Hi HyperSally:

Ask the pharmacist or research online on how Aimovig does with thyroid issues.

I would also consider working on lower the PTU dose more to get the FT3 at mid range and the FT4 at the upper third range.

{{{hugs}}}

Thanks, mmztcass. I was supposed to, potentially, try seeing if I was in remission last time I saw endo. That was mid-January, but my TRAB levels were still a bit high. They were 3.43 when they need to be below 1.75. Next appointment is in late May. I'm not sure how I'll go down lower than 12.5 of PTU as the pills are so crumbly. Maybe a pharmacy that does compounds would help. Now that I've been on PTU so long, the idea of being on a wee bit of antithyroid med, like you are, doesn't freak me out.
Am keeping an ear open on the boards re: interaction with thyroid disease. The medication is so new, I don't think all the potential interactions and effects on other conditions have been fully explored.

Thanks again for your response. Am looking forward to one day having my fT3 up in the mid-zone :)
hugs

Hi:

I really do not know much about Aimovig. Just researching now at the migraines sites makes this drug scary from reading some of the people's reviews. :-(

So my thought is that if the Magnesium levels are low as is the case for about 80% of the population have low levels, that migraines and other issues come about.

So maybe research on the Magnesium as a cofactor for at least 700 enzyme systems in the body may be worth it. Our soils are deficient in many minerals that we are not getting enough from our foods to help our bodies function normally.

{{{hugs}}}

Hi HyperSally,
I used to have migraines with auras. I went to see a specialist (Neurologist specializing in headaches) and he gave me some of the best information I ever got on avoiding them. The whole idea of taking medication for them was something I didn’t want to do. So here it is - change your diet. No canned food, no preserved food, no pickled food, and lessen your intake of salt.
I used to think is was only “female hormone” related. Little did I know that thyroid hormones have a major connection to how we feel. Also, stress plays a major role in migraines. Abdominal breathing, warm bath, meditation are some ways to deal with it. BTW, if you don’t find the cause of the headache, then taking medication ONLY stops it when you take the medication. Like Graves Disease, one of the best ways to deal with the symptoms is to change your diet. I hope you feel better. Take Care.

I've had chronic migraines for over 30 years now. Have taken many of the preventatives and follow many of the protocols (including taking a tonne of magnesium - for years and years). I've followed the directions in 123 stop your migraines - or whatever it was called. And have numerous times stopped all meds and caffeine (which I don't use much of, but if I stop I'll have a severe migraine for weeks) and gone on elimination diets and stopped eating this that and the other for 6 months at a time. I definitely have some food triggers, which I avoid, and alcohol. But many of the others I can't avoid - the environmental triggers.
Taking the CGRP is a last ditch effort for me, as I've tried just about everything I'm willing to try (not willing to try anti-seizure meds and only have tried the tricylic antidepressants once, and would prefer to not use botox). You get the picture, I've been dealing with migraines for very long time. As for the bad reviews on the drug sites - they're worse than the reviews on the migraine boards. I noticed that most drugs have scary reviews on the bigger drug boards.
Funny enough, the most recent time that I was without migraines for more than 4 days was when I was first diagnosed with Grave's and had to take Atenolol for my irregular and racing heart. No migraines for two months! Lovely, but I felt terribly due to Grave's issues. Then when my levels got back to normal I couldn't take the Atenolol anymore - made my heart rate dip into the 40s and my blood pressure plunge.
I'm crossing my fingers for some relief with the CGRP biologics. Thanks for all your suggestions and hope I didn't come across like a cranky-pants :)

hi HyperSally:

Please do not worry about being a cranky pants. I've had RA for over 26 years and have had GD for 18 years now. I do what I can.

I have had difficult times with environmental triggers outside of the home. I do what I can do too from having my moments with these.

I have found with the Magnesium that taking it in liquid form has been more absorbable for me than some of the ones in tablets or capsules of various forms. So perhaps I have found something to finally work for me instead of not having something that didn't absorb well as from the synthetic vitamins/supplements.

I have decided that taking the multiple minerals in liquid base for the past month was working better than the solid forms of minerals to which I struggled in the past to get the numbers to come up in the lab tests.

I hope that by making those changes along with what organic and non-GMO from my diet, household and personal products are used will make things more balanced for my autoimmune disorders.

{{{hugs}}}

Hi HyperSally,
I take no offense. I know how debilitating migraines can be. Mine were so bad, they would come out of nowhere and literally blind me. I would crush 2 325mgs of aspirin (swallow with a little water) go into my bedroom (if I was lucky enough to be close to it) close off all the lights, lay in bed with pillows over my ears and pray as those aura patterns danced across my eyesight. When my eyes were closed I would see those flaring white lines in zagid forms going from the right to left. Getting bigger and smaller. I have had these since getting my first cycle - I am now post menopausal. My neurologist said there are small connections to one having strokes (which I had when I was 27) It’s in the brain wiring or circulation of blood.

When I was confirmed with GD, a year ago, the migraines showed up a few times. When I took the MMI, I started feeling calmer and I didn’t get them as much. Prior to that I saw Neuroligist who were trying to give me anti-depressants and gabapentin. ALL of this was connected to my thyroid. I know it.

I really feel for you. When being a lab rat for doctors who cannot figure out how to help you.....or diagnose what the cause is, is totally frustrating.

May I ask you about the 2 months that you were on the Atenolol? IF you think this is heart related, have you seen a cardiologist about this?

Second, the drug itself, Atenolol - I would speak with a person at the drug company to see how it works and why it might have helped your migraines.

I wonder how Atenolol helped you those 2 months. Believe me, I have been to hell and back with the medical community - MRIs, brain scans, spinal tap, medications on all levels. And, I was angry as hell at my PCP for not catching my GD.

May I suggest to see if there are any vitamin deficiences in your system that might contribute to the migraines. I have been tested for Vitamin D, Magnesium, Zinc, copper and more. My labs found the deficiences and I am taking supplements for them.

I truly hope you find something that helps you without giving you other issues. And, like I said before, I take NO offense. Speak your mind. Take Care.

Thanks very much to both of you. StillLearning - oh, can I ever relate to the hours and days spent in bed with ice packs in a dark room waiting for the pain to subside. I don't have aura. Sometimes a postdrome of a strange dripping sensation on my brain. That's a good suggestion re: the Atenolol. I've asked my neuro and others about what about BP meds helps migraine sufferers, but haven't gotten too far in the responses. I haven't found my migraines to be related to my thyroid condition other than when I get more stressed, the migraines get worse. When I was in fully amped up Grave's I was terribly anxious, so that probably made the migraines worse.
I also have IBS. Definitely feel like there's a big connection between the migraines and IBS, but continue to play this stupid game of whack-a-mole (apology to violence against moles...) with meds and lifestyle and dietary adjustments.
I've been tested for vitamin and mineral deficiencies, but other than running low on iron once in awhile, I have good levels of everything. The Grave's did take a run at my bones though and I have ostopenia, but ideally that will sort itself out.
I wrote another response yesterday to mmstcass and you, but have had my replies time out and get deleted - 2 or 3 times now. Hoping this one gets through. I think on one of those replies I said something about going on a permanent yoga and meditation retreat... I'm sort of not kidding :) Thanks for all your understanding and good advice. I'll keep looking under the rocks to see what I've missed.

Hi HyperSally,
Being the daughter of a retired pharmacist, I HIGHLY recommend talking to a pharmacist (over ANY doctor) OR call the Atenolol company to talk to THEIR pharmacist or a person who knows about that drug.
It might sound strange BUT some drugs have aided other medical problems over the one that they were initially made for. (Example: Viagra) Go figure!
IBS - another auto-immune condition. Oh boy! We are prone to that happening. Getting more than one.

May I suggest, BEFORE taking any more medications, it’s time to do an inventory of what you are eating. Because (you know) that if you have IBS, it is the food you are consuming that is upsetting.

BTW, have you changed your toothpaste to non-fluoride? Have you tested your water supply for chlorine? These 2 things are a major disruptor. I changed mine and filtered my water. Have you cut out soy - major thyroid disruptor.

Me, asking you these questions is not to say you haven’t done it already - I am like a detective wanting to figure out the puzzle (Our GD triggers) Being that Graves Disease is an auto-immune disease, our gut is 80% (or more) a part of the immune system. It makes total sense that the IBS is totally related to it.
Have you seen a Gastroenterologist, yet?

Let me know if I can be of some help, here. I just want you to feel better.

I'm waiting to hear from the bio pharmacy that will have the Aimovig as I have a lot of questions for them, but you've got a good point there. I will do a bit more exploration of why Atenolol has that effect on my migraines. I've asked doctors and neuros why it worked, but they didn't give me very comprehensive answers.
Eating is a bit of a minefield for me. There's a lot of food I avoid: soy, quinoa (gives me days long stomach pains), dairy, gluten, most meat and seafood (I eat salmon and sardines), and I'm on and off with eggs. Because I'm at lower levels of fT4 and fT3 these days I've been mindful of my intake of goitergenic foods (sad - because I love peanut butter!). I don't drink - pretty much gave it up 20 years ago due to the migraines.
Our water is reverse osmosis. Toothpaste is bad - I use one for sensitive teeth.
I do see a gastroenterologist, who has given me some help for the IBS - C when it strikes. She's good at clipping polyps, but tends to talk about natural remedies using air quotes. :) Her suggestions for getting out a constipation spell have worked well. I end up using little of the prescription or laxative, but nice to know it's there if I get tied up in knots.
It is annoyingly like detective work, daily, 24-hour, detective work. Sometimes I want to toss it all aside and play with the other kids like nothing affects me. That doesn't usually turn out so well.
I'm trying to follow the Headache Clinic's Treatment Plan to the letter and I think some of it might be working. In particular, about 6 weeks ago I started taking melatonin regularly (5mg slow release - a good brand from my naturopath). The melatonin has been so-so for helping with my sleep, but I keep taking it because studies have shown that it has the same preventative efficacy as amytriptyline. I have also been having protein for breakfast 12-15 grams. About 5 - 6 days ago I read an article about having 30 grams right away when you get up. I started doing that as of Monday morning. I use pea protein and almond beverage - both are okay for my digestive system. The early hours of Monday morning (2:00 a.m) was the tail end of a week long migraine. I had a mild headache on Tuesday and nothing since. I have not gone longer than 2 days without a headache or migraine since... I can't remember. If my head's okay today it will be 4 days. I've told myself that if I go up to a week with little to no headaches then I'll put off or cancel the Aimovig. Would much rather find a more natural route. Especially since the Aimovig is hit and miss. Some people are super-responders and have had 0-very few migraines for months and months, other people are responding after a few months or getting 50% less, and others are getting negative reactions (some quite terrible). I think it's such an amazing breakthrough for those poor souls who have suffered with daily intractable migraines! Terrible. But the jury is definitely out for the overall efficacy of the biological and how it affects people with other conditions. My sense is that people with fibromyalgia have experienced increased pain.
I'm going to cross fingers that this good head streak is extended (forever) and will continue to sleuth about what works and what doesn't.
On top of this, want to keep the thyroid happy as I'm hoping to try and see if I am in remission as of end of May.
This responses is getting rather lengthy, but one more thing - you said your migraines got much better after treating the Grave's with MMI and also a bit better postmenopausal. I'm postmenopausal and the migraines are slightly better (up and down) from when I was peri-menopausal (a few of those years are a blur of being in a dark room with ice packs and having to pull my car over to throw up, then lie down in the back seat - horrible!). But still not great. Maybe because I've been running a bit closer to the hypO levels my head / system is still not happy. Another day, a few more clues...

What I hear is there is a definite “female hormone” component to the migraines.
Check your ingredients to the sensitive toothpaste.
Possibly, try a natural toothpaste. Or one with baking soda.
I am not positive, but if you drink reverse osmosis water (which is great) it takes out the important minerals we need. Check for these deficiencies. I bet magnesium might be an issue like MM said.
Lastly, have you tried any biofeedback? It is a way to calm the mind. It helped me through my panic/anxiety attacks.
Hope these tips are helpful. Hang in there!

HyperSally,
I just thought of some other triggers.
Carpeting. The glue and chemicals they use can be a trigger.
What type of pot-ware do you use? Aluminum? Stainless steel would be safer.
Storage for food. No plastic. Glass containers are best.
Laundry Detergent and Softeners. Look for natural, scent free, dye free.
There are so many pollutants that trigger migraines and our thyroid.
Some scents are too much. I even changed my husbands soap to the handmade natural almond soaps made by Sappo.
Also, underarm deodorant - I use baby cornstarch instead. (It’s not the baby talc powder)
Depending on where you live, there might be something outside that might be triggering them.
I wish I could be more helpful.

Hi:

My last house had carpet and thankfully this house I am in doesn't.

To add what Still says I use glass, ceramic, stainless steel cookware and dishes.

Laundry soap is usually home made with using a goat milk soap bar plus washing soda, borax, and baking soda. Vinegar is used in place for the fabric softener and organic wool balls in the dryer.

Brands I have used for Laundry and household are:

Biokleen, Seventh Generation, Molly's Suds, Charlie's Soaps, and Organic Green Shield.

Brands I have used on my body and hair:

Vermont Soapworks, Alaffia, Silver Botanicals, Dr. Bronner's, Heritage Products, organic Sunflower oil for my face/body, Safflower soap and hair from AZ Sun Gold that uses saponified Safflower oil.

I am working to avoid products containing Oxalates and Salicylates so it means I have to avoid mints, cinnamon, cloves, aloe vera, olive and coconut oil, etc. that are used for the mouth/body products.

So far so good now that I see how it is for me as I change over to the products that will not cause me problems. Some of them aren't an issue and some really are depending on how heavy these are in the products. But definitely avoiding scents and dyes are important.

These are ideas with the products names thrown out there for your own research purposes to figure out for yourself. :-)

{{{hugs}}}

P.S. The tree nuts free products is what I am thinking of to use for avoidance of products containing oxalates and salicylates.

Forgot a BIG one.....Lighting. I found that the natural light from Reveal bulbs were best but they are discontinuing those bulbs. (I hate that!) Flourescent lighting is not good. LED with a Reveal shield glass is not too bad.
Certain lighting is a definite trigger for migraines.