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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:
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Willowweb · 09/05/2025 13:12

Having parathyroidectomy in the next few weeks. Top specialist surgeon. Still scared especially of general anaesthesia and maybe my voice being affected. Nervy and tearful all day. I'm in my 60s but generally fit and well. Hate needles etc. looking for reassurance

Goodyetalso · 21/01/2023 10:39

CrunchyCarrot · 21/01/2023 10:19

So sorry to hear of your diagnosis @Goodyetalso, I've a friend with Lupus. Best wishes for your treatment and that you will get it under control.

Thank you 💐

CrunchyCarrot · 21/01/2023 10:19

So sorry to hear of your diagnosis @Goodyetalso, I've a friend with Lupus. Best wishes for your treatment and that you will get it under control.

Goodyetalso · 20/01/2023 23:03

Anxiouslikenoneother · 20/01/2023 16:43

@feelingrubbish22 do you mind me asking if you ever got to the bottom of feeling so unwell? How are you doing now?

I’m not the OP but I also posted in this thread about 9 months ago. I was extremely unwell and getting nowhere as my bloods were mainly normal.

long story short, I ended up with an emergency rheumatology appointment as I rocked up at the doctors with a classic malar rash on my face (which, incidentally, I saw them about years ago and was fobbed off). I paid for a private appointment, had an ANA test which came back with an extremely high positive, they tested some other stuff and it turns out that I have Lupus. I have been practically begging doctors to consider that I have an autoimmune disease for the part 10 years and been treated like a hypochondriac every time. Keep pushing, everyone - you are not crazy and it is not all in your head. Unfortunately my medication isn’t working yet but I’m hoping that it will help soon.

Anxiouslikenoneother · 20/01/2023 16:43

@feelingrubbish22 do you mind me asking if you ever got to the bottom of feeling so unwell? How are you doing now?

LiveintheNow · 05/05/2022 07:33

Check for thyroid antibodies to see if autoimmune, any history of other illness in family?

TheGlitterati · 02/05/2022 18:57

You aren’t making a fuss, you definitely need to be looked after.

i am completely cured. Life is good again 😊

TheGlitterati · 02/05/2022 18:56

@WingingItSince1973 jeez. My kidney scan revealed a problem with my kidneys, and I needed a nuclear scan to check the parathyroid’s properly. You also need a dexA because you could have problems with your bones that you won’t know about - kidney problems and osteoporosis or osteopenia bump you up the surgical list!

WingingItSince1973 · 02/05/2022 18:49

No haven't had any scans apart from the neck ones which was just an ultrasound x

WingingItSince1973 · 02/05/2022 18:48

TheGlitterati · 02/05/2022 15:13

P.s I had my surgery in the middle of lockdown 2020 so covid is no excuse to be ignored. Have you had your dexA and kidney scans?

Sorry also should ask how are you doing? Sorry OP to hijack your post. Was your operation a success @TheGlitterari ?

WingingItSince1973 · 02/05/2022 18:46

TheGlitterati · 02/05/2022 15:13

P.s I had my surgery in the middle of lockdown 2020 so covid is no excuse to be ignored. Have you had your dexA and kidney scans?

Thank you so much. I was on the Facebook group and that surgeons name rings a bell. After the meeting with the endo I felt like I was making a fuss. Really appreciate you replying. It's given me the motivation I need xxx

TheGlitterati · 02/05/2022 15:13

P.s I had my surgery in the middle of lockdown 2020 so covid is no excuse to be ignored. Have you had your dexA and kidney scans?

TheGlitterati · 02/05/2022 15:12

@WingingItSince1973 your GP can refer you direct to a surgeon. Try and get to Shad Khan in oxford, he’s a legend. And John the fb group hyperparathyroid action 4 change U.K.

they will give you the support you need, there’s even a medical group with surgeons on there helping.

I assure you your disease is not mild (had it myself) and you deserve a cure! Negative scans is good news - means your parathyroid’s are where they’re supposed to be - behind the thyroid and invisible! You need surgery.

WingingItSince1973 · 02/05/2022 11:59

TheGlitterati · 01/05/2022 22:22

@WingingItSince1973 theres no such thing as mild parathyroid disease. If you have an adenoma you need it removed before your kidneys are shot, your bones are thin and weak and you have a heart attack or stroke. The longer you have the disease the more likely that’ll be, it’s got nothing to do with numbers. Tell your moron GP and/or endo to refer you to a surgeon and get your life back!

When I say mild it's just a term to say that my pth is raised but according to my endocrinologist not enough for action. Yes its extremely frustrating and I've battled for 3 years pre pandemic and then nothing for 2 years. I've seen him 3 times. My doctor seems to have more knowledge and worry than he does. I'm having my bloods checked tomorrow for the first time in 2 years so if it comes back raised and my calcium is the same then I'll ask to be seen my a different consultant. Believe me I have been trying to get this sorted but the pandemic then shut all the doors for me and we had a major family issue to sort out. Before that I had 6 monthly bloods and pth rose outside the acceptable parameters but endo wasn't interested. In fact he said to me that my pains etc couldn't be causes by the pth levels because they weren't high enough and he sees patients far worse than me. It's such a simple (yet daunting) operation. Oh also my last scan on my parathyroid showed they looked fine although research had shown me that doesn't mean much if my levels are rising.

TheGlitterati · 01/05/2022 22:22

@WingingItSince1973 theres no such thing as mild parathyroid disease. If you have an adenoma you need it removed before your kidneys are shot, your bones are thin and weak and you have a heart attack or stroke. The longer you have the disease the more likely that’ll be, it’s got nothing to do with numbers. Tell your moron GP and/or endo to refer you to a surgeon and get your life back!

WingingItSince1973 · 01/05/2022 22:11

hesbeen2021 · 25/04/2022 11:29

Apologies if this has already been mentioned but consider para thyroid

I mentioned this earlier on. I have mild parathyroid disease and fibromyalgia. The symptoms overlap. I'm being monitored for the PTH hormone. Have another blood test Tuesday x

TheGlitterati · 01/05/2022 16:40

@IncessantNameChanger as a stand alone test that doesn’t mean much, but a re test with PTH and vitamin d will give a clearer picture. If PTH is high normal or higher than the normal range, it can indicate normocalcaemic hyperPARAthyroidism (most GPs will miss this so feel free to post your results here)

IncessantNameChanger · 29/04/2022 17:09

@TheGlitterati my serum calcium is in normal range 2.43

TheGlitterati · 28/04/2022 16:49

Crp, vitamin d and PTH with your calcium which is ideal on top of everything else @IncessantNameChanger. Have you had a previous elevated calcium result?

IncessantNameChanger · 25/04/2022 21:26

Can anyone make out what tests my Rheumatologist has requested?

I was also looking up private cortisol tests.

strangely I also feel my worst around 4pm.

op have you had a HbA1c blood test. It measures for high blood sugars over a six week period. As a red blood cell lives for six weeks you can see from this test if your pre diabetic.

also I have quite a few things that aren’t alarming but aren’t great either. Iron to low but in ok range, blood sugar to high but one level below pre diabetes. Vit d too low but was ok on the next test etc. These things all add up I feel.

I don’t feel like I will ever go to the bottom of it either. My go couldn’t be more dismissive if they tried. It’s been at least 7 years of feeling truly wiped out

to feel like I could be really unwell?
hesbeen2021 · 25/04/2022 11:29

Apologies if this has already been mentioned but consider para thyroid

IncessantNameChanger · 25/04/2022 11:25

OP I was looking at the medicheck blood tests last night and the advanced thyroid one seemed quick reasonable

TheGlitterati · 23/04/2022 22:31

Weight gain and fatigue is a sign of hypercalcaemia. You may have other symptoms too you haven’t considered as it’s very non specific. Back to GP.

ask for calcium, active b12, magnesium, sodium, thyroid function.

Original poster
feelingrubbish22 · 23/04/2022 21:52

I've read each and every post, thank you. Today I felt so tired, I had a lie down this morning. Then I pushed myself to go out to the supermarket for a few hours. Came down, felt 'headachy'/dizzy/groggy so lay down again for another few hours. (Possibly napped). The dizziness seemed to be across my top frontal area of my brain (it felt 'heavy') and I was very tempted to reach for the pills as usual but I held off. Had some dinner and feel a little better now.

When I take aspirin/paracetamol and eat, it temporarily makes me feel better. However, I only eat when I need to, as I gained weight recently after being the same weight for 10 years (unusual)

I have tried taking Ferrous Sulphate for months now, no difference in symptoms, i've taken a high dose vitamin D, no difference.

Tsh always seems to be around 2. It has been 4 in the past though. I don't take any medication for thyroid.

At worst i'll think I must have a brain tumour. Other times I think its an undiagnosed thyroid condition. I appreciate people mentioning the private blood tests which is something I will look into but money is tighter now.

OP posts:
UndertheCedartree · 23/04/2022 21:33

I have only recently been started on thyroid medication. I have been feeling awful and I relate to the feeling of heaviness in the limbs. My thyroid has been up and down for years. From the recent research I have done it seems this is often the case as the thyroid gets gradually damaged.

My other thought is Long Covid. You can get it even from having Covid mildly.