to feel like I could be really unwell?

[feelingrubbish22]

So I don't think i'm actually dying as this feeling has come and gone over a few years, but more recently i've been feeling so unwell, that if I was told I am dying, I don't think i'd be surprised. Its just no quality of life.

I work full time, and I don't even know if I can continue to if I can't sort this out. I worked 8 hours today and felt so spaced out and like I could pass out at times. So tired, and my muscles, in particular my arms, feel like weights, I could barely lift something up onto a shelf. Even standing and walking about I felt off.

I am only in my early 30s, and I know this is isn't right. But doctors keep telling me i'm fine! Blood tests keep coming back 'fine'.

I've tried to explore different routes, taking vitamins, vitamin D, iron tablets from over the counter when my ferritin was low. (its now fine apparently) B12 always been fine. I've had my thyroid tested multiple times and been told 'fine' and tsh is within range. I have however been told my thyroid doesn't 'feel' right when a doctor felt it, and I should be having tests done soon.

I'm also not diabetic, as been tested a few times. I have on couple of occasions had low blood pressure, but more recently when doctors have tested it, its been fine. I've even tried to block out the idea that I feel so ill and just carry on and work through it but that hasn't helped either.

The weird thing is, there are times this comes on and I can feel this way for about a week or two, but then I can have another few weeks where I feel much better, but not at the level of energy I expect I should have. This made me wonder if it could be hormone related? But if so, what? My periods are every month as normal.

When I'm having one of these week long 'episodes', I notice the only things which make me temporarily feel better is to eat sugary foods, and/or take aspirin, paracetamol and caffeine. After a couple of hours though, I'm back to feeling horrendous.

Has anybody got any idea what the heck is wrong with me? At this point I would go private but with the cost of living rising, I really can't afford to!

I'm just miserable.

OP I felt like this for years. Bloods came back OK. But then started to flag up a problem with my parathyroid gland. It sits behind your thyroid and controls the calcium in your body. It gives symptoms like you describe but also very much like fibromyalgia which I've also been diagnosed with. My parathyroid levels aren't high enough to warrant intervention so just on watch and see. My vit d was low so have had that seen too. But lately I've discovered that going gluten free has actually benefitted me in some of the symptoms I was getting. We have history of bowel disease in family. My mum is now under consultant for hers and i have ibs so wanted to cut down food that caused inflammation. I would ask the doctor for a full blood test which includes parathyroid, calcium, vit d and inflammatory markers if they haven't done so already. Also see if you can gain access to you results as you will see if you are the higher end of what the parameters are for the results if that makes sense. Xx

Have you got the actual results? Mine were "fine" for years
Except they weren't as they had missed opening my white blood cell count and spotting I had virtually no neutrophils

There's something about arms.. I'm sure it's low iron, I read an article somewhere that said it's common and most noticeable stuff like hanging laundry up

To me it sounds like you have chronic fatigue. I know someone who had this and couldn't work for a long time because everything was just so tiring.I hope you get some answers soon OP but this is what it sounds like imo

Try giving up caffeine in all forms for a week. Including chocolate, green tea, things like that. Some people don’t metabolise it properly and it can leave you feeling awful.

Also if you’ve had lots of tonsil problems?

I also felt like I had something seriously wrong with me. Blood tests showed sub-clinical hypothyroidism but it didn’t feel it was sub-clinical to me!! The doctor didn’t want to treat me but (luckily) my symptoms got worse and so did my blood test results (TSH wen to 79.0) and then it wasn’t sub-clinical any more. Unfortunately I didn’t t do well with thyroxine but eventually got sorted with a combination of T3/T4. Please keep going thinking it might be your thyroid.

Get FULL thyroid panel on medichecks. And then look at thyroid uk will help you interpret them . Also medichecks do other tests as well .

Are you using birth control?

It sounds very similar to how I felt when I first had ME/CFS.

You’re describing how I’ve felt the last 5 years op. Sometimes just lifting the kettle is an effort. I used to be very healthy and active but then started struggling lifting usual weights in the gym and went down hill. Vitamin D and ferritin was low but symptoms of crashing fatigue and weakness didn’t ever improve with supplements. Then thought was peri menopausal and saw private specialist and tried hrt but no help.
Resorted to having a genetic test which looks at dna mutations which showed lots of issues with my thyroid hormones and oestrogen along with being a poor converter of vitamin d. Was recommended to see a thyroid specialist but as this would be more money I’m holding fire for now. Should add a lot of my close family have diagnosed thyroid issues and are on medication. Good luck op - really hope you get to the bottom of it and so hard when the tests come back normal but we know something isn’t right.

I can’t offer any solutions but just came on here to sympathise and say I’m in exactly the same boat. Every time I’ve had blood tests they say they are fine. I’ve even had an mri to check for ms which came back normal. I’m sure the dr just thinks I’m a hypochondriac. I’ve been prescribed with AD’s which I’ve now been on for years but do nothing to change the underlying problem in that I just feel so bloody tired and unwell all of the time. i think we just get written off. I hope you manage to get some resolution, keep us updated if you do.

You have my sympathies. I started to get sick at 27. I have lots of crappy food sensitivities which culminated into something that reflected an autoimmune disorder (I have never had a diagnosis). All tests were normal but I was extremely ill and have been chronically unwell for the best part of 10 years now. I have issues with all sorts of things but tea and coffee cause me to get bad neuropathy (not caffeine issue because can drink coke np). Interestingly for me a lot of plant foods cause me problems - so every time I I tried to eat all these 'amazing' health foods I got sicker and sicker. And it wasn't gut problems it was neurological, joint/muscles/fatigue/feeling awful/mental/brain fog etc etc. I discovered something call salicylate intolerance which matched a lot of my symptoms. I also came across this woman in the Daily Fail: GP who gave up fruit and veg - she had oxalate problems but salicylate issues can manifest similarly. It sounds crazy but I got most of my health (and sanity) back though I still have inflammation I am nowhere near as ill as I was (and I also thought I was dying and had something degenerative). Just an idea. I hope you find some solutions.

Lots of relevant ideas here including fibromyalgia which I developed in my 30s. I had treatment 20+ years ago but I sometimes I wonder if I still have it. Anyway, then, all that time ago, the diagnosis was done by a neurologist but I am not sure what pathway it would come under now. Good to see lots of people making suggestions though, you need to be determined to get to the bottom of it all.

Hi OP, just a thought..
A few years ago Doctor in the House (BBC) featured Dr Chatterjee helping a woman with symptoms similar to those you describe and no clear diagnosis. Her name was Nicola Singleton and she had been feeling ill for years. Dr Chatterjee worked on assumption symptoms were largely gut related so overhauled her diet and had her drop the painkillers, which were causing side effects.

A relative of mine with v similar health issues followed the same advice and her health was transformed. She drank
kefir to replenish gut flora, ate lots of veg and protein, cut sugar, breads and alcohol. She also took vit b12, vit D and co-enzyme q-10.

I realise your situation may be entirely different but the impact of these changes on my relative was so transformative I thought I should mention. Look at Dr Chatterjee

drchatterjee.com/

drchatterjee.com/what-chronic-illness-taught-me-with-nicola-singleton/

So frustrating for you OP, I really don't know what to suggest as I know myself that private healthcare isn't an option for many. It seems that GPs are becoming more and more "textbook" in their responses/justifications for inaction.

I have Hypothyroidism. At one stage I held the record for the highest TSH level in the UK 😅 I commenced medication and after 3 long years I felt much better HOWEVER.. 3 more years after that and I was back to feeling dreadful. GP and Endocrinologist both say "bloods are fine" but I know in my heart (and body) that I am very much not fine. I am only 31 and feel similar to you, my presentation is almost that of someone suffering from depression but it is sheer exhaustion. I've been here before.

I'm convinced the "bloods" they do routinely are far from all encompassing. I know they are missing something. I have thought that perhaps the medication creates false readings but I have given up after 6 years of feeling utterly rubbish and constantly fighting with GPs and Endo's.
Someday when I win the lottery I will go private and all my problems will be solved 😅

Virtual hand-hold for you OP 💐 I know just how soul-discouraging it must be for you.

What’s your working environment like? Are you getting enough daylight? If the spaces you work in are poorly lit your body’s circadian rhythm can be tricked into thinking you’re in sleep mode. Often we reach for sugar or caffeine to counteract this feeling when when what we need is a walk outside in daylight or more naturally lit work spaces.

Are you sure you’re not me ? I’ve lived with these symptoms for years. And not one doctor has been of any help.
I’d suggest you get a copy of your blood tests ( you are entitled to a copy) Look at each result and the range that is ‘ normal’ — these will be the figures in brackets. Drs will tell you your result is normal if it’s 1 number inside the range, when to be optimum it needs to be much higher. ( except TSH which needs to be low)
Thyroid tests should be done first thing in the morning , without eating or drinking. TSH, T4 and T3 should be tested. There is also a reverse T3 but UK doctors rarely do this test.
look at Health Unlocked. Private blood tests are available through Blue Horizon ( can’t think of other company I used but try googling )

How's your diet? Are you veggie? Restricted?

I’m sorry you feel this way, it’s not nice.

I had this, it was hypothyroidism for me (autoimmune), I need meds, very high vit D and some specific supplements (got advice privately) plus low carb to actually feel well. It’s been a journey.

Also agree the range isn’t everything. When I am well, my TSH will be under 2.0 but the range goes higher than that. But if I’m over 2.0, something is definitely up and I get more symptoms. For me, my TSH is more sensitive than T4 and tends to be a better indicator (although both are always tested).

Hope you get some answers and progress soon.

Have your calcium levels been tested. A colleague was being treated with levoothyroxin for under active thyroid with no success and it was her parathyroid. The calcium affects your muscles. Making them feel well and tired. She is on correct meds now and feeling great. I have b12 def and under active thyroid and had similar symptoms to yourself. Hope you get sorted out OP

I feel you. A few years ago I went to the drs as I was so exhausted I could sleep for 12-14 hours and still need coffee/energy drink and sugar to get through the day. I was drained doing basic things and working 8 hours was tough. I felt rotton all the time. The gp took blood tests and it came back as inconclusive for gluten intolerance. I was referred to gastro and had an endoscopy and I have Coeliac Disease. Cutting out the gluten gave me my energy back and I don't pick up as many colds/infections anymore. Ask your GP to do full bloods again to check and ask them to check your ttg levels just incase.

I hope you get sorted.

Have a read about POTS, Postural Orthostatic Tachycardia Syndrome.

I wonder if you would mind sharing the dosage of vit D and names of other supplements that were recommending? I am willing to try anything at this point.

Do you think the supplements helped? I've also noticed the low carb does give a little more energy but still a far cry from "normality".

Chronic fatigue syndrome?

What you need is an empathetic doctor — one who’ll listen and won’t gaff you off because your blood tests are normal.

Don’t give up ❤️

I had similar symptoms for years and was being told my thyroid was normal. It went on for so long I could map periods of low then high. I was sent to a psychiatrist who was about to medicate me for bipolar when I started to return consistently hypothyroid tsh levels. I was started on levothyroxine but it didn’t help much, my bloods were within the reference range so I was sent to an endocrinologist who discovered I got symptomatic when my tsh went over 3. Different countries and even labs have different reference ranges, there is no such thing as normal and there will always be people who do not fit within the reference range. Psychiatrists discharged me as soon as they discovered hashimotos. I loved
the hyper phases - every February I’d
lose weight and get very active and every may I’d get exhausted, extreme dry skin, hair falling out and gain weight. Like clockwork for years. It’s the feeling in my arms that tells
me when I need to go back to have my medicine checked. The only reason I was convinced it was my thyroid is because my dad is hypothyroid too and we had all the same symptoms. It took almost a decade for them to work out it was his thyroid and seven years for me.

Sometimes I just want to walk into a&e and just say 'please sort me out', i'm sick of waiting for appointments and not getting anywhere cos the tests which are carried out seem bare minimum.

While I understand the frustration, don’t do this. It won’t go down well and you want get far and likely come out complaining the same as you are now (not to say current complaint not justified).

What people fail to realise is that A&E will not assist if there is no immediate threat. They don’t exist as a fast track for tests either. If no immediate threat you are referred back to your GP to manage via appropriate pathways (incl specialty referral if necessary). If it makes you feel better you can go and be told no immediate issue - which does NOT mean you are not unwell, just nothing immediately life-threatening or requiring urgent management, and then you are kicked back out the door but you have immediate peace of mind? Never know, maybe something immediately life-threatening may be tossed up and then that aspect will be dealt with, but if not you are just back to where you are today.

If you don’t believe the GP is managing you appropriately, then make a written complaint to the practise manager. That’s the correct route to sort that out.