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taro93814 taro93814

Extreme fatigue, weakness, exhausted and don't know why

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

21 Replies

  • kenzii92818 kenzii92818 taro93814

    What tests have come back normal..

    • taro93814 taro93814 kenzii92818

      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 kenzii92818 taro93814

      Ok, have you been losing weight even if you eat normally.

      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.

    • taro93814 taro93814 kenzii92818

      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 kenzii92818 taro93814

      Thank you Taro,

      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 kenzii92818

      Forgot to say even if your adrenal from the scan come back normal, still ask for Cortisol levels to be checked, the scan will just show if the adrenals are damaged, but you can still have low Cortisol output.

    • taro93814 taro93814 kenzii92818

      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 Justhormonal taro93814

    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!!

    • taro93814 taro93814 Justhormonal

      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 fara35640 taro93814

    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 hoxo taro93814

    What was your B12 result? Even if in range low result can show abdeficiency that needs treating as you have symptoms of a deficiency? Read up on it as the B12 test and reference ranges are unreliable. B12 injections may help you. I self inject andnit did help me to feel much better.

    • taro93814 taro93814 hoxo

      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.

  • hoxo hoxo taro93814

    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 hope 40919 taro93814

    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. 

  • hope 40919 hope 40919 taro93814

    Sorry my last reply got sent before I finished. In short I completely changed my diet around to plant based. I felt stronger and felt an increase in clarity. I no longer have Addisons and my doctor attributes it to my clean healthy diet. I was told I would have this disease the rest of my life. What most people do not realize is that meat and dairy is extremely unhealthy and unnatural to the human body, we are naturally meant to eat plant based foods. Doctors are taught to hand out prescriptions and given about an 8 hour dietary mandatatory class before getting their degree. If anyone has any questions I would be happy to elaborate . Please know their is hope and I'am living proof of that.

  • melissa92945 melissa92945 taro93814

    Hello reaching out to you because I can relate to some of your symptoms. lightheaded dizzy nauseous unable to sleep well heart palpitations blurry vision lacking mental clarity and fatigued random high blood pressure. After an ER visit and GP visit and blood work Vitamin D came back as low (21). I have since been taking about 10,000 iui in drop form daily. I have felt extremely better but still have off days. How are you Feeling ?

    • taro93814 taro93814 melissa92945

      Hi Melissa,

      I am doing much better after endless testing from specialist after specialists. A doctor with some sense tested my b6 levels. It turns out that I have b6 toxicity from only taking a multivitamin. My levels were 47 (3.9-30.9). I stopped my vitamin and my symptoms started to lift.

      It is crazy and I am dumbfounded. I learned that in other countries the upper limit is 10mg but not in the US, it is 100mg. I was only taking 25mg in a multivitamin.

      It takes 15-30 days to get it out of the blood serum and 6 months to a year for the nerves to heal and symptoms to subside.

      Please have your b6 levels tested just to be safe. My heart palpitations, irregular heartbeat, random blood sugar spikes, numbness, muscle weakness, dizziness, brain fog, erratic blood sugar, and severe fatigue has improved.

      Praise the Lord for allowing me to finally find the root cause. Now I can start healing. I thought this was going to be a life sentence for me. I am just relieved.

      Take care

    • Roddy999 Roddy999 taro93814

      Great news!

      And that is a message to all those people who wanted you to take even more vitamins. Google "vitaminosis" - small amounts good, large amounts poisonuous.

      B12 by injection is only needed if you have pernicious anaemia [lacking the "intrinsic factor" needed to absorb oral B12]. Most healthy diets contain enough B complex - IMO sale of  multivitamins without a prescription should be banned! For those who feel they have to have something, take a homeopathy "remedy" - it's only water so it won't do you any harm.

    • hoxo hoxo Roddy999

      Hi this is not correct. There are several causes for vitamin B12 deficiency that may need levels correcting by administering B12 injections, not just autoimmune pernicious anemia.

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