hi everyone
Does anyone else with Graves or Hashimotos suffer with a background headache ?
I have had one for a long time and it seems to be intensifying. It impacts on my sense of self and my appetite for life and somehow ‘pushes me down’ reducing how much I can do and want to do.
Any shared experience would help me right now as I am feeling at my wits end
Yup. Lots of us have experienced that as a symptom pre-diagnosis and when we had/have suboptimal thyroid levels.
I’ve marveled before why headache isn’t on the usual list of symptoms we always read. It was one of my first and longest standing mysteries, until I was diagnosed.
It’s hard to find it in general internet searches but also periodically comes up on this board with posts like yours.
What are your actual thyroid and vitamin results
Exactly what medication and vitamin supplements are you currently taking
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and (if on levothyroxine last dose levothyroxine 24 hours before test )
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
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Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
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Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
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Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
THank you Slow Dragon
I will reply in properly this week as my question did not have much context.
I really appreciate your time and response
THANK YOU
If you are on too much Carbimazole and therefore have too low Ft3 or Ft4 you would effectively hypothyroid
headaches are very common hypothyroid symptom
good morning SlowDragon
All my thyroid hormones are in good range . I work with a FM practitioner and have supplemented with vitamins B12 Mag Zinc Phosphotidylcholine D3 Fish oils Turmeric (KappArrest very good anti inflammatory )and herbal mixes . I don’t take carbimazole since RFA on nodule in Jan 23.
The head pressure has been building in intensity for the past couple of years and I put my post on as I was feeling so isolated about it. I am currently trying a low histamine diet as I did a methylation test and some gaps in breakdown of histamine were shown.
It’s been a long journey since being diagnosed belatedly with Hashimotos in 2013 (previously adrenal collapse 2003) did lots of diet work MTFHR folate smoothies . I won’t bore you.
My gut feeling is that the headaches are AI related but I do worry about my brain and whether to have a CT scan .
Apologies you have had my whole story
So are you on any replacement thyroid hormones?
Have you had sleep apnea assessment?
No I'm not on medication as T4 is good. ( I do test privately as GP lab won't give T4 if TSH in range grrr)
I dont know anything about sleep apnea assessments.
Thanks again Slowdragon
So presumably you test TSH, Ft4 and Ft3
Sleep apnea and thyroid
nhs.uk/conditions/sleep-apn...
Check if you have sleep apnoea
Symptoms of sleep apnoea mainly happen while you sleep.
They include:
breathing stopping and starting
making gasping, snorting or choking noises
waking up a lot
loud snoring
During the day, you may also:
feel very tired
find it hard to concentrate
have mood swings
have a headache when you wake up
pubmed.ncbi.nlm.nih.gov/305...
Hello Slow Dragon
I looked up slepp apnea and it does not seem to reflect my symptoms apart from headache so I will not pursue this at the moment.
Currently going on Ametrypteline for relief and support for head pressure and MRI scan so got my plate full at the moment
best wishes and thank you for your kind attention and time
hello, I don’t know what brand of medication you are on, but when I was taking Teva for hypothyroidism and Hashis I had permanent headaches and head pain. On the advice of this wonderful forum I changed to Accord - none since! I am religious about only having Accord. I hope that helps, good luck
Yes, I do. It helped me to reduce dairy - I only use goat produce as a treat - and I think magnesium glycinate has helped too.
Hello Celticfiddler :
Are you still taking the Carbimazole -
Maybe your T3 level is now too low for you to function on and the AT drug needs titrating ?
Do you have any recent - TSH + T3 and T4 results and ranges -
Do you supplement to maintain your ferritin, folate, B12 and vitamin D and / or have any blood test results as these core strength vitamins and minerals - if non optimal - can compound your health further than necessary ?
I’ve suffered with headaches all my life - migraine and a condition called idiopathic intracranial hypertension (IIH). Currently my IIH is under control/no treatment or symptoms happening so my daily headache I now put down to suboptimal thyroid treatment. The headache you describe is exactly what I get. Trying to decipher the difference between headaches has become an art for me - I know when I’ve started a Migraine attack vs IIH vs “normal” everyday ick.
I’ve been working on my vitamins and am about to try NDT vs just T4 replacement. Hoping the daily headache and the fatigue (which triggers migraine) may improve on my new regimen.
thank you for your response ICT sound horrid I didn’t know about it . Was it diagnosed with an MRI ?
I’m currently following a 3 week low histamine diet see my post to Slowdragon if you’re interested! Headaches seems worse hence my initial post .
Thank you for your help
IIH is grim! Don’t wish it on anyone. For me, it was diagnosed via a routine eye test which referred me to hospital. As the pressure increases, it presses on the optic nerve which can be seen by optometrists and causes concern. MRI is used to rule out anything else so a clear MRI adds weight to an IIH diagnosis. IIH is treated by lumbar punctures so often part of the diagnosis is to complete an LP and see what pressure reading it shares. My first ever LP showed a pressure over 40 which is very very bad!
IIH was of interest to my endocrinologist as he’d seen an overlap with thyroid patients before which hasn’t ever been highlighted to me. I’m not suggesting you have this, but if you’ve got a routine eye test coming up you can ask your optician to check for it as it’s something they look for and can advise if a referral to the local hospital clinic for further/thorough checks is needed.
I wake with a headache almost every day. I also get very occasional migraines ( once or twice a year). I have Epilepsy & was referred to a headache nurse but all she could come up with was dehydration which I definitely don’t have. I’m following your post looking for answers myself. Hope you get some useful tips.
Thank you ! I too wake with this headache every day and it has been building up over the past 2 years or more . I can get on with my day and put it to the back of my mind but lately not !
I am currently trying a low histamine diet as my ability to breakdown histamine is slightly compromised . I will re post if anything significant takes place .
Nice to get your comment and to hear that I am not alone
Thank you
Interesting. Mine tends to slowly improve as the day goes on & like you I tend just to get on with it. Just find it odd as there has to be a reason. I’ve never heard of a low histamine diet. Do let us know how you get on. Good luck.
Forgive me please for intercepting but headaches that come on at night can be an indicator of something serious, please speak to a doctor if this is what happens to you
Hello thyr01d
Thank you for your message . My headache does not just come on at night and is a low grade tension for a lot of the time ..and other times less so. I have told my doctor about them and have a referral to neurology . Which will take some time I should think. But am pleased that GP is aware .
Forgive me please for intercepting but headaches that come on at night can be an indicator of something serious, please speak to a doctor if this is what happens to you
I’m undiagnosed as yet. I also have another chronic AI disease of rheumatoid type but am free from serious meds. I get cluster migraines but don’t know the trigger. In the last two years a feeling of pressure in my head and face combined with tinnitus, dizziness and odd hearing sensations have arrived . I’m going to describe this a feeling like a helicopter in my head. My vision is getting worse despite drops for dry eyes. I’m sure it’s thyroid related and am thinking about testing privately so I can optimise vitamin and minerals as suggested by many here.
Hello, I have graves for twenty odd years. I am on 5mg carbimazole every two days. Got thyroid eyes. Had a bad stressful 2024 lost both in-laws and wife's had an op. Have had bad headaches in the past and I have been getting them recently again. Woke up with a very bad migraine and pain behind my eye after drinking one glass of wine. Had it all day until about 8pm. Decided to go low histamine diet and things have improved with headaches. Cut out a lot of aged foods only eat freshly cooked stuff and avoid some high histamine fruit and veg. Have suffered from eczema all my life and it's recently come back. In the last ten months I have had severe reactions to sesame and prawns, with all body hives, rashes and swollen lips. Previously these foods were fine. Something going on related to histamine overload I think.
hello jeud
I replied to you some days ago but it seems to have disappeared. Did you see my reply at al ?
Blood Pressure
Headache 
Severe headache
CHRONIC HEAD/NECK & JAW PAIN - diagnosed Hypothyroid & maybe menopausal symptoms 
