Diagnosis help - tired/headaches etc

Other conditions
1

I’ve been ill for literally years. First went to the GP three years ago with excessive tiredness. Have had all blood tests going eg thyroid, diabetes, iron, vitamins and all fine. I have coeliac disease but on gluten free diet and my antibody levels are normal.

I am on a low dose of Venlafaxine (antidepressant) which I have been on for 11 years for ocd (under control for 4 yrs) and have been reducing over the last 18mths but to no ease of physical symptoms which are:

Excessive daytime sleepiness (always tired in mornings, sleep till lunchtime almost every weekend, only fully awake in evenings, used to fall asleep every morning at work, now work afternoons only)

Frequent headaches (worse in mornings, always there on menstruation times)

Shakiness/feel faint during exertion (eg cleaning, walking to shop; usually happens in afternoon)

Night time urination (once every night, sometimes twice)

Occasional heart palpitations

Occasional nausea/retching

Ill if I drink even a small amount of alcohol

Sudden waking repeatedly out of breath when falling asleep (drs don’t think it’s sleep apnea cos i wake myself)

Mood swings/irritability/crying fits

Find that I'm forgetting words that I'm trying to say

Drs seem unconcerned so I'm throwing it to the internet. Any help diagnostic wise?

2

I am so sorry, I can honestly say I don't know. But I wish you all the best in finding out.

3

Sorry to hear that you are feeling so awful. 

You mention several tests, but you do not say that you have been tested for vitamin D deficiency. 

I have had symptoms very similar to yours for the past 6 years. I was misdiagnosed with fibromyalgia. Like you, I am often tearful and have terrible brain fog. Finally, two months ago a new GP tested me for vitamin D and I was severerly deficient and suffering from osteomalacia (adult rickets). The major symptoms of osteomalacia are severe fatigue, bone and joint pain/aches and muscle weakness. 

Why not ask your GP for a blood test to check your vitamin D levels. You have nothing to lose, and the good news is that it can be reversed. Thousands of people are being diagnosed with illnesses resulting from vitamin D deficiency at the moment. I would suggest asking for a blood test ASAP and taking it from there. 

All the best. 

4

Thanks for replying. I'll double check but I'm almost certain I've had vitamin D test already as they had to check my vitamin levels were back up due to my having coeliac disease

5

Some people always suffer malabsorption after coeliac disease, as the gut does not regenerate fully in at lest 40% of people even after gluten avoidance. That's enough to make anyone fatigued.

I would still go for the viamin D option as it is at least an easy one in terms of a concrete test. Beyond that, you have to be tough and insist on further investigation - while avoiding being written off as depressed. Good luck! 

6

My gastroenterologist has confirmed symptoms are not as a result of coeliac disease.

Yes GPs do like to suggest depression or anxiety rather than investigate further. The more you tell them how badly it affects your well being the more they dismiss it as depression!

7

I have had a lot of your symptoms for 3 years since giving birth. I have been to the doctors constantly to be told there is nothing wrong with me and blood tests are normalbaoart from vitamin D which i have been treated for and finished treatment but yet symptoms still remain

Just wanted to say I'm in the same position as you with no diagnoses and it's so frustrating!

8

That's interesting. Can you say a little more about your vit D treattment - dosage and length of treatment?  We seem to be very short of people who have actually been through the treatment and then report back on how they got on. Appreciate your input.

All best wishes.

:-)

9

I was diagnosed 18 months ago with B12 deficiency, and your symptoms are the same as what mine where! 

you say you have had all blood tests done including vitamin profile, it is possible that your B12 while being "in range" is actually too low! Your symptoms are classic for B12 deficiency. There are a number of groups on facebook that can help you interpret your blood test results and help you convince your gp for more help should you need it. 

You need to get a print out of all your latest blood test results, you can just normally ask your GP receptionist for these, and then go find one of the groups.

Good luck x

10

My b12 levels were actually above the normal range on at least two tests so it's not that (but thanks for replying!)