Discussions By Condition: I cannot get a diagnosis.

Lots of symptoms - No real Diagnosis for years

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: AmandaAtl
  • May 18, 2011
  • 09:56 PM

I'm sure my story is like many others. I am a 39 yo female. I have had fatigue issues for years and I was put on many different antidepressants over the last 10 years now. I was on 4 different ones about a year ago but was unemployed for 6 months and went down to 1(Lexapro) b/c of cost. Psychologist sent me to the Doctor to determine if there is another cause of fatigue besides depression. So I have been getting lots of Blood Work. Also sleep study was done and I was diagnosed with Sleep Apnea and given a CPAP.... which I haven't been using consistency b/c of congestion issues.

I will give you my latest blood test results that my doctor gave me over the phone plus my symptoms.

- 80 lb weight gain over last 18 years
- Extreme fatigue
- Chest pain (had episode about 1 month ago of BPM of 173/100 and was told i have angina)
- High Blood Pressure
- Borderline Diabetic
- High Cholesterol 214
Trig 173
Ldl 138
Hdl 41
- Liver emzymes ok (previous test they were elevated)
- Esr high 30s
- Infection (ear)
- Ana negative
- Folic acid normal
- Vit B12 309 low
- Thyroid hyper 1.14
- Vit D 5 very low
- my leg some times jumps sporadically
- usually feel hot when others don't
- nails very thin
- VERY Frequent urination
- signs of arthritis (testing for rheumatoid)

Generally I feel horrible pretty much all the time!

I am supposed to get a PCOS test,see cardiologist (heart stress test), see an endocrinologist, and mammogram.

The medicine I have been put on is
* Simvastatin 20 mg
* Antiinflamatory
* apo-hydro 25 mg
* aspirin
* Enalapril maleate 5 mg
* Lexapro 10 mg
* Fish oil
* Multivitamin
* metFormin HCL 500 mg (2 times a day)
* Sulfamethoxazole-TMP DS
* very bad bag under my eyes and swollen hands

Doctor is calling in more prescriptions today. (i think Vitamin D). I have never taken so many pills at once. I'm going to have to get one of those big pill boxes :(

I know that there are probably a few issues going on but want to make sure there is not a major issue that is being missed. As a side note I want to get pregnant and my health is such a mess right now. Also keep in mind that 2 years ago my only issue was being overweight and fatigue.

Right now it seems almost everything is blamed on me being overweight which could be true and I know I need to lose weight which has been very difficult for me. I eat organic food / natural as much as possible. I have tried only eating 1000 calories a day at one point and still didn't lose weight. I was very thin until my early 20s (105 lbs 5'2")

Well I hope some has some insight and I appreciate any feedback/help.

Thanks for reading!
Amanda

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11 Replies:

  • Also I should add that I have been diagnosed with several "infections" over the last few months. I have been on antibiotics several times and also steroids. Very sickly!!!
    AmandaAtl 8 Replies Flag this Response
  • When I first started reading your post, I was convinced you had to have hypothyroidism. (There have been known links between that and sleep apnea, diabetes, and rheumatoid arthritis). Also, hypothyroidism causes fatigue, high cholesterol and weight gain. However, it looks like your thyroid levels were opposite of that. And your symptoms of feeling hot and having high blood pressure are hyperthyroid symptoms (though that can cause fatigue and even weight gain in some). Is it possible you have a condition affecting your thyroid which makes it fluctuate back and forth, such as Hashimotos? I don't know, but if I were you, I would be focused on looking at adrenal and thyroid function. Good luck and I hope you find out what is causing you so much grief!
    Anonymous 42789 Replies Flag this Response
  • I'm surprised that no one has any suggestions... I've also added Biotin 2.5 mg per dayand MethylCobalamin vit b-12 to my daily medicines.Had to go buy a large pill box to help me organize my medicine. I'm looking for a good website with mobile app (android) to help manage my meds and health.Thanks!Amanda
    AmandaAtl 8 Replies Flag this Response
  • I am sorry for your struggle. Have you considered Lyme disease? My husband has had it for years, and the symptoms are all over the place. Took forever to get a diagnosis due to the prevalence of false negative blood tests, and the fact that multiple systems are affected and seem unrelated. Long term antibiotics seem to be the preferred treatment route. Good luck!
    Anonymous 42789 Replies Flag this Response
  • You already have so many different issues already diagnosed and not currently fixed that it isnt wise to suggest you have other issues on top as what you have may be the cause of the symptoms you have. Diabetes causes fatigue. Sleep apnea causes fatigue. Being overweight causes fatigue. B12 deficiency causes fatigue. (I cant remember if D deficiency can or not). B12 deficiency can cause LOTS of symptoms including neurological issues (it may be the cause of your leg jumps). Thyriod issues too cause a lot of symptoms. High BP and the borderline diabetes may be due to your weight. Make sure you have your B12 and your D retested in a few months to see if your levels are better (often one needs higher doses of supplements to get them right. I myself are on 4000 IU per day which is double the normal supplement dose as I went even more deficient on normal supplement dosage). .... Im glad the doctor is looking into PCOS seeing you are overweight with hyper thyriod (which of cause usually causes weight loss). I myself have PCOS (along with having prediabetes.. hyperinsulinemia) and Im not joking when I say this but just eatting a banana will make me put on weight. Ive managed to loose weight by cutting out nearly all my carbs.. I keep my carb level down to 17g per day or less.. (similar to Atkins diet). With your own near diabetic condition switching to such a diet would probably help your case a lot. (cutting calories didnt do much for me at all due to how my body reacts to carbs). I limit myself to only one piece per toast per day if that and dont eat cereal, rice, grains etc (as that is all carbs). I have no sugar in my diet at all. I dont eat potatoes or bananas due to their carbs. (I use xylitol which is a natural sweeter which tastes like sugar). Milk has carbs too so I restrict that to 1-2 cups all up per day (minus a cup if i have yogurt). Basically I live off of veg and meat. Im allowed to have one small piece of fruit per day (fruit has carbs) My specialist (which deals with my prediabetic state and sent me to a nutritionist for it) has me eatting meat THREE times daily as that helps with balance the insulin levels. (people get hyperinsulinemia before they become diabetic). This prediabetic state also gave me very high cholestrol levels. (I'd previously been put on low cholestrol diets but they'd failed to drop my levels, the insulin issue was why so Im now off the low cholestrol diet and now on the low carb diet). I'll give you an example of my low carb diet. Breakfast .. Nutritionist and my specialist told me to have 2 eggs (as Im not to worry about my old cholestrol diet as getting my insulin down will help solve the cholestrol issues). I have my eggs usually hard boiled. I have a grilled piece of steak with that if Im still hungry. or if i want a bigger breakfast.. I fry up mince, onion, mushroom, capsicum with some herbs and spices Snack.. cheese.. or non flavoured (as fruit has carbs) yougurt. I sweeten it with the xylitol Lunch .. meat and salad Snack... small piece of fruit Dinner..meat and low carb veg (so i avoid root veg like carrots, potatoes, pumpkin also sweetcorn is high in carbs) low carb veg.. cauliflower, brocolli, which I like to sprinkle with grated cheese along with some capsicum Snack.. This is where I have my once per day serving from the cereal and bread food group. Piece of bread with cheese on it or a little packet of dried biscuits and cheese which are worth in carbs about half a piece of bread...... Best luck.. B12 is also in meat so the above diet would be great for that issue for you too.
    taniaaust1 2267 Replies Flag this Response
  • taniaaust1, Thank you soooo much for your reply. I do need to meet with a nutritionist to help figure out the best diet for me. I will look into what you are suggesting. I'm sure cutting down my carb could help. I was seeing a Holistic type nutritionist and was doing Macrobiotics. I lost 25 pounds in 3 months. I planned to make it a lifestyle change and not a "diet" per se but because of having a move back to the U.S. and living with family for a while I went back to the way I was eating before. I never felt better when I was eating following the Macrobiotics principles. I wasn't eating any meat and a lot of brown rice at that time.I have to figure out how to get healthier. I want to have a baby and really shouldn't at this point because of my health.BTW The my D prescription is D2 1.25 mg (50,000 unit) 1 per week.Thanks again!
    AmandaAtl 8 Replies Flag this Response
  • I am sorry for your struggle. Have you considered Lyme disease? My husband has had it for years, and the symptoms are all over the place. Took forever to get a diagnosis due to the prevalence of false negative blood tests, and the fact that multiple systems are affected and seem unrelated. Long term antibiotics seem to be the preferred treatment route. Good luck!I think they did test me for Lyme Disease a few months ago but I will double check. Pretty much every time I go to the doctor lately they have prescribed antibiotics which I know shouldn't be over used.
    AmandaAtl 8 Replies Flag this Response
  • When I first started reading your post, I was convinced you had to have hypothyroidism. (There have been known links between that and sleep apnea, diabetes, and rheumatoid arthritis). Also, hypothyroidism causes fatigue, high cholesterol and weight gain. However, it looks like your thyroid levels were opposite of that. And your symptoms of feeling hot and having high blood pressure are hyperthyroid symptoms (though that can cause fatigue and even weight gain in some). Is it possible you have a condition affecting your thyroid which makes it fluctuate back and forth, such as Hashimotos? I don't know, but if I were you, I would be focused on looking at adrenal and thyroid function. Good luck and I hope you find out what is causing you so much grief!Thanks for replying! I have had my thyroid tested so many times over the last 8 years... but they were always normal until now. I was so surprised it was Hypo and not Hyper. Hypo is supposed to cause weight loss.Doctors kept thinking there was something going on with my thyroid. So I will definitely look into Hashimotos. Thanks again!
    AmandaAtl 8 Replies Flag this Response
  • Have your cortisol am levels ever been checked? Try looking into Cushings Syndrome it is caused by high cortisol levels. They can do an ATCH Suppression Test to find out.Signs and symptoms of Cushing’s syndrome vary, but most people with the disorder have upper body obesity, a rounded face, increased fat around the neck, and relatively slender arms and legs. Children tend to be obese with slowed growth rates. Other signs appear in the skin, which becomes fragile and thin, bruises easily, and heals poorly. Purple or pink stretch marks may appear on the abdomen, thighs, buttocks, arms, and breasts. The bones are weakened, and routine activities such as bending, lifting, or rising from a chair may lead to backaches and rib or spinal column fractures. Women with Cushing’s syndrome usually have excess hair growth on their face, neck, chest, abdomen, and thighs. Their menstrual periods may become irregular or stop. Men may have decreased fertility with diminished or absent desire for sex and, sometimes, erectile dysfunction. Other common signs and symptoms include severe fatigueweak muscleshigh blood pressurehigh blood glucoseincreased thirst and urinationirritability, anxiety, or depressiona fatty hump between the shoulders
    amlich 2 Replies Flag this Response
  • I am sorry for your struggle. Have you considered Lyme disease? My husband has had it for years, and the symptoms are all over the place. Took forever to get a diagnosis due to the prevalence of false negative blood tests, and the fact that multiple systems are affected and seem unrelated. Long term antibiotics seem to be the preferred treatment route. Good luck!Seems like they did test me for that but I will ask next time I go to the doctor. I'm gong to the Endicrinologist and Cardiologist next.Amanda
    AmandaAtl 8 Replies Flag this Response
  • amlich, Thanks for the info! I will definitely look into Cushings Syndrome and ask for the tests because I do have a lot of the symptoms you listed...severe fatigueweak muscleshigh blood pressurehigh blood glucoseincreased thirst and urinationirritability, anxiety, or depressiona fatty hump between the shouldersAlso I do carry my weight in my upper body.Thanks again!Amanda
    AmandaAtl 8 Replies Flag this Response
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