Extreme fatigue, weakness, exhausted and don't know why
Posted , 22 users are following.
I am suffering from extreme fatigue and exhaustion and every test is coming back negative. Except for vitamin d deficiency. Vitamin d is just a missing part to my symptoms. I am worried that it's my adrenals and maybe thyroid. I finally got my doctor to refer me to an endo.
Still waiting for approval from my insurance. I was wondering if anyone with adrenal problems have similar symptoms as mine.
I awake very tired in the mornings unreplenished from sleep and I am very hungry, I have to eat something. I have to eat every 3 hours or I get weak.
My fatigue is physical and some what brain fog. I can't function normally any more on a daily basis. Doing simple chores exhaust me. Some days I am unable to do anything not because I am lazy but I don't have the energy. It feels like I am recovering from running a marathon.
My fatigue started in October with a stressful job and doing too much. The fatigue just started getting worser as time went on. The lighthead, head pressure, irregular hearbeat, palpitations, irregular highblood pressure spikes, neck and shoulder pain and hands and legs get heavy at night, fingers sometimes get numb.
I don't get replenish from eating or sleeping. I don't understand it. What is wrong with my body? I've never been this sick in my life. Always been healthy except for doing a little bit more than I should.
Some days I feel like this his how it feels like to slowly die. Wondering if my body will eventually shut down. It's been 7 months just sitting and waiting for more tests and suffering.
Any insight or advice on what test to request to take from endo and questions to ask.
Thank you
1 like, 38 replies
kenzii92818 LyLy
Edited
LyLy kenzii92818
Posted
Vitamin b12, folate, iron, ferritin count, mono, Antin unclear antibodies (ANA), rheumatoid factor, MRI, Aldolase, total CK, C- reactive protein, sedimentation rate, and TSH. All came back normal but vitamin D.
I'm waiting to get a echocardiogram, been having irregular heartbeat, random highblood pressure spikes, fast resting heart rate and alot of headpressure. I'm already fatigue but when my heart acts up I get extra weak and lightheaded.
Waiting also to get referred to an endo to rule out others things.
kenzii92818 LyLy
Posted
Have you increased thirst and/or urinating more or been checked for Diabeties,
Have you had your cortisol output checked
The list could go on, however seeing that you had an MRI scan I think this would have picked up anything abnormal, so wait to see what the endo says, just ask would the MRI scan have picked any adrenal problems, relating to low cortisol, as you said you are always tired in the mornings and dont feel refreshed after a nights sleep.
I am sure it would have but hey it is still worth asking the question to rule that one out.
Once the echolcardiogram is done and hopefully all is ok with that. Then work from there and hopefully after seeing the endo he/she may be able to look at everything you have had checked already and go from there.
Unfortunately it is one step at a time to rule things out, even though that is the worst part as it is always a waiting game, and maybehe/she will do more tests . hopefully you will get the answers you need to sort this out for you.
LyLy kenzii92818
Edited
Thank you so much for replying and giving me such sound advice. I will definitely ask about the MRI picking anything abnormal on my adrenals.
I'm just learning about the health care system and seeing how frustrating it can be. I've never been this sick in my life. Always taken good care of myself to stay healthy. Only time I've been to the doctors is only once a year for a physical.
First time seeing so many specialist and it can get very overwhelming not knowing what to ask or advocate for myself, just relying on doctors expertise.
It will be a long road ahead but I'm very hopeful. God is good everything happens for a reason. Thank you again. Your words gave me much comfort and direction for the next steps.
Have a blessed day! Take care.
kenzii92818 LyLy
Posted
When problems arise in health it is very daunting especially when you feel so bad and still have no answers. So hang in there and I hope you get the answers very soon as to why you are feeling so bad. And you get the help you need to make you better, so that you can get on with your life GOOD LUCK , and when you have the answers please drop me a line on here. And try not to worry (easier said than done I know).
kenzii92818
Posted
LyLy kenzii92818
Posted
Hi Kenzii,
Here is an update, my ecocardiogram came back normal. He diagnosed me with syncope for on and off dizzy spells that I get from time. The problem is that the pictures weren't very clear. He said because I was skinny and didn't have much fat. Not how reassuring that is at this point.
I went to the endocrinologist and test were all normal:
Cortisol baseline: 14.9 ug/dl
Cortisol 30 min:25.3 ug/dl
Cortisol 60 min:28.2 ug/do
T4, free :.9ng/dl. (.7-1.5 ng/dl)
Tsh: .968 iu/ml. (.450-5.100 iu/ml)
It still doesn't explain my fatigue and weakness. Next step is go back to my Gp and see what to do next. I'm starting to think maybe the vitamin d deficiency might be the root cause after all. I'll probably work on raising my levels and just have to wait and see.
Hope you are doing well, take care
Justhormonal LyLy
Posted
Ugh that sounds a bit like me. They diagnosed low B12 a year ago and the B12 shots help but don't get me back to "normal." Women's doctor did some hormone tests and I'm not in early menopause (turning 40 this year) but some hormone levels are quite low so they sent me for the cortisol stimulation test. It has come back borderline but just on the "ok" side - they did it 3 times to see if it changed - so they are not treating anything. Ok great, so this is how I'm going to feel the rest of my life?? Brain fog and everything. The only other thing it might be, in both my case and maybe yours from some of your symptoms, is anxiety and depression. I had anxiety 6-7 years ago and the symptoms are not the same, but I can't quite rule it out. I may go back to my GP and request a trial of anxiety meds to see if it helps. For you, I hope they figure out something with your endo and that you can get the testing done SOON to get some answers!!
LyLy Justhormonal
Posted
Thank you Justhormonal, I'm thinking it's my hormones, adrenals or thyroid and hopefully the endo will have some answers for me. Im hoping this is not a life sentence either.
Feeling like this every single day at 36 years old is very depressing especially having kids to take care of.
BTW have you considered supplementing with magnesium? I've started on 300mg now increased to 400mg. It's helped a little bit with my energy, headaches and brain fog. Better than nothing at this point.
I hope you get better soon.
I hope you start feeling better soon.
fara35640 LyLy
Posted
You poor thing. I feel the same even though I am on the Hydrocortisone. I know what it's like to feel exhausted all the time. You must ring your doctor and make an emergency appointment and this doesn't sound good.
hoxo LyLy
Posted
LyLy hoxo
Posted
I had my b12 tested in November and the doctor said it was fine. I should have asked for the range number. I will probably ask my new GP to test it again just to make sure I'm in optimal levels.
I do take a multivitamin and magnesium that has vitamin b12 in it. But thank you. I will look up b12 deficiency and get it checked again.
LyLy hoxo
Posted
I just got my b12 checked and it is at 528 (247-911) my doctor said it is ok. Should I supplement b12 to raise it higher?
hoxo LyLy
Posted
If you've been taking a supplement it could have raised your B12. It won't harm to take a high dose supplement and see if it helps. I was taking 5000 mcg sublingual B12 which helped a bit before I started on injections. B12 is safe to take in higher doses. A levels above 500 does indicate it is OK but can be skewed if you've been taking supplements already. It's horrible feeling so tired and not knowing why.
hope_40919 LyLy
Edited
Hello, I'm posting on this forum tonight in the hopes it will help and also inspire hope. I was diagnosed with Addisons at 35 years old. I nearly died before my diagnosis as I was sent from Doctor to Doctor, no one knew what was wrong with me. I lost a tone of weight, I was dizzy when I stood and it got worse as time went on. Once I was officially diagnosed I felt like I regained my life back after a year of absolutely no appetite I was ravenous after just my first dosage of cortisone. Let me get to the most important part. After having Addisons for 6 years, I'am now free of the disease. In the summer of 2016 I decided to give up all meat with the exception of fish.