Headaches and Thyroid Disorder - Anyone have bad sinus headaches and feel like your brain is expanding?

[Kim327]

Hi!

Has anyone else experienced bad headaches, sinus and neck pain due to thyroid autoimmune disorder? Seems to happen when I am hyper because I remember before being diagnosed having headaches all the time

I have Graves Disease and on Methimazole now only 2.5 mg 5 days a week. Going for blood test tomorrow. Started at 10mg a day when diagnosed last February. Starter hyper then went hypo now I feel I’m hyper again. I’ve had so many ailments I’ve seen 10 Doctors, 2 trips to the ER, an MRI and 2 CT scans. Nothing but Graves Disease they tell me (besides a bad root canal that got infected and had to be redone!). These last 8 months have been torture with the ups and downs.

My one ear clogs and they said I have sinusitis but I’ve been on string antibiotics for over a week. Still having the pain. I can actually hear my the nerves moving in my head when I move it and feel like my brain is swelling. I was in the ER 3 days ago and had a head CT scan with nothing there. They took my TSH and I was 1.14, My T3 91.9 and T4 7.68. Going tomorrow for my blood tests for my Endocrinologist to test antibodies and vitamins.

I’ve been to two Endo’s, Cardiologist, ENT, Internist, Gastroenterologist, Gynecologists, Dentist, Dermatologist, and an my eye doctor to get checked. My next stop is an Neurologist!

If anyone has experienced headaches and have any tips I would be extremely grateful!!!

Thank you!

[Alexkjones]

Hi. I also have graves. 5 years in. I take a week of 5mg of carbo and then a week of 2.5mg carbo alternating which keeps me at a tsh of about 1.3. This seems a good place for me with less symptoms. I do get headaches from time to time. Either around period or if my tsh goes up like about tsh 2. Check your blood pressure as this can cause headaches. Loosing weight can help with reducing headaches too. How old are you ? Alex

[Alexkjones in reply to Alexkjones]

Drink plenty of water too.

[Kim327 in reply to Alexkjones]

Hi Alex,

Thanks for your reply I am a 48 year old female. I drink water all day long and losing weight because I eat fruit, veggies and lean meats. I avoid gluten, soy and processed foods. Never ate so perfect in my life!

Thanks for advice and hope you keep doing well!!!

Best, Kim

[Alexkjones in reply to Kim327]

The menopause or peri menopause can also cause the headaches. I’m 44 and I put the headaches down to that sometimes. It’s hard to differentiate what’s graves and what’s menopause really. Good luck to you too.

[Kim327 in reply to Alexkjones]

Thank you! Good luck to you as well!!!

[Thereisnoplaceforus]

I was diagnosed with hyperthyroidism (Graves) in 2008. Took methimazole and beta blocker for a year and one day my whole body started shaking uncontrollably. I remember loosing all my strenght so much so that I couldn't even stand for few seconds. Called the doctor and I was instructed to stop taking methimazole immediately. Next day doc performed blood tests and told me I was hypo. I was advised to stop the meds and see what my thyroid does next. I have had normal blood tests since then but I have been to ER countless times due to my heart rate. My heart kept on beating really fast at random times for no apparent reason even though my Graves disease was in remission as per all the qualified doctors. Have had severe pain on the right side of my neck for two to three years which has now switched to the left side of the neck for couple of years now. Been told I have nothing to worry about but something is not right. Over the years I have felt this disease has affected my whole body specially my heart and now it feels as if my heart is beating slowly or skipping beats. I feel as if my heart will just stop beating for good. Have done echo/holter/EKG which has all came out fine as per the doctors. Had severe stomach pain lower right side of abdomen for which two CT scans done over several years which came out inconclusive. Continuing lots of trips to the ER... Fighting to survive and for a proper diagnosis while my body/strength and resources are all being dragged down the drain.

[Kim327 in reply to Thereisnoplaceforus]

So sorry you are dealing with so much too! I hope you can get some answer to feeling better. I keep seeing new doctors when I feel bad and I know if I keep trying I will get back to living l! I hope you do the same

Yesterday went to a Neurologist and told I have a pinch nerve causing all my left side issues. Gave me shots in my neck that helped. This disease is crazy. Affects mind and body. I get pains in random places and drives me crazy. My blood tests are normal now I believe just waiting for my Endo to tell me what’s next on meds. I’ve just had bad luck with sinusitis, pinch nerves and herniated disc and a bad root canal causing a severe tooth infection! It’s been a nightmare of pain.

I also had EKG and doing stress test the end of this month. All so far so good. My cardiologist even had me do a ct scan on my chest. My heart beats fast time to time now too. Hate it! I don’t want to go back on beta Blockers they made me depressed. My blood pressure has been high every doctors appointment. I was getting regular periods but now they stopped. Not sure when I’m going to go through menopause. My gynecologist said I wasn’t menopausal yet a few months ago. I am peri menopausal. Whatever that means!

Keep working on seeing new doctors that will take the time to help and understand. I hope you eat well and avoid those triggers like Gkuten, soy and sodium. I also drink water all day long.

I hope you get to feeling better soon and find the relief you need so desperately! You’re in my prayers!!!

Best,

Kim

[thyr01d]

If your T3 is really 91 I think that might be the problem, you haven't shown the range but in the labs where mine is tested that would be way too high. Also my endo told me I might have headaches taking T3 and just to request a prescription for painkillers, might that be the cause?

[helvella Administrator Thyroid UK in reply to thyr01d]

You might be mis-judging that. I suspect that it is Total T3 and measured in nanograms per decilitre. A possible range is:

Total triiodothyronine 60 to 175 ng/dL.

[Kim327 in reply to helvella]

Yes, normal T3 is listed as 80-200 ng/dL and I’m 91.9

[thyr01d in reply to helvella]

Thanks Helvella for the correction, I was misinterpreting.

[Kim327 in reply to thyr01d]

Hi Thanks for your reply!

My levels show my TSH T3 and T4 as normal but just went yesterday for updates tests for my ENDO and will know for sure this week where I am.

Also, Yesterday went to a Neurologist and he told I have a pinch nerve causing all my left side issues face arm and neck issues. Gave me shots in my neck that helped and 800 Mg of ibuprofen to take 2xs a day. I did fall last year and hit my head hard which may have caused the nerve damages. Between my tooth infection, sinusitis and pinch nerve all rolled up in one it has destroyed my head! I never knew a pinched nerve in your neck could affect your face and head like a sinus infection! I also have to do 4 weeks of physical therapy!

Drinking lots of water and trying to rest. Hard to do with little kids needing their Mom.

Thanks so much!

Kim

[thyr01d]

Oh, you have my sympathy, I had a trapped nerve once and hope never to have another. Mine was 'fixed' by a brilliant private physio, I still remember the instant relief as she gently took hold of my head, one hand either side and as she lifted said "Does that help?". For the first time in two years the pain was relieved, then I did the exercise she gave me and was soon out of pain. I hope you have as good an experience and no more infections!

[Kim327 in reply to thyr01d]

Thank you for that information and kind words! Glad you had someone help you with your pain. I’m starting physical therapy this week! Hopefully it will heal this horrible pain!

all the best to you!