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.

I have started the gym and I'm still gaining weight

@IncessantNameChanger if you are managing exercise without all your symptoms getting worse then a ME/CFS diagnosis looks less likely unless v mild. If you are gaining weight without eating more then I would agree it is worth looking into a missed under active thyroid. Companies like medichecks do full thyroid screening for around £80. GP will only do TSH, not T4, T3 and thyroid anti bodies. Should you decide to, once you have your results I would head to the thyroid board on healthunlocked and share them there. healthunlocked.com/thyroiduk

Medichecks thyroid page - medichecks.com/collections/thyroid/

I can go to the gym but its massive effort but once I'm there I can go on the cross trainer say for 15 minutes pushing myself.

I dont have worse days after a busy or active day. Fibro was mentioned by a neurologist but that definitely does fit my profile.

I could walk around London all day ( huffing and puffing) but my arms burn putting out the washing

Sorry fibro does not fit.

I could sleep for ten hours go go straight back to sleep. I have apnea and on cpap but that took five years + and a outside sleep clinic for ironically insomnia to diagnose

could it be a type of migraine.
i described my symptoms to someone and she said that was a type of migraine.
i had just thought it was one of my heads , as i called it. i thought migraine would be much more severe pain, and nausea, which i don't have.
it is relieved somewhat by a pain extra tablet, which is a mixture of aspirin/paracetamol/caffeine in one tablet. which is what made me wonder, about yours.

I was diagnosed with a prolactinoma at 24. It is a benign tumour in the pituitary that over excreted prolactin. However , it also knocks all endocrine function slightly out of balance. My symptoms started with generalised lethargy and exhaustion, often felt like I had mild flu. Eventually my periods stopped and I just couldn’t imagine feeling the same way for the rest of my life.
I had seen the GP multiple times but it was a young GP who was on the ball and looked outside of the box.
Hormone imbalance can cause all sorts of symptoms. The problem is that they fluctuate throughout the day,week & month. You need to see a very clever endocrinologist who can accurately monitor and interpret results.
I now take aromatase inhibitors ( post breast cancer) which reduce eostrogen to virtually zero. I actually feel fine but it causes moderate to severe muscle and bone pain. I am learning to live with it so that I can live essentially.

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.

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.

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.

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

Apologies if this has already been mentioned but consider para thyroid

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

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?

@TheGlitterati my serum calcium is in normal range 2.43

@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)

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

@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.

@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.

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

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

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

@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!

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

i am completely cured. Life is good again 😊

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