Still not diagnosed, symptoms of anemia and breathless after basic activities - doctors don’t know what to do!

[droferwyziad]

Following on from my previous posts I’ve since had an ECG, Echocardiogram and a 48hr heart monitor which proved nothing. I’m still experiencing symptoms of anemia, and so took iron tablets myself to see if it helped but it made me feel even worse. Ive been put on propranolol and promethazine hydrochloride to help anxiety symptoms but these only stop my hand shakes and the feelings of sickness/lack of appetite I had. I still come over feeling dizzy (especially when standing) but the heart investigations came back as healthy (which I found hard to believe). I still can’t walk up the stairs or do simple activities without being completely breathless, and when Im 18 an ex-dancer and ex-gymnast I don’t think it’s due to just being unfit. The doctors can’t find anything and are sending me for neurology investigations in September i’m case it’s anxiety related but I honestly don’t know what it could be and I feel like I’m going to come out with no diagnosis at the end of it. Any suggestions for what I can ask the doctor next or if anyone’s experienced the same? Thanks.

[wobblybee Administrator Pioneer]

I’ve been misdiagnosed myself in the past, and it took many years before a correct diagnosis was given. I was very worried and anxious, because accruing symptoms didn’t match the misdiagnosis. In my case it was due to a rare disease, and stress made symptoms worse. It would be helpful for you to keep a diary of events when your symptoms were triggered, how long they lasted and if anything eased them. It’s likely you’ll be asked about your medical history, even when it’s in your notes. And, mention if any family members had any similar problems.... In the meantime try to avoid tinkering with OTC meds 🙂

[TaraJR]

Have you had thyroid tests done? If not, ask your dr to do TSH, T4, T3 and thyroid antibodies. tests. FULL thyroid tests, not just a TSH test which isn't good enough but they try to get away with just that one.I had symptoms like that when my thyroid was overactive and underactive. It can make you feel dreadful.

It can also make a lot of vitamins and minerals go low, which can also give awful symptoms eg Vitamin D, Vitamin B12, folate, ferritin.

When you have those results (always ask for a printed copy of your results, don't take 'normal' as an answer from a dr), post them on Thyroid UK section of Health Unlocked - you'll get excellent advice on there.

healthunlocked.com/thyroiduk

[SraB]

I had those symptoms. I was sent to internist and cardiologist, and I did a lyme test. I was thinking it was long covid. At the end it was anticonception pills.

[Indigo313]

I've had a lot of breathlessness and fatigue over the years. I never take the doctors iron now when low, only Iron bis-glycinate which is more easily tolerated (but tell your GP). Also after a while I realized the breathlessness happens when I eat too much corn/maize and gluten. So it could be some kind of food sensitivity. Just suggestions as I have had a hard time with breathlessness and I know its worrying and frustrating. Check out Anthony Williams (Medical Medium) if you want and only take what resonates with you. His podcasts have been very helpful for me.