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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to feel like I could be really unwell?

105 replies

feelingrubbish22 · 18/04/2022 22:16

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 posts:
Original poster
feelingrubbish22 · 18/04/2022 22:17

Just to add I'm a normal height and weight and eat normally.

OP posts:
RoyKentsChestHair · 18/04/2022 22:19

Do you have the actual numbers for your blood tests?

What you said about your thyroid stood out as it can fluctuate a lot if you have Hashimotos and if you happen to have a blood test on a day when it’s in normal range that won’t help pin it down!

BurnDownTheDiscoHangTheDJ · 18/04/2022 22:22

This sounds a lot like me. I have fibromyalgia and problems absorbing iron but no other diagnosis. I can be bed bound got weeks at a time. Some drugs help but it’s not a diagnosis I’m entirely satisfied with. I hope you have better luck than me.

Original poster
feelingrubbish22 · 19/04/2022 07:23

I have thought mostly its a possible thyroid problem... Tsh varies but most recently it was 2.3

OP posts:
Teazels · 19/04/2022 07:33

Have they tested for antibodies in your thyroid test?
You sound just like I did when my antibody readings were through the roof. My tsh was in normal range though, so they basically shrugged and sent me on my way!

BeerLoas · 19/04/2022 07:44

Could this be hormonal? Do you keep a diary of symptoms, track it with your cycle as well as what you eat etc.?

PollyPutTheKettleOnKettleOn · 19/04/2022 08:16

Your doctors really ought to be listening to you, it infuriates me when they dismiss things like this.

I'm not an expert, but I believe some thyroid issues aren't always picked up by a TSH test and some people need their T3 & T4 tested too (?)

I do know that thyroid issues can take years to be diagnosed in women.

If you can afford it, can you see a private gp for tests? Alternatively, there are companies now that offer remote blood testing - Google at home thyroid tests etc- where you can be clear on exactly what levels are being tested.

See what they say and take results to your doctor if indicative of anything.

It's really not acceptable to dismiss your symptoms, even if not thyroid there are other potential causes and if nothing else then you'd expect them to look at the possibility of CFS.

Find a new gp if nothing else and don't be afraid to shout for the treatment you deserve. Good luck op Flowers

PollyPutTheKettleOnKettleOn · 19/04/2022 08:18

@BeerLoas

Could this be hormonal? Do you keep a diary of symptoms, track it with your cycle as well as what you eat etc.?
Oh I meant to say keep a symptom diary too.

Even if not hormonal, if you can take a symptom diary to your gp with details of how many hours you slept etc then they might take you more seriously. Be clear on how the fatigue debilitates you.

TheProvincialLady · 19/04/2022 08:19

I agree with getting tests done privately but I wonder if it would help you to give up sugar and caffeine and really feed your body well. It’s very easy to get into a cycle of eating sugary, carby crap because you’re feeling low, which causes you to feel low, so you eat more crap.

Original poster
feelingrubbish22 · 19/04/2022 10:46

Thanks everyone, So far this morning I already feel better. But for how long?

I have never been tested for Antibodies. I asked my Gp for this to be tested and he said that it isn't usually something they test for? How bizarre.

OP posts:
DrCoconut · 19/04/2022 10:53

Have you been tested for coeliac disease? It makes you feel awful and not just classic gut issues. I identify with so much of what you say and I was diagnosed just over a year ago. I also have extremely high B6 which literally makes you feel like you're being poisoned (you are essentially) and that's harder to solve re cause/solution as a malabsorption condition usually causes deficiency if anything. Tests and watching and waiting are ongoing for that.

housemdwaswrong · 19/04/2022 11:00

'The tests are fine.' T g is trope drives me insane. My tests were fine for years...because they were testing the wrong sodding ones. Ask them to run an ana test to rule out autoimmune, (sounds plausible), and I'd ask for esr and crp for inflammation/infection too. They'll have tun full blood counts presumably.

I'd be arsey and push too. I didn't get any results, and walked out and registered with a different surgery when I was pushed to go on anti-depressants for the umpteenth time. When the right tests were run they were far from normal, with levels 130 times higher than they should have been. This after years of being told it's all in my head. I wish I'd pushed harder.

Original poster
feelingrubbish22 · 19/04/2022 12:02

@DrCoconut Hi, no neither. Are these picked up through blood testing? The feeling of being poisoned is what it feels like. Like I said, at times I feel like I am dying. (I know i'm not, but i'm that unwell!)

@housemdwaswrong I have had the depression card pulled from them time and time again. I don't deny I have/had depression, but this is a separate issue and they refuse to accept that. I am thinking of changing surgeries but i'm not sure if I'll just find the same situation somewhere else.

My reason for posting is in the hope that someone might identity with my symptoms and give me advice or suggestion.

OP posts:
EssexLioness · 19/04/2022 12:13

I felt like this and blood tests showed I am in menopause. You are very young for that so unlikely. However, I am wondering if it could be some other sort of normal issue maybe. Have you had all your hormone levels tested?

housemdwaswrong · 19/04/2022 12:34

My suggestions are move surgery if you can, if you find yourself in the same situation you've lost nothing.

I'd ask for the bloods I've said; ana, crp, esr, ena if your ana is positive. There are 80 odd autoimmune disorders, many with crossover symptoms and many that your symptoms could possibly fit...the crushing fatigue and heavy limbs in particular.

If GP refuses to run bloods, I'd think about getting them.done privately...expensive but cheaper than having to leave work.

CrunchyCarrot · 19/04/2022 13:09

Underactive thyroid, and possibly very low iron/Vit D etc, springs out at me as being possible causes.

I was diagnosed with an underactive thyroid some 6 years ago now. I felt like death warmed up at the point I got a blood test (did it privately via a finger prick blood test company as I'm terrified of needles). I suspected my thyroid as my mother had thyroid disease. At that point I felt like I must be seriously ill with something, maybe cancer! The blood test came back with raised TPO and TG antibodies (both associatied with autoimmune thyroid disease) although when I took my results to my GP she said I needed to wait and retest in 6 weeks as my other thyroid labs (TSH, FT4, FT3) were still in range.

I now know that being 'in range' is NOT the same as being optimal or indeed, being well! So if you can get hold of your actual blood test results and get antibodies tested, you may find you have an answer. Ideally get your Vit D, ferritin, folate and Vit B12 tested, too. I got my test from Medichecks.

Depression is associated with hypothyroidism - but if you just take antidepressants you won't be helping your thyroid, in fact it'll make things worse. Plus you will get palmed off as just being depressed.

Please push for more tests or get private ones done as I did, there are many people with thyroid disease who are very competent at diagnosing it from labs! Better than doctors. Hmm

Original poster
feelingrubbish22 · 21/04/2022 21:41

So after feeling a little more 'normal' tonight, the dizziness and headachy feeling has set in again. Its like the front part of my brain is foggy and sitting up was making me feel spaced out.

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. Just having a rant as I have so much I want to do but feel too ill.

OP posts:
BeerLoas · 21/04/2022 21:52

I think you need to log everything in a diary. If it is hormonal it's not to do with the regularity of your cycle, it would be a crashing oestrogen level for example during some weeks.

TheGlitterati · 21/04/2022 21:54

Have your calcium levels been checked? It’s often ignored but high levels can cause fatigue.

any other symptoms?

lightand · 21/04/2022 21:57

What happens at weekends, or when you are able to have time off?
How do you feel at those times?

I am a great believer in changing some circumstances, to see what happens on those occasions. Can be enlightening.

m00rfarm · 21/04/2022 22:01

I am sure this is not the issue, but I found that when I started medication for my high blood pressure (230/115) it dropped far too quickly, and within days I could not walk from one side of the room to the other, I was too tired to sleep, I could not eat as my jaw muscles ached after the first few bites. If your BP is dropping regularly, then could this be part of the issue? I reported back to the consultant, and they dropped one of the tablets, and within a few days I was almost back to normal, and within a week I was playing tennis four times a week as usual, whereas the week before I could not even walk to my car.

IncessantNameChanger · 21/04/2022 22:06

You sound like me. I have crushing fatigue and heavy limbs. I'm almost about to get into a fatigue clinic but it's like climbing up Niagara Falls as my gp keeps robbing me off.

I have sleep apnea which is being treated well.
Had low vitamin d but its improved

Just been discharged from Rheumatology who said cfs and I need to be reffered but happy days- my gp said they they never got that letter so cant help me!

I had had so many blood tests its unreal. I'm actually going to get my husband to talk to them as nothing I say gets me anywhere. For a decade!

Bitwornout · 21/04/2022 22:19

I have Hashimoto's disease and it's very easily diagnosed. Your TSH levels would clearly show you have a problem with your thyroid. To diagnose Hashimoto's you would then have a thyroid antibody test. I find it odd a Dr would say your thyroid feels wrong but not explain further. Do you have a visable lump? If you are really worried you could have a ultrasound to check your thyroid. Other symptoms would be thinning hair, the ends of your eyebrows disappearing and also your heart rate would be getting lower. I'm sorry you feel rotten and hope you get it resolved soon.

Discovereads · 21/04/2022 22:22

Add to your list blood tests for glandular fever. Have you had covid? You may have post viral fatigue…ie CFS/ME or Long Covid.

wendyoz · 21/04/2022 22:28

It does sound potentially thyroid related. Have a look at Dr Datis Kharrazian 's posts/books. He is a leading authority on functional medicine. Good luck

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