Constantly tired with brain fog, please help! - uninterested GP *[Results now added]

[Notanothercherrybakewell]

Hi all,

I've not been well for a long time and need some help in trying to work out what might be the cause.
It is next to impossible to get an appointment at my GP and when I do I am always so rushed and brushed off so am hoping if I can go in armed with 'I think it might be XYZ....' or 'can you please test ABC...' I might get somewhere or be taken seriously.

• I always feel tired. Constantly. I could sleep for 10hrs and still feel dead on my feet.

• 3-5 times a week I will get complete exhaustion out of nowhere. I will start to feel so tired that I need to sleep within 15-20mins of the feeling starting. This usually begins mid afternoon and I will need a 2-3hr sleep to get past it. I will wake up feeling like i've been hit by a bus for approx an hr until it passes and I feel fine again. most of the time this happens after i've had food (but could be coincidence due to time of day)
• Brain fog. I can forget what I have been told literally during the conversation. I can't focus or keep a train of thought. I feel so overwhelmed when this happens as I used to be really on the ball and engaged.

-Hair shedding more than usual

• occasional constipation
• horrible mood swings (tend to be much worse after I have woken up or am needing to sleep)

-Low mood

I had blood tests 2 years ago and was told nothing was out of the ordinary. I was prescribed something for anxiety/depression as they felt the mood swings and low mood was causing this. I took them for a few weeks but felt horrific on them and was told to stop with no follow up.

I really need some help and a point in the right direction. My life is zipping by at lightning speed and I want to enjoy it!

So super bizarre -

Test results came back via text today, just a generic thing saying 'your tests results show you could benefit from lowering your cholesterol, we recommend a repeat test in 1 year'.

Was really not what I was expecting at all

I called the practice and was told they can't give me the exact numbers or names of the tests carried out but will pass my request on to the GP who will get back to me next week.

Any thoughts?

Oh no! That is so disappointing! I am afraid I have no experience apart from Thriva so can't help. How much did you pay?

Sounds very text boot hypothyroidism. Blood test will confirm.

I haven't read all the responses but I had all your symptoms and was diagnosed with Addison's disease. It's very rare and can be a gradual onset over many years (I had symptoms gradually getting worse for 7 years and docs put it down to menopause). See if you can get your morning cortisol measured, it should be around 400/500 and mine was 102! To be fair, your symptoms could be any number of auto immune problems ( I have hypothyroid, vitiligo and alopecia as well) but it was when you mentioned feeling dizzy when standing up (postural hypertension / hypotension? ) It caught my eye. I had this for months and months, along with joint pain, fatigue, constipation, hair loss. Finally diagnosed after being rushed to.a&e after norovirus when bp was through the floor. They thought I had sepsis to start with. Good luck and don't give up! X

You can and must get your test results. They are yours and you are entitled to a print out.
Insist they send it, so you can check what they did test for. If they did cholesterol,they may not have done the others.
Vitamin d is often out of range and they will say it is okay. And so on.
You must see your own results.

Massive dose of vit D should sort the brain fog. This is the daily dose in France and can be ordered online.

I’ve got All of the above, as in low vit b12, hypothyroid and anaemia and I feel like you. I’d add I wonder if you have other autoimmune diseases as well? Primary Biliary Choliongitis could account for the high cholesterol, as could other things of course.

I got my print out today and according to all the ranges etc. Everything looks pretty middle of the road.
I don't think they tested for any vitamin deficiencies, so I will call and ask for those to be done. But I'm at a loss now as to what it could be. The practice basically said its all good and kind of shrugged me off

I think you need your vitamin d checked.

All the ones pics look like they are in the normal range from the numbers given

Had exactly the same spent 50 quid on Amazon for vitamin d3, magnesium citrate, b12 spray and nordic fish oil. Feels loads better also trying to eat salad (with dressing) and protein at every meal and I do feel better for it

OP: under active thyroid here (Hashimotos). I know when it’s playing up as I get exhausted (not like tired, like “if I don’t sleep now I might pass out”) and constipated. They always check my TSH and T4. Can’t see your T4 on there?

Have they not checked your CRP? Bonkers if they haven't and agree you need your vitamin d testing, I felt grim when mine was critically low.

I’m trying to remember what it all means. I think TSH (thyroid stimulating hormone?) is what tells your thyroid to produce T4 (thyroxine?). So if your TSH level is too high it will be telling your thyroid to produce more T4, and if your TSH level is too low it will be telling your thyroid to produce less T4. But I believe it is possible to have a normal TSH level and your body still have the wrong levels of T4. Hoping a doctor comes along soon because I don’t feel qualified or confident in anything I’m saying (helpful yes).

I’m a trainee nutritional therapist. We see this all the time - exhausted people at the end of the road.

To save money, ask for vitamin D levels to be checked through your GP.

GP tests for B12 aren’t very accurate unfortunately. You can get private tests through someone like Thriva.

If you have a local BANT registered nutritionist, a couple of visits could really help unpick this. Not a dietician who will work within the constraints of the NHS.

I would suggest a full thyroid panel (not just TSH), vitamin D, B12. Possibly various tests for gut function.

If you don’t want to spend the cash, then I would take a good vitamin B supplement, vitamin D plus K, magnesium (at night) and a multi mineral containing zinc. I would trial gluten free for two weeks too.

@Babs709 is right. Your TSH looks good, but it isn't actually a thyroid hormone, it's a pituitary hormone. Standard NHS testing does not pick up secondary hypothyroidism, where TSH is in the normal range, but the thyroid hormones, T3 and T4 are low in range. Lots more information and advice from ThyroidUK.

You need B12 and folate, vitamin D and ferritin testing to rule in/rule out low levels of any of these as a cause of your symptoms

Do you work OP?
Do you exercise? Walk?
Do you socialise?

You're all fab for getting back to me so quickly!
I will go through all the replies and make a comprehensive list of everything I want to ask my GP for tomorrow. The GP themselves are fabulous but getting past the receptionists is a huge challenge so going in fully informed will help me massively.

I'm not adverse to paying for tests privately if it means I get to the bottom of this.

@Decentsalnotime
Im furloughed since March, get out for a good long walk everyday but no real exercise and no socialising due to lockdown etc.
I don't drink, don't smoke and size 8 with average BMI.

You must get the vitamins tested
B12
Folate
Ferritin
Vitamin D

@Notanothercherrybakewell, how did you get on with the GP? I can’t see calcium on your test results, so if you’re still getting nowhere do ask for them to check calcium, vitamin D and parathyroid hormone. They have to be done together, the first two will be into a gold topped tube, but the PTH must be in EDTA which is lavender.

@Sunbird24 Thanks for checking in on me! I am still waiting for my 'phone consultation' on the 16th. Once I've had that they will see about doing more tests so I am going to be very firm in asking for the things mentioned on here. It's moving at a snails pace but at least it's moving now

Good luck! Hope you get some answers

Have you looked at fibromyalgia? There's no test for it which is frustrating but your symptoms sound textbook

You could probably get Vit D, B12 and your thyroid tests done on Thriva for under £60. They often have generous new user codes floating around.
Don't forget to take K2 with your vit D supplements. I get an all-in-one spray from Holland and Barrett. Took a loading dose for the first 6 weeks.

[quote Sunbird24]@Notanothercherrybakewell, how did you get on with the GP? I can’t see calcium on your test results, so if you’re still getting nowhere do ask for them to check calcium, vitamin D and parathyroid hormone. They have to be done together, the first two will be into a gold topped tube, but the PTH must be in EDTA which is lavender.[/quote]
I’m another that had a parathyroid issue. It’s far more common than people realise. Get your calcium and parathyroid hormone (pTH) checked