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d me a referral upon request. I have so many other symptoms, severe occipital pain which mostly pops up sudden and strong, generalized nerve pain accompanied by unbearable itching at times, fatigue, brain fog that feels like dementia and many more

June 29
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MyLupusTeam

It sounds like you're dealing with a really overwhelming combination of symptoms — and you're definitely not alone in that. Many MyLupusTeam members report a wide range of neurological symptoms connected to lupus, including severe headaches, nerve pain, fatigue, and brain fog.

The severe occipital pain you're describing Show Full Answer

It sounds like you're dealing with a really overwhelming combination of symptoms — and you're definitely not alone in that. Many MyLupusTeam members report a wide range of neurological symptoms connected to lupus, including severe headaches, nerve pain, fatigue, and brain fog.

The severe occipital pain you're describing could be related to occipital neuralgia, which is sometimes associated with lupus. Lupus can release abnormal antibodies that attack nerves and blood vessels, causing inflammation that leads to this kind of intense, sudden head pain. The good news is that getting lupus well-managed can sometimes reduce these neurological symptoms. Here are some important steps to consider:

- Talk to your rheumatologist about all your symptoms, including the acoustic hallucinations and occipital pain
- Ask for a neurology referral if you haven't already — a neurologist and rheumatologist working together is often the best approach
- Don't downplay any symptom — even ones that seem unrelated can be connected to lupus activity

Getting your lupus under better control through your treatment plan may help reduce some of what you're experiencing. Please don't wait to bring all of this up with your care team. 💙

June 29
A MyLupusTeam Member

I'm taking 100 levothyroxine (T4) and 25mcg liothyronine (T3). I split both pills and take both day and night. My body can't convert T4 to T3, so I need liothyronine. My doctor is planning to up the T3 further gradually, because all my tests show the T4 really isn't being converted, but you still need some T4 in your system for other processes. If you take any T3 med, you should take them twice a day, because of it's shorter halflife. I split the T4 pill too, just because the 100 hitting at once possibly caused the heartbeat noise in my right ear. Since, I split it up too, the noise went away. Prior to all this taking two meds, I was on one medication that combined both T4 and T3, and I took it twice a day (Armour Thyroid or NP Thyroid). But, my insurance won't pay for either now, after 20 years doing well on these meds. It went from $20 for a prescription to $170. So now we are trying to get the right mix with two different meds.

June 30 (edited)
A MyLupusTeam Member

Thanks K for the information on your T4 and T3. My GP always read my bloodwork and over the years has said my thyroid was out of wack and would up the dose or lower it. But nothing about my T3. as it seems to stay pretty stationary in the guidelines. Sorry that your insurance has raised your prescription price. Good luck with your doctor inn finding the right mix

July 1
A MyLupusTeam Member

K, so you have hypothyroidism? That is what I have and I also take Levothyroxine. Is the T3 also for your hypothyroidism? I only take my thyroid meds first thing in the morning, never several times a day! What is your dosage of your Levothyroxine? It seems my dosage has changed a few times over the years due to my thyroid activity.

June 30
A MyLupusTeam Member

I had an odd symptom the other day too. I could hear my heart in my right ear. I assumed it was due to a medication change, and spread the extra T4 (levothyroxine) out with the T3 liothyronine, I was already taking several times a day, and the weird beating/wushing noise subsided. My body can't turn T4 into T3, so possibly the large dose of T4 just set off alarms sitting there in my system.

I certainly am out of breath constantly too. We are planning to move to a one story home soon, and we are hoping this will help.

June 29

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