Always ill and fed up! Online blood testing anyone used?

[Florencelatsy]

I turned 40 this year, and have for the last 15 years had worsening health and chronic fatigue. If I'm ill, I'm really ill, over the last few years I've been hospitalised with pneumonia, acute pharyngitis, double vision and cellulitis. If I get flu/covid it takes me weeks to recover fully and I always struggle with tiredness. I work full time and am a single mum, so the tiredness is a struggle to deal with and really gets me down as well mentally. I've had various dr appointments as thought it might be autoimmune related (I have a very lupus looking face rash and other symptoms) and blood tests. My ferritin is very low but nothing else of any significance flags up. I've been really ill over Christmas, and I'm just fed up. I'm frequently getting rashes, aching joints, stiff hands, and can sleep for hours. I'm happy to pay for testing/treatment I completely understand the nhs is over stretched (to a point I don't have much disposable income!) but don't know where to start or if they could help. Has anyone used any online blood testing or health checks that have been useful? Any ideas in fixing a shot to pieces immune system?! Any thing private that can be done with reasonable costs? Or am I being unreasonable?! Any advice gratefully received! Thanks

Sorry to hear you are struggling! Being ill all the time really sucks. Have you had your thyroid checked?

I've used medichecks, they are good. I've also used yorktest. There are also some clinics around where you can get private blood tests done by a nurse and they test them within 24 hours. It might be worth checking all your vitamin levels, vit D, b12, folate as if low they can make you feel terrible. But I wouldn't hesitate going to the Dr's with a list of your symptoms and asking to check for lupus, also ask to check your thyroid antibodies.

Have you asked your GP to run a full blood screening - of everything?

I also use Medichecks

Thanks I've had thyroid done and seems ok. Lots of results come up on the "low" end of nhs scales but nothing major except ferritin which is very low. I've been taking iron tablets for a while now and not really helping!
Antibodies test came back ok. I just seem to be getting nowhere and "Tired all the time" is such a broad statement, we're all tired, but its just debilitating and frustrating! Feel I'm being a pain when nothing shows up!

What was your ferritin level as that can make you feel truly awful if it's too low

If you have ME/chronic fatigue syndrome (I know you said chronic fatigue - wasn't clear if you meant you actually had it) you're likely to have normal blood tests and still feel shit. I'm sure you know there's no biomarkers for it (yet!). Doesn't mean your symptoms are any less valid though! The GP should run a full set of tests to check for all conditions that it could be first. Here's a good list from NICE that the GP should be looking at if you're haven't done it already

cks.nice.org.uk/topics/tiredness-fatigue-in-adults/diagnosis/investigations/

Ask your GP to prescribe the blood tests.

Lots of results come up on the "low" end of nhs scales but nothing major except ferritin which is very low.

Nothing will change for you until you get them up. ALL of them. What were the results and their corresponding lab ranges as NHS guidelines are too low compared to Europe before they consider treatment. For instance they won't treat iron levels until they are in single figures but it needs to be around 70! Iron is notoriously hard to get up.

I've had the same issue and interestingly enough it turned out to be ulcerative colitis without the usual bowel symptoms. I was diagnosed with ME/CFS, fibromyalgia, gastroenteritis and IBS before the cause was identified. Definitely bloods for thyroid, Vit D, liver and kidney function, folic acid but ask GP for a fecal calprotectin test, if raised then ask them to refer for colonoscopy. Good luck x

Thanks everyone. My ferritin was 27 a few months ago, the first time a Dr flagged it up. He said "Your ferritin has been low for 10 years" 😂 I looked at previous blood tests and the highest it ever got was late 50s. He said use diet to get it up, pharmist advised I'd never have a hope in hell of getting it up with diet alone with such a low reading. Dr said should be in triple figures.
I had diagnosed ME as a teenager, so always feel I'm suspectable but haven't had it diagnosed as an adult, one Dr did mention fibromyalgia possibly. All blood works come in ever so slightly above nhs guidelines, also have read we have some of the lowest readings we would treat in UK. I just feel I'm being a pain, even though its effecting me both physically and mentally now, and seems to be getting worse progressively. Working full time takes it out of me and often have to nap on days off/early evening.

I understand. I have an underactive thyroid and even when my results are 'normal' I still have symptoms. Drives me mad.

I'd love to know what it feels like to feel refreshed after a good nights sleep!

So I do understand how frustrating it is and it really gets me down x

Hi OP. Here's what I did, similar dreadful immune system.

Fitted a mirena coil which stopped me bleeding. Took iron every 48hrs with a high strength vitamin C tablet, two hrs before food or drink for a year on and off. Ferritin has gone from 16 - 118.

Take high strength vitamin D. I was at 52 at blood test a year ago. I'm now at 85, but working on taking it with Vitamin K and fat each morning. Plus I take magnesium glycinate every evening. Helps sleep.

I'm also taking 5mg folate as I was 7, on a scale of 4- 99,000.

Dont take vitamin B12 until you know your current level. It can falsely elevate your numbers. Once you have a true figure you will know if you can absorb it properly from tablets. If you are very low, your GP can give you B12 injections.

If you think you are in Peri, HRT helps massively.

Really appreciate the advice, will definitely be looking at what I can do myself. Lobstercrisps you've done amazingly, do you feel so much better?
Interesting about ulcerative collitus as I've spent all day on the loo after being run down and fluey for 2 weeks!
I've looked into iron infusions, they seem to be around £350 locally which is a lot but worth it if it works has anyone tried these before?

I agree with Lobster.

You really need to aim for the mid range of the lab results and not just scrape over the lower boundary. That is the cut off for prescribing something - it's where the sirens scream and the lights flash for the GP but it is not the cutoff for symptoms. Some people are fine on the lower levels but other people struggle a lot, so aim for the middle.

If you don't go out in sunlight (housebound or nightshift worker) then you can take up to 5,000 iu Vitamin D daily preferably with Vitamin K for absorption. A healthy person who goes outside needs a 1,000 daily maintenance dose in winter so everyone else needs more.

Some iron tablets need to be taken with food, others not, but both forms should be with Vitamin C for absorption, and no caffeine for 2 hours (including tea, chocolate, cola). Personally I take the mouth spray at bedtime instead due to digestion issues.

I've learnt that you can take upto 1,000 Vitamin B12 daily but watch this carefully as it could hide a long term absorption issue so if you get it up, stop the tablets, and if you get into trouble/symptoms return then seek out why as it won't be due just to diet.

You can get them all up with decent otc tablets but it can take between 3 to 6 months before you start to feel really well, the iron might take even longer, so start soon.

@Florencelatsy you'd have thought so wouldn't you!

Still have random dizziness and I'm just coming down with my second cold of the season (and I'm asthmatic so what this means is that it is going to my chest so i will have a grim pghlemy cough for 6 weeks).

That said, the winter I did my baseline bloods, I had 4 viruses and colds and a bacterial chest infection, so I have definitely improved since then.

I would very much suggest getting your B12 checked BEFORE you start supplementing. If you are very low, it can indicate that you don't absorb from food (meat, fish). If you have already supplemented, the advice is to wait four months for a fresh blood test.

I joined a vitamin D group and the advice is that is should be over 250nmol, I am currently at 85 and aiming for the mid - late 100.

Have you looked into auto immune conditions ?

27 is low you poor thing, no wonder you are tired, and there is no way in hell your diet will sort that. I would mention the tummy problems to the doctor too - they might give you a FIT test or refer you. Definitely worthwhile. Did they check for coeliac?

There is a thread on low ferritin here somewhere with people posting about iron infusions (I have ME but have high ferritin that is likely inaccurate as it can be the result of inflammation). I can't find it on my phone but you will probably have more luck than me.

I've used Medichecks as my doctor would not do a hormone test (I've had a hysterectomy and knew I wasn't absorbing estrogen patches) - the report they sent was excellent, not only was my estrogen low on the highest patch, but ferritin levels low, Thyroid low, Cholesterol high at over 10, various other things. I highly recommend, it forced my doctor to take some action. Cost about £130, then £35 for the blood to be taken at a private hospital, posted it off via Royal Mail, got results back via email 3 days later.