I had an awful migraine on Tuesday, and the yesterday was a day of catching the water falling out of my eyes all day. I gave up bread and grains quite a while ago, and found my shortness of breath improved a great deal, as well as other syptoms.
Well, ive been lax for a few days, and I think that may have brought on the migraine attack! Gluten intolerance, one of my many problems.
Then I read that Changing Seratonin levels can bring on migraines ( L-5HTP? )... And because of my awful low mood yesterday.. I wondered in I'm bi-polar?
I was surprised to read about the confirmed connection between thyroid issues and bi-polar syndrome..
One thing I do know, is I'm screwed.
I can't hold down a job because of the bad migraines, I can't get PIP, ESA, or any benefits because migraines are not fully recognised as the crippling debility that they are...my GP is too ignorant to recognise my Hypo thyroid problem... My mind is telling me there is no God, so go ahead and check out...it's ok.
The reptile part of my brain ( the part that has no emotions) is saying " you asshole, why are you getting so upset? So what if your tired? So what if your head hurts? You think your back hurts now? Wait a few more years ...Why are you so obsessed with your physical symptoms? Rise above them! Get a damned job and go to work with a Migraine, just Take the pills as soon as you think you may be getting an attack: instead of waiting to be sure .... ( Sumotriptan flattens me, it helps the pain, but takes a hard toll on my body).
The thought goes on to say " at least you are not locked up in some dungeon, or the wife of a Taliban, or homeless in Egypt...or blind or locked-in ...you are not truly suffering, you have no real hardship in your life; that's your problem!
The inside of my head is like an angry sea, waves pulling me this way and that... I'm so tired of being that cork !
And I believe it's all a chemical imbalance..the sputtering twitching thyroid not doing its job. Or some hidden dark tumour growing somewhere in my body ( how many people suffer with awful depression for years, then cancer gets detected, treated, then they are ok ? )
The one thing guaranteed is we all die. No need to hasten it, because time is speeding up anyway, it's on it way, just sit tight and wait.
Nutjob? Maybe. Depressed? Definately.
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Elainerevolves
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The two main thyroid hormones are T4 and T3. T4 has little activity in the body, its main purpose is to act as the raw material for conversion to T3. Conversion goes on at different sites throughout the body - liver, brain, heart, muscles, gut etc. The thyroid also produces some T3 directly without conversion from T4 being necessary.
It has been known for decades that low levels of T3 in the brain cause depression and other mental health problems. There have been plenty of members who have found their depression reduces or goes away when their thyroid hormone levels improve. There have been some members who have been diagnosed bipolar who have found it goes away completely once they get thyroid hormone levels correct for them.
Poor thyroid function has a serious impact on the gut and stomach acid levels. Food ends up poorly digested, gut problems abound, and people end up being very low in lots of important minerals and vitamins. Doctors are quite happy to see vitamin levels scraping along the bottom of the range and tell patients their levels are fine. But people with thyroid problems need nutrients to be at optimal levels, not just at the bottom of the range or below it.
Low vitamin B12 can cause all sorts of havoc. One of the known effects of low B12 is psychosis. Lack of vitamin D can cause depression. For the thyroid to work well and for conversion from T4 to T3 to work well needs good levels of many vitamins and minerals.
Go back to the days before thyroid problems could be treated and the sufferers often ended up in asylums. They still continue to appear in psychiatric hospitals today because nobody thinks about the thyroid. They also don't test T3 very often to save money, so people still continue to be given anti-depressants and anti-psychotics, when what is actually needed is proper thyroid treatment and higher levels of minerals and vitamins.
I know I sound like a record sometimes, so apologies to those who've heard this before.
Have you been properly tested for Lyme Disease? When I say Lyme, I ALWAYS mean Lyme Disease and/or co-infections and/or parasites. They hunt in packs.
The sort of, apparently random, collection of symptoms you are describing very often have an underlying infectious cause. This is generally unacknowledged and unrecognised by the medical profession.
Are you a Facebook user? If you are, I suggest you join one of the many Lyme groups on there, describe your symptoms and see if people recognise them.
Funny you should mention Lymes disease; I grew up in Africa, and we always had dogs and cats, and ticks were a problem.
I remember at age 12 brushing up against a bush, and finding myself covered in tiny ticks. I got very sick within 24 hours, and was given antibiotics.
I've always been a tired person, wondered what wrong with me. My friends would always mock me, because I needed so much more sleep than them.
I've had Malaria too.
So, if I go see my GP and ask them to test me for that, I'm going to get stonewalled too... My brief look at the Facebook pages tells of a total lack of adequate diagnostics with Lymes. Add that to the Thryroid incompetence and we have a whole lot more frustration.
Hi Elainerevolves , sorry you're feeling so bad, migraines plus Hypothyroidism is no joke; my story is very similar to yours. I have been unable to work for years, I think chronic migraine should be classed as a disability.
Migraines are awful, I am a long term sufferer. I know what you mean about Sumatriptin, it made me feel awful and didn't stop all the migraines. I have tried so many preventative treatments, but for me, the only thing that stopped the migraines was Pizotifen. (I didn't like having to take it but it is the only thing that lessened the attacks)
Since being effectively treated with Levothyroxine plus T3 (I buy it myself as Doc/Endo won't prescribe), my migraines have started to improve. I still get the odd one (usually when I overdo things or if the air pressure is very high or very low). Also getting my vitamin D level up helped a lot.
Hi Annie-7; thanks for your reply. I've noticed that too; when I overdo things I get a migraine the next day. I'm trying to get my vit D levels up, taking supplements but not helping. ( awaiting test results)
I feel like a drowning person, and the more I try to help myself the quicker I sink .. Most of the supplements make me worse, juicing veg & fruit gives me upset tummy, followed by a migraine.
The brain fog makes me feel stupid, the depression makes me feel ashamed at my weakness, so so tired of it all.
I'm so glad I found this forum, where fellow sufferers understand. I'm trying not to bore my nearest & dearest with my desperation. I feel guilty enough for being so useless.
I've been thinking how sweet & quick a bullet between the eyes would be. But knowing I can't do that to my family.
So one must grit ones teeth & self medicate with whatever one can find.
Whenever it all gets on top of you, just come on here and ask questions/have a rant, it really does help! There is a wealth of knowledge here and everyone tries to help.
It does tend to be trial and error regarding supplements, but be sure to get your Vitamin D and calcium levels tested. GP will usually check calcium levels if you are vitamin D deficient. I take Veridian liquid Vitamin D (couldn't tolerate the capsules/tablet forms) alonside Jarrow Vitamin K MK-7 (to make sure the calcium goes to bones/teeth)
5-HTP is the second substance down on the left. It converts into serotonin, then into something else, then into melatonin. (Melatonin is very important for getting to sleep.)
When I started taking 5-HTP it improved my sleep a bit, but I still had quite severe insomnia. So I bought some melatonin and tried taking that. The melatonin had a dreadful effect on me if I took more than a tiny crumb of the stuff - it made me terribly depressed and gave me thundering headaches and visual disturbances if I took it more than about once a week. I gave up taking it unless I was absolutely desperate.
Move on about 3 years, and I had been slowly improving my thyroid hormone levels, and my vitamins and minerals. I had other ailments that had been fixed as well.
I have no idea which particular thing helped, but after a gap of well over a year since taking my last melatonin, I took some as an experiment. It worked, I got no headaches, no visual disturbances, no depression. I took it again the next night - same thing. I still wouldn't take it every night, I'd only save it for emergencies.
Improving my thyroid health and my nutrient levels has allowed me to do well with a few supplements that at one time I couldn't tolerate.
Perhaps if you got your nutrient levels up to optimal and improved your thyroid health (if it needs improvement) you might get rid of the migraines. Worth trying, I would have thought.
I'm not sure like is the right response to your post, but I'm glad you posted it. I'm not that long diagnosed with hypothyroid, but I do recognise the symptoms you mention apart from the migraine bit. I have had depression many years ago, and do suspect it has come back. At times I'm alright, other times, can't face anyone and have a terrible mood, usually when I've overdone it or had a stressful event happen. I'm for the doctor on Tuesday to discuss the multitude of symptoms. Hope you and me (and everyone else here) feels well soon, or at least at some point!
Thank you for posting.I have been trialling adding NDT to my T3 for 6 weeks & am now going back to T3-only,as adding T4 back in has affected my mood,as well as giving me a 10 hour episode of tachycardia,with my heart going at double speed.
It will take a couple of weeks probably,to get me back to where I was on T3-only.In the meantime,I am being reminded mildly of how bad it got on T4-only.When poorly medicated before T3,I would get "ending it all"thoughts almost daily.These were always after any sort of stress.
Also,the fatigue & other symptoms of this illness make me feel quite isolated & I get lonely.I feel sad quite often for the losses this illness brings,especially through lack of energy & stamina.
I have woken up from a long deep nap feeling low & now when this happens I come on here.I think of you folk as "my tribe"now.I am so glad of this forum.Like isn't really the right word,but thank you for having the courage to be open & honest AND to seek help & comfort by connecting with fellow-travellers-some of whom have encouraging tales to tell of how it gets better.
I can tell you that getting optimal thyroid hormone replacement makes a huge difference to mood,to thoughts,to outlook.
Reading your post brought a tear to my eye, because - yes, it's so lonely. I wake up and my first thought is- " I'm still stuck in this awful part of my life, it's not over yet".
Could 25mg of Levothyroxine be making me feel like this? Should I stop taking it ? I've started taking a low dose of Armour with it.
I know this isn't me, I had a powerful sense of humor- I have skills, I get on well with people, I work hard.
Now I'm a ghost, I've tried reconciling myself to accepting my role in the house as a beloved pet, alive for no reason except to keep my partner company.. No good as a cleaner or housekeeper because I'm too tired!
My sofa is groaning under the weight of unfinished projects, my side of the bedroom the same, only other craft projects, that are just too hard for me to deal with, even though I love them!
Yes, this is my tribe too, it's comforting to reach out and just make contact with someone else, who understands.
Elaine,you need your TSH to be 1 or below. Normal is not optimal for you .25mcg is just a starting dose that can make you feel worse as your thyroid senses the introduced T4 and produces less.
I so sympathise, migraines coupled with hypo are a match made in hell! my migraines are definitely hormone related....start with not being able to sleep for 3 days, vision distortions on day 4 with full blown migraine within following 8 hours...period 12 hours later. I generally don't like to document too much, because I can get a bit obsessed, but I found it invaluable to keep food/mood journal to find other triggers for my migraine- plus it felt like I was at least doing something....it might help to see if something else is also triggering. Really hope you find something that helps.
For me, migraines are 100% related to food and are worse when hypo. The problem is that they tend to change. Various things I've been intolerant to over the years include wheat, corn, egg, milk/dairy, tomato, bell peppers, eggplant, partially hydrogenated oils, zucchini, spinach, chocolate, various types of nuts, other stuff I can't remember now..... In the beginning it was quite difficult to find a pattern because the migraines seemed to come on randomly, and not necessarily after a meal.
But once I figured out the main intolerances (wheat and dairy) and cut them out, most of my migraines disappeared. Since then, new migraine triggers are relatively easy to figure out because the migraine starts within 15-30 minutes of eating the offending food. I can now eat wheat and dairy again, but egg is a problem. I have no idea why they change around - my sister is the only other person I've heard with this (though I suspect many other hypo people suffer from food intolerance-triggered migraines but they just haven't been able to figure out it's due to food, due to changing intolerances, which makes it difficult to find a pattern).
When I'm well-optimized with thyroid meds, my migraines and food intolerances completely disappear. I assume it has something to do with hypo-induced leaky gut (which is more and more linked to SIBO - small intenstinal bacterial overgrowth... which is very likely due to a combination of low stomach acid and slow motility... due to being hypo!). SIBO can be treated with rifaximin (expensive) and herbs (supposedly). But my gut normalized on its own once I got the hypoT under control.
Well, hope this helps a little bit. I had nearly daily migraines starting at a very very young age, and it was absolute hell. Now I rarely get them, but if I get them, they cluster around PMS-time, so there's definitely a sex hormone component too. In any case, there is hope!
Thank you for your reply Jade; and wow! That's exactly the same with me... The food intolerances change all the time.
My digestion is rubbish. There is definitely an issue there.
I feel a tiny bit better today because I have a plan; I'm going to stop taking the Levo ( it's only 25mg) because the insufficient dosage is making me worse.
I'm going to get a proper test done by Bluehorizon; to see exactly what my T4/T3 and other levels of things ( hell- I can't remember all the ins and outs ! ) and then... I will have an accurate picture of what treatment I need.
It's so hard, to find when I am so functionally compromised ; that I must sort myself out! Of course, I wouldn't have a clue without the help of the wonderful people on this site.
I'm so lucky to have the support of someone who loves me, and my grown children who care, because if I were on my own, I wouldn't have made it this far.
I feel for the people who don't know where to look, who don't have access to help, who don't know what happening to them.
If I were a religious hillbilly without access to the Internet; I would believe I were under demonic attack and would my sanity would have flown out the window ages ago !
Glad to hear you have a plan. That always helps LOL! But you will need to wait 6 weeks or even longer to allow the T4 to completely wash out of your system and allow your own thyroid to kick in. If you have labs from before starting meds, I would use those as a reference. Stopping meds sounds like unnecessary torture to me but you know yourself and your situation best!
I forgot to mention that in my case, my intolerances tend be whatever I eat *every day*, and sometimes have cravings for. (Excluding chocolate haha). One way to avoid the intolerances but stay somewhat sane is to first avoid the food for a few weeks/months, and then introduce it back once every 5-7 days. Rotating foods and avoiding eating the same ones every day helps avoid the intolerances. So if you cheat, do it once every 5 days.
Before I was diagnosed I had crippling hormonal migraines every 14 days (period and ovulation). Over the years prior to diagnosis they got worse; starting as being a 1 to 2 day migraine with my period and ending up as a 7 dayer. So I really do sympathise.
When I was diagnosed the levo (for a year) got me down to 3 to 4 day migraines, with the ndt (taken for 2 years in Sept coming) I am down to a bit of a headache for a day or so before my period. I have classical migraines so I know the difference as when it was really bad I'd have an hour or two flashing light show and would vomit (or retch as after a while there's nothing left) every 20 mins or so for at least 6 hours.
So, are your migraines hormonal? Or food? Or both? Worth keeping a diary.
My only bit of advice that I can give is when I was finally diagnosed after 6.5 years of hell (I'm sure my thyroid was 'going' before this but that's as long as I was going to the quacks) is that I was diagnosed because I changed GP practice. Try this (get recommendations). If this doesn't work think about self medicating, I really wish that I had thought about it but my previous quacks had me convinced that it wasn't my thyroid (as I was 'normal' which I found out later meant that my Tsh was lowish and my ft3 and ft4 were below the ranges....)
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coming off levo due to feeling ill.?
histamine in cheddar cheese
Walkers cheese and onion
