Is it possible to get really really bad headaches with thyroid? I've had this headache for the past year now, it's like a burning sensation on the top of my head, also like full of pressure with ringing ears. Had ct scans to MRI to blood tests to rule out anything like tumour. My doc keeps giving me painkillers one after another but nothing seems to take the edge off let alone make it go away.
I'm on 50mcg Levo, magnesium, vit d iron supplements, zinc, just wondering the the doc missed and links with the thyroid and this nagging headache. It's been a real struggle the past year (still on going), now they saying despresssion but I'm far from that as I'm in a goodace in my life at the moment apart from this thyroid issues.
ANY suggestions and advice will be much appreciated x
Thank you all
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Maya_83
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I have a low level chronic headache which seems to be common with pituitary tumors. I also grit my teeth which causes TMJ pain & earache, which doesn't help.
Have you tried taking B12 for the ear ringing? I get tinnitus when my levels are low. High dose sublingual methylcobalamin helps.
Last time my bloods were checked I had too much b12 my doc to told me to stop taking the b12 supplements. But didn't notice any difference with the ear ringing.
I clench my jaws too when sleeping so i tried a mouth guard for several months, didn't make any difference t the headaches at all.
It seems to be a mystery what might be causing the headaches. It's there all day every day, it's so disabeling. Docs seem uncertain too , that's why trailing me on strong painkillers.
Have you tried a chiropractor or osteo to give your neck a tweek?
Acupuncture might help, too. I find it good for most things, & a drug free/lesser drug alternative. Try some acupressure for 10 minutes on these points:
I saw someone local to me many years ago, but preferred Acupuncture & Tuina, i'd consider going again for spinal manipulation, even though it made me swear!
If you add your test results for TSH, FT3 and FT4 and do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?
If not had antibodies tested ask that they are
Also have you had vitamin D, folate, ferritin and B12 tested? Add results and ranges if you have.
Low B12 linked to tinnitus (ear ringing)
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
My results for folate vit d iron even b12 came back all ok. And I'm still taking all these to supplement further.
I started on 25mcg 7 years ago then upped to 50mcg 5years ago.
I even tried taking double dose of 100mcg and for two weeks the headaches vanished almost like I never had them so I carried on taking 100mcg , but the headaches returned and my monthly cycle was non existent so I went back to 50mcg. Told the doc this but he was unhelpful. Plus I still have all the hypo symptoms.
Well 100mcg may still not have been enough or you might need addition of small dose of T3
What are your most recent blood test results for TSH, FT4 and FT3 plus thyroid antibodies.
TSH should be around one (or slightly less) and FT4 towards top of range and FT3 at least half way in range
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Request list of recommended thyroid specialists too
Professor Toft recent article saying, T3 may be necessary for many, otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
I was wondering about an allergy as well. Try taking a antihistamine one hour before Thor medication and see if it helps as being allergic to the fillers is not uncommon.
When I was taking the generic which is levothyroxine, I too had headaches but also nausea. When taking the name brand Synthroid side effects went away. I wonder if maybe trying Synthroid or Tirosint would give you an option. Are you taking any other vitamins or protein powders?
Hi Maya. Yes, the doctor does need to write that prescription for Synthroid or Tirosint. Tirosint is Synthroid however, the Tirosint is in a gel cap and is more hypoallergenic. It also is digested in the intestines instead of the stomach so you don't have to wait to eat or drink coffee when you take it. I have also read that the Tirosint may be a tad stronger even if it is the same dose because it isn't getting destroyed by stomach acid or from malabsorption by the stomach.
And just another note, I had been getting migraine with aura for two years and I discovered that it was the protein powder that I was using. Most protein powders contain high doses of amino acids, much stronger than what is in our food. The amino acid l-glutamate or l- glutamine is MSG and they can cause migraines, migraine with aura and seizures. I also can no longer eat protein bars, because they will give me headaches. No more top ramen noodles, some boullions and some bone broths that contain too much MSG. So maybe check and see if this is an ingredient that is your food or supplements. Since I have eliminated these items I haven't had a migraine in 10 months now. Just thought I'd throw that out there for thought.
Why iron supplements Maya? I’m not qualified in any way but i’m on a Magnesium page on Facebook and they think iron increases oxidation and should almost never be taken.
Maya low iron can also contribute to the symptoms you are having, so try to get those numbers up. Do you know why your iron is low (bleeding ulcer, heavy periods, etc.)? Try to solve the root cause and then you can stop the ferrous fumarate.
How much magnesium are you taking? I started with scarily painful daily headaches over 5 years ago..they have gradually reduced and a migraine clinic told me to take 600mg of magnesium daily ( 4 hours minimum from meds) which has helped me. Good luck.
Hi I take 2 x solgar magnesium citrate 400mg (I was told to take 600mg per day) and I take these an hour before bed. Sometimes I use a powder form instead. I hate the oil because I find it sticky (gets on everything), prickly and smelly. I think the powder format is best because it doesn't sit in your stomach or your oesophagus. Magnesium has a laxative effect which tends to help hypothyroid symptoms of constipation. A win win situation Also..source some cheap epsom salts from the internet and try a relaxing bath.. Its lovely!
Hi, Maya, if you have put on weight and suffer high blood pressure then this could be the cause of your headaches, I put on weight after my thyroidectomy and had to up the dosage on my blood pressure pills, if you have explained your headaches to your doctor and they have not done anything about it then I would be looking elsewhere for better medical care, all the best.
I had bad headaches that just wouldnt go no matter what I took for it, for 11 years !! I stopped talking my thyroid meds, and the headache went !! Finally! I was the put on levothyroxine oral solution. No more headache !
Maya hi, I’ve recently been doing a lot of research into vitamin supplements for myself and came across B2 (400mg) is being used by people for migraines/ headaches. Doctors are also prescribing this also for their patients Maybe you could check it out. Hope it helps x
With the little knowledge I have about hypothyroidism, continual headaches are a symptom. I had a headache 24 hours a day until my TSH level was lowered by taking Levo. Then my GP in her infinite wisdom told me to stop taking Levo altogether. Six weeks later...my TSH is at 24 and the headaches are back, there’s a surprise! I’m back on the Levo now. So I’m convinced there is a link.
Do you also feel your eyes are pulling? I have this contestant pull on my eyes as if I'm so tired I need to sleep and god I can't stop yawning even though I slept really well. It's driving me potty. Then I can't do anything and no energy cos I feel so tired and this has been going on for a year now
I feel constantly tired with zero energy, not sure about the pulling of eyes though. Again, I believe tiredness is a symptom of hypothyroidism. Sounds like you need to revisit your doctor.
I've had a thyroidectomy due to Graves' disease. I'm on Levo 100mcg and I take supplements.my endo signed me off, without even seeing me after my surgery, on my blood results, saying they're great.
While I feel better with no crazy t3 overdosing, my system is struggling. I have constant headaches and nausea, my weight is stuck no matter how much exercise I do? And god I'm so tired, and I have lack of incentive.
Hi Maya, I had headaches for almost 10 years (was also undiagnosed Hashimotos, relevant or not) GP said wear & tear in neck joints would have to live with it, tried everything pretty much but eventually went the chiropractor route (even though I think a lot of Chiro’s give it a bad name, some are like salesman & just seem to be there to make a quick buck) so in 2003 I had a 4 week (3 times a week) bunch of adjustments (costly but so worth it) & now just get adjusted once every 6 weeks £36 - I think for a mere £300 a year I am so grateful not to have headaches any more, I suffer if I try & stretch my appts but if you’re anywhere near New Milton Bournemouth I can recommend a very experienced chiro (I am not near Bournemouth but happy to travel 3hrs round trip to see him) pm if u need any further info. Hope you manage to get them sorted x
Maya you need a Levo increase as your TSH is too high even tho it is in range. I think doubling your dose to 100 was just too much for you and perhaps the return of your headaches at that time was due to over medication (for me the symptoms of hypo and hyper overlap and are very similar). Talk to your doctor and ask to try to increase to 75 mcgs. Then retest in 5-6 weeks. If they won’t allow you to do this then find a new doctor who will listen to you.
YES this unusual kind of headache you describe can be due to thyroid issues. I was just suffering the same type of pressure headache daily until I began taking 88 mcgs of Levo, having worked up slowly.
Feels so good to know I'm not going crazy. Docs think it's tension type headaches but I know my own body. I didn't really take any of those painkillers prescribed for more than a week.
Did you ever get like your eyes were pulling too, as if your very sleepy. It also feels like a very heavy head like I'm pulling my head along with a lot of weight on top of it.
I have an appt later I will defo ask for tirosint or beg for a t3.
Omg yes with the “weight on top of the head.” I also had trouble looking directly at people when I would be in a conversation, like a focusing issue. It’s only recently subsided and I will still get a pang or two of the feeling every day but it’s not constant anymore, thank goodness! I was very worried the sensation was not related to my hypothyroidism but it seems that it was. To put your mind at ease, I also had three doctors tell me yes, hypothyroidism can cause the wooziness you’re feeling (a family practice doctor, an OB/GYN and an ENT). They were right, and it just took time for it to go away.
If I were you I would not switch what I was on just yet, keep it consistent and try the 75 mcg first. Then if your labs look good but you still feel bad try to switch.
When you hear that thyroid drugs have a “narrow therapeutic index” that is exactly what it implies: you literally have to tweak the dose to suit you and if it’s too high or too low you’ll feel like poo. There is a “sweet spot” for you, you just need to find it
Be careful with T3, it is very potent. I just tried it and as it turns out I do not need it. I am converting the T4 to T3. Make sure you’re getting FT4 and FT3 lab work done and follow your trends. If those numbers are going up then you are converting and you may not need T3.
I had a TSH of 2.3 recently and felt heinous, still feeling the heavy head sensation. So if your doctor pushes back on raising to 75 mcgs, keep pressing him OR find a doctor who will help you. You can and will feel better but it’s going to take time.
I totally agree with thyroidrose. I too have had the eyepulling and heavy fatigue when I went off of my meds and had to restart going up ever so slowly. I'm finally at my old dose of 75 mcg which I was on for 25 years and its taking time for my body to get used to it. The eye fatigue, pulling and vision problems are very slowly getting better. I had to start and restart because of being overmedicated for a long time and went hyper. Hope this helps.
Thank you for your reply.. I saw my Gp today and as usual she said my ranges were fine and I didn't need anything doing just to stay on 50mcg. I told her am still symptomatic despite the ranges being normal and on 50mcg she gave me funny look like 'I can't do anything else'. I sort of had to push her to go the dose and trial for 6weeks and see if there's any improvement. I also pushed for and referral to endocrine. She was not happy !😏
Now long long til these headaches subside? cos that's the hardest symptom now.
So I understand, she did not increase but referred you to an endocrinologist? Or did you get the increase to 75 mcgs? Good for you for insisting!!!
If you did increase I would say you may experience improvements in as soon as 2 weeks. If it's still not enough you won't feel much of an improvement until you increase again. Fingers crossed that this is "your magic dose" though!
Yes she did increase it to 75mcg. Thank god. However I'm feeling a little uneasy today.. I've been taking 75mcg for 3 days now.. is that something to worry about or would it subside?
Try to give it time, try not to worry about weird feelings. Your body is adjusting to the new amount and you may have days where you feel worse before you feel better. But you're on the right track I am sure.
Also, try sleeping with your head elevated a bit at night. Not uncomfortable that it bothers your neck. You can buy wedged pillows on Amazon. Also, have you had allergies tested? It could be your sinuses that cause your headaches, as well. I am allergic to mold and dust-which I can never escape-LOL, also, switch out the manufacturer of your Levo. I now use Tiroscint-a cleaner, less addiditives, in my meds. I feel better on these. No dyes or unnecessary ingredients. Good luck and keep us updated, I am so sorry you feel this way.
They ruled out any sinus infection with a ct scan. But I do feel my left nose is always blocked and all this started when I started Levo 7yrs ago, also the headaches but it was nearly as bad as I have them now. It's like my head will explode!
How long did it take for you to feel better on Tirosint?
Truly days!!!! And the fact that your nose is blocked for 7 years is not normal. Truly sounding like an allergy to me. They say Tirosint is so much better for those with allergies, Celiac, etc. It absorbs better, does not interact with coffee, stomach acid and has no fillers. Your headaches could be getting worse bc you keep taking a med that causes your allergies, therefore building up in your body and your body is telling you it does not like this medicine! I would try to switch, your Dr should have no reason not to try it. xo
Can't be sure as we are all different, but I've had headaches a lot since having problems with Levothyroxin. Also the thyroid is controlled by a part of the brain situated where you describe you have the headache. Because of problems taking Levothyroxin and waiting for an appointment from Endo I actually dropped too low and experienced that part of the brain trying to get the thyroid to work, that was awful like my head was going to explode, also in that area of the brain. That was the brain trying to get the thyroid to produce Thyroxin.
Both BadHare and 1963MaryJ have mentioned the possibility of neck involvement. I had a constant headache for 18 months until my doctor suggested i take a look at a book by Robin McKenzie entitled "Treat Your Own Neck". This book was a miracle for me! My headache had gone within a week of starting the very simple neck exercises.
Hope it works for you. I would also follow the advice given in the above replies re. asking for an increase in your medication.
Try Trigger point therapy excellent it is ! a inexpensive book is The Trigger Point Therapy workbook by Claire Davies (if moderator allows) sorted my TMJ problem and pressure on top of head problem
If you are on laptop or computer a lot this can adversely affect the range of nerves beginning at the neck being forward and this create trigger points.
I would not be without this book it is worth it's weight in gold, my go to for lots of other problems too
Hi Maya, last year I started having very bad headaches on daily basis with other weird feelings on my head and tinnitus, I tried lots of different things to get rid of it but I think that having physio on the neck really made a difference, I haven't had a headache for months. I hope it gets better soon.
Hi Maya, I know this is an old post but have you resolved the headaches at all? I have virtually all the same symptoms as you. Head pressure, eye problems, sinus pain etc, also occular migraines, the zig zag lines in one eye- horrible. I'm currently waiting on a dose review as my TSH was 14 ( down from 161 in April!) and I'm on 88mcg levo at the moment. Woke up with the headache again this morning, both top and back of head, so just searching for advice when I spotted your post.
In the summer when I was well I didn't have the headaches at all! It completely disappeared. So I figured it was definitely linked with thyroid. It still comes and goes as I'm still trying to work out an optimal level.
Non of the doctor's prescription medicines worked as I tried it out of desperation.
The headaches came back full blown in September then when the clocks went back and my ct3m dose was originally at 5am which now I'm taking at 6am fixed the headaches again. (Thank god)
Thank you Maya. I also haven't worked out what's causing the headaches. I can only describe it as the sort of headache you might get when you're very, very tired or haven't slept. I know I need my eyes tested too as I'm very overdue for new glasses . Paracetamol doesn't help the headache. Yes TSH 161, and the T4 was so low it was undetectable! I was having very bad symptoms for over a year before I was eventually diagnosed. The headaches have only really started after being on levo for a couple of months. I'm waiting on my latest results so I maybe need a bigger dose although the current improvements since starting meds are like a miracle! I'm just using the NHS meds so no NDT.
Maybe I also need to look at timing of dose etc. Currently I take levo very early morning as recommended, like you, although I've seen it suggested that some should take it at bedtime instead.
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