, your B12 is too low and do is your ferritin.

If your GP is happy that everything is in range and you don't need any support, get yourself another GP. Before you do that you might go back and ask what he is going to do about your low levels of B12 and ferritin. If he still won't help, you can supplement these yourself.

Your TSH is almost out of range. So you might ask your GP to check TPO and Tg antibodies. If you have positive antibodies he should treat you at that level according to the guidelines. Otherwise he will wait until your TSH reaches 10.

It looks like you are fixable, but you'll probably have to do most of it yourself.

The ThyroidUK forum at will help as well. Lots of advice there.

We can rebuild you.

buttertoffee Mon 25-Jul-16 06:41:55

I had extreme fatigue, was barely able to function. my ferritin was 22.

22 is way to low. I took Ferrous Sulphate (iron tablets) 3 x daily for 4 months and it went up to 70 iirc. felt fine again.

not sure about the other results but I find it concerning that your GP didn't pick up on these given your symptoms.

you can get Ferrous Sulphate over the counter in any pharmacy

buttertoffee Mon 25-Jul-16 06:43:17

spatone doesn't contain much iron. you need something proper.

Davinaaddict Mon 25-Jul-16 10:31:37

Thank you so much for your replies! The doctor I saw on Friday was actually the third doctor I've seen/spoken to since my blood tests were done, but the only one I've specifically asked about the results, as I only got the print out recently, and neither of the other mentioned the other results hmm

I thought the Spatone would have been a bit too low for me when I saw the results. It was just something I stuck on my online shopping list as a last minute desperate attempt! I was thinking of swapping to Floradix, maybe with the added B & C vitamins? Do you think that would be enough for both, or would you recommend something else?

I am concerned about the TSH, as I know that I can't do anything about that without the NHS (unless I go private which I can't afford to do). Although I might be able to stretch to get a full test done to take back to the NHS. I'll get onto the website, thank you!

buttertoffee Mon 25-Jul-16 10:55:44

I would really go for Ferrous Sulphate for iron. don't think floradix has enough either.

I always take it with orange juice.

I also take b12 supplements. was never tested as laboratory refused (on cost grounds, same for me with vitamin D - also refused to test).

you can get b12 nuggets from Amazon etc.

check for 'sublingual Methylcobalamin'.

Davinaaddict Mon 25-Jul-16 11:17:00

Fab, thank you!

CFSKate Wed 27-Jul-16 11:56:00 lots about thyroid etc

Davinaaddict Wed 27-Jul-16 12:03:13

Well I've got the report back from works doctors and it's a huge disappointment. All it talks about is CFS, with no mention of any other possibilities or my blood tests. So back to the drawing board.

I've ordered some B12 (1,000 units - I don't have the backwards u on my pad), and they've arrived today. Can I take these as well as the Berocca (just because I still have a lot) or should I get a different B complex?

I've also ordered 200mg of ferrous sulphate which I'm hoping will arrive tomorrow.

Way tmi, but I've also come on my period this week and my symptoms are so much worse ☹️

My next plan is to go see yet another doctor specifically for a second opinion when they will retest my bloods at the 3 month mark, which isn't for another 3 weeks. I'm going to ask them to redo the ones I've already had and to add on the Ft3, Ft4 and the antibodies tests. I might also ask them to test for coeliacs as well, if nothing else but to rule that out. Does that sound sensible? Or is there anything else I should be doing?

Davinaaddict Wed 27-Jul-16 12:04:07

Thank you Kate! Cross post, but I'll check that out now 🙂

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