ME, Thyroid, Hormones, Migraines - connection?

@Jonathan Edwards
@Invisible Woman
@Maria1
@Jan
@MsUnderstood
@Bill
@Daisybell

We started discussing this on my Introduce Yourself thread, and it's time I tried to be sensible and get a bit sciencey, in my limited way.

So, several of us have similar stories of migraines, thyroid problems, and hormone deficiencies, which we've addressed and rectified in hopes of improving our energy and general health. Alas, to no avail.

I know that thyroid, adrenal and sex hormone production are 3 corners of a triangle, and all impact on migraine occurence.

But idiotically, my neurologist, gynaecologist and endocrinologist have never looked at me as a complicated organism, with interlocking parts, but as "territory" that are their sole provenance, and other, "foreign parts" that are the domain of colleagues.

It's infuriating. And the last 2 weeks, despite being slim and eating healthily, I'm suffering from what seems like hypoglycaemia.

I'm very interested in what @Jonathan Edwards said about the underlying autoimmunity in Hashimoto's causing the ongoing symptoms despite treatment.

But I have an interesting thing - a few years ago my results came back normal for anti - thryroglobulin antibodies. Do I still have Hashimoto's? I've no idea!

So, people. Ideas? Theories?
And, vitally, are we all treating our migraines optimally?

 

@Squeezy

I have never had migraines. I have had 30+ years of brain-fog (that sometimes feels like a dull headache), but acute and painful headaches are very rare events with me.

As I have mentioned in other threads, when my fatigue started worsening about a year and a half ago (going from a burden that I could manage through grit, to nearing incapacitation), I ended my physician-avoidance mode and started pressing to see if there were any co-factors in the rebounding fatigue. I had 4.

• My testosterone was low. Just barely inside what the US medical establishment considers "normal." This was killing me. It took pressure (against resistance) to get TRT therapy, and it was a boon! TRT did not erase CFS, but it literally felt to me that a burden had been lifted off my shoulders. Brain-fog (while still present) was reduced, and I could at least function physically. Prior to TRT, I was starting to feel panicked that after many decades of being able to "manage" CFS, that I was headed towards incapacitation. TRT reversed that for me.
• My thyroid levels were in low end of normal. Again (after first starting TRT) I pushed for treatment. I'm due for a blood test soon that I expect will confirm my FT4 and TSH are near optimal. For me, the thyroid medication (now 137 mcgs of Levothyroxine) was of a mild benefit but has been more subtle than the profound benefits of TRT/
• Vitamin D3 and B12 were low. I've supplemented these and the effects are hard to judge.

The other co-factor (which isn't directly related to the endocrine system) is sleep. I feel like ever since coming down with CFS in 1984 that my sleep has been thrashed. It has never felt restorative, refreshing, or deep. Plus, I've been prone to jags of insomnia.

In the summer of 2016, my Internist ordered a sleep study that showed I have sleep apnea, so I got an outstanding APAP machine (ResMed AutoSence 10 AutoSet). At first, I noticed I was sleeping better. I downloaded a highly-advanced (free) software program, called Sleepyhead, that allows users to see the wealth of information and data-charts that these machines are capable of producing and joined a forum where expert-users helped me tweak my setting based on the data. I was liking this (despite the mask and tubes and unsexiness of it all).

But after a while the therapy started going south. Because I was looking at my charts (almost daily), I could see that while the APAP machine was dealing with the simple "Obstructive Apneas" (where one's breathing pathway narrows or closes), that I was one of those people who have what are called "Central Apneas" (where the brain stops telling the body to breath) start to increase as a result of using APAP machine.

Only because I was on top of my data, and had a support community to consult with, did I realize that the top-of-the-line APAP machine I was using was not going to provide proper therapy.

So (again) I pushed and got approved for a very advanced (read expensive) machine called an ASV (ResMed AirCurve 10 ASV). It has been 3 weeks on ASV. Although I had a few rocky nights getting adjusted (the machine learns your breathing), I have had very astonishing deep and restorative sleep over the past few weeks. What a difference!

While I'm sure my condition having Central (or Complex/Mixed) Sleep Apnea is almost certainly atypical for those with ME/CFS, I do wonder how many of us suffer from poor and unrefreshing sleep? I also wonder how much damage we do to many areas of our health, including our Endocrine system, when we have bad sleep. I'm guessing (with no medical knowledge to back it up) that it is a significant problem.

With two weeks of restorative sleep (something I never expected to experience again) I am rebounding. To have CFS with a good night's sleep (something I wasn't sure was possible) is a manifestly easier condition to live with that with the rubbish sleep I was used to getting.

I feel like I'm coming back. Good sleep is pushing CFS into the background. I'm feeling very hopeful!

Best to all (and sorry I got so long),

Bill

 

@Squeezy I have no ideas, or theories. I have the same question you asked above about Hashimotos.

I do have anti-thyroglobulin antibodies, but my number was described as being in the "normal range". I would have thought you either have them, or you don't. Does everyone have anti-thyroglobulin antibodies, and does a patient needs a certain level before having their thyroid issue labelled as Hashimotos? Or, am I still early-stage? Might my anti-thyroid antibodies increase with time? I not asking for medical opinions here -- just speculating.

What I can say is that every time I've gone off my gluten-free diet, my TSH rapidly and dramatically goes up. And, when I return to my typically-spartan diet, my TSH goes back down. Does this mean that in my case, gluten is attacking my thyroid rather than the lining of my small intestine as in celiac disease? Again, just wondering.

I don't refer to my headaches as migraines, because I'm sure those with migraines suffer much more than I do. All I can say is that adopting a low-histamine diet has reduced the severity of my headaches, and also my tinnitus. My husband does experience migraines, and he is also helped by reducing his consumption of high-histamine foods.

 

I think Dr. Jeffrey Dach has written very good articles on Hashimoto´s here. I was diagnosed with autoimmune thyroiditis /Hashimoto´s 23 years ago, and I wished that I had had those articles at that time. He is clearly very knowledgeable and experienced re Hashimoto´s.

 

Again I don’t have any answers but it is interesting you should start this thread now- I was just thinking today that I am sure there is a link between my migraines and my ME/CFS. Not sure about the thyroid stuff.

Before a migraine I get overwhelmingly sleepy. It’s different to my ‘normal’ fatigue, and it’s actually quite nice, a cosy sort of sleepy feeling. I rarely think it means a migraine is on the way, even though it always is; I just enjoy the sleepy feeling, and sleep.

I’m 50 now, and started getting migraines suddenly at around 30. I had a year off with no migraines at all during my first pregnancy. They were generally linked to my menstrual cycle, but I would have times when I was getting them pretty constantly, with more days suffering than not. I took topirimate for a few years which helped the migraines (and was great for weight loss), but I came off it a couple of years ago, thinking my cfs might get better without it. It didn’t.

My neurologist recommended having a mirena put back in before tapering off the topirimate (I’d had the mirena removed thinking it was worth a try to decrease cfs symptoms). My migraines did seem worse without the mirena. I had about a year when migraines weren’t too debilitating, with no treatment except sumatriptan and painkillers.

So I’m now off topirimate, with mirena, and pretty much post menopausal I think. My migraines have been getting worse again over the last few months. Migraines have always been left sided, with some pain down my arm. Now my left arm goes increasingly heavy and achy with migraine and my left arm is weak and painful all the time. My gp has referred me back to neurology and I’m resorting to codeine at times for the migraine pain (which is working, but I don’t like as a long term option).

I got excited about seeing a menopause specialist, thinking she would test my hormone levels so I might get some answers. However she didn’t test anything, just said that HRT might be worth a try!

I think I’m going to have the mirena removed too- see what happens!

I agree it would be great if all these aspects could be looked at as a whole- I suppose that would be ME specialist- and the only one of those I ever saw wasn’t interested in any of it!

 

Hi @Maria1,

I've read that post menopausal women do far better using bio identical progesterone than traditional estrogen HRT. Particularly with migraines!

Most women who have migraines get a respite during pregnancy like you did due to the high levels of progesterone at that time!

If you have the Mirena removed, you will lose the steady feed of low amounts of artificial progesterone, and you might provoke an increase in migraines. Please think carefully.

I also take Topirimate, and I'm so grateful for it. I lost 3 stone of weight I'd gained on anti depressants, and most importantly, it reduced the number of attacks, and slowed my instantaneous, lightening strike migraines down.

Before, I had no chance to take a triptan medication to prevent the migraine blossoming into full agony. Now, I do. I'd be terrified to come off it and go back to daily hell!

Your left arm pain sounds dreadful - I'm very glad you're seeing a neurologist to get that looked at.

Feeling delightfully sleepy as a migraine warning sign would be so hard to discern from regular 24/7 sleepiness! A much nicer experience than my ice pick through the brain warning sign, though!

 

Its funny how there are seemingly links in groups of symptom sets or diseases as we're joining our own dots.

I'm a migraine sufferer first, ME second. First come first served basis; but the links i've often pondered are migraine, ME, POTS, hole in heart, EDS and raynauds.

At my migraine group, the co-morbidity link is commonly migraine, hole in heart, raynauds and hypermobility (undiagnosed possible EDS) though a couple of them have ME too.

My cousin has ME, migraines and hypermobility. I wish we could see statistics on disease groupings to see what are the most common links.

 

@MsUnderstood Great food for thought!

A low histamine diet is the only one I haven't tried! I bet it feels empowering to find something that works so well for you both. I'm inspired.

I stopped eating gluten a year ago, and my dodgy digestion improved dramatically. But I did so to improve my thyroid health - the foremost autoimmune expert here in Israel highly recommends that Hashimoto's patients stop eating gluten.

From what I gather, those of us who don't have celiac are still likely to be sensitive to gluten. It's to do with getting a leaky gut from being sensitive to gluten, the autoimmune system defending against this, and gluten protein structure looking like thyroid tissue.

Your body goes on red alert after too much gluten exposure and starts attacking anything that looks like gluten. Oops your thyroid does! Pow pow!

@Helen thank you. Dr Jeffrey Dash explains it with the proper sciencey language.

Amazing, your clear response to gluten. I'd hazard a guess that it is interfering with your production of T3. This goes down when you eat gluten, so your brain sends more Thyroid Stimulanting Hormone (TSH) to tell it to step up production.

We'll have to look up the anti thyroglobulin question. Tomorrow...

 

Wow Bill! Please God by me!

A decent night's sleep! To wake up feeling refreshed! Ohhhhh...

I wish I snored, so I could reap the benefits of a sexy Darth Vader mask, but alas, I just sleep next to a wretched snorer... Might be half my problem.

I can only imagine how incredible it must have felt when your TRT levels came up. To feel the revelation that THIS is what you'd been missing!

I'd hoped that because I had absolutely no progesterone, and no DHEA, that I'd have to feel even a little better when it hit normal.

But no. I kept thinking that if I could get all my hormones, B12, (I've a devil of a time maintaining it), and the rest at optimum levels, it would improve things. But now I think it won't matter a jot.

Because if my energy making pathways are broken, or my body is hibernating, or whatever ME theory, I CAN'T FEEL BETTER!

Because I can't make energy anyway.

So, with you feeling so much better for correct TRT, and good sleep, I'm thinking hopefully you don't have ME at all, and will get stronger and healthier now, liberated from 30 long years of suffering.

 

@Hell..hath..no..fury... Those are groups of co-existing conditions I'd not think to put together!

Thankfully, I'm not afflicted with any of those. I'm pretty flexible, but definitely not EDS. Can't believe you've got that too!

There's probably somewhere to find this info...

 

I, too, get those dull headaches, but also migraines. Until recently I didn't realise that they were connected so am sharing my experience with you as you may be missing a useful treatment. You may not initially see the relevance but bear with me.

Like @Maria1, my migraines are strongly associated with my menstrual cycle. Either just prior to or coincident with day one of my cycle, it would be 'grab a duvet and pray for death' for the next three days. After many years of putting up with them, I finally managed to get sumatriptan from my GP and life was so much more bearable.

In the last few years, the migraines have gradually decreased in intensity and then about a year or so ago they abruptly shifted to about the 10th day of my cycle. At the same time, the dull headaches, which I've had off and on since I was 21, settled in for one or two weeks prior to the migraines.

The pattern was new but other than timing, there didn't seem to be any connection to the migraines. The migraines are leftsided, with a sharp pain behind the eye and with pretty severe nausea. The dull headaches are felt on both sides with only very mild nausea but they haven't responded at all well to NSAIDs.

A couple of months ago, the pattern of the dull headaches changed to coincide much more strongly with the first few days of my cycle. Then they would dissipate and the migraine would come about a week later. It was at that time that I started to wonder if there was a relationship between the two headaches. Obviously, there was the nausea (but to very different degrees) and the ineffectiveness of NSAIDs, but what clinched it for me was the impaired brain function and the exacerbation when I tried to do anything that required much concentration. That's a very migraine like response.

So this month, I took sumatriptan for the dull headache. It worked.

If your headaches are anything like mine, you'll probably agree that the pain is annoying but completely bearable. It's what you refer to as the brain fog that is so disabling. (I think of b.f. as something else.) You may find sumatriptan gets rid of that brain fog.

For further reading, you might like to start here and here. I wasn't explicitly thinking about Baraniak when I was toying with the idea of the dull headaches being a type of migraine but I did read these articles a few years ago and they were in the back of my mind.

Hope this helps.

 

I wish. But my CFS (with PEM) is pretty classic and it hasn't gone away. Dealing with secondary issues and (especially) getting sleep makes it much easier to endure. That's for sure.

It's been 33 years. I was 26 and as fit as could be when this came out of the blue. Fix things around the margins isn't a "cure," but--until we have one--it's the best option I can see.

Hope you feel better soon.

Bill

ETA: Maybe send your partner in for a device so you can get some sleep. My wife is very happy not to hear my snoring anymore (it is gone). She is sleeping better, and it is a health issue for your partner as well.

 

Forgot to mention that my migraines now seem to be activity induced. I thought I had stopped getting PEM for a while, but now I now realise that I get a migraine after any busy times, or if I’ve been overdoing it physically.

Previously my PEM was more an increase of symptoms, muscle aches, increased fatigue, generally even more wiped out physically and cognitively. Thinking about it now, it’s possible all those ‘old’ PEM symptoms are still there underneath the migraine, it’s just that the migraine is so painful it detracts from feeling anything else.

 

I don't think I know anyone who has described their migraines almost exactly the way I do mine! I'm SO GLAD you finally got the medication that helped.

I also get headaches a lot, and feel brain fogged and unable to concentrate. But as it's highly inadvisable to take triptan drugs on more than 9 days a month, I reserve them for migraines.

I don't bother with NSAIDS or any other painkiller because of the risk of pain medication overuse rebound. If you use them for 15 days in 3 consecutive months, you run the risk of CAUSING headaches!

Insane. Unfairness piled on unfairness.

Naturally, my GP and neurologist didn't inform me of this. Thank God for the Internet. Moron doctors.

 

@Bill I got over-excited there, didn't I?
But heck, feeling better because of hormone and sleep intervention is the holy grail to me!

I'm still delighted for you feeling so much improvement in your quality of life.

I totally left out SLEEP as a vital factor in my condition.

My husband has done the sleep study route, and couldn't sleep with the machine. The sleep doc said his snoring wasn't depriving him of oxygen, he's perfectly safe. Unless I crack.

I can hear it through ear plugs, that dampen a lot of noise. When my daughter goes back to college tomorrow, I'm gonna sleep in her bed, and see if I get through the night!

Otherwise I'm getting myself to the sleep doc.

 

@Maria1 Me too! My migraines are mostly triggered by overdoing it! Not any of the usual migraine things like foods, or smells - which I'm very sensitive to, and might contribute.

My migraines began a year after my ME diagnosis, and although I do occasionally get them when I'm at home talking to no one, not using my brain, or moving about - those things, if engaged in beyond the clear warning signs, will result in my personal PEM of a migraine!

It happens not only physically, but mostly mentally. Using up too much brain energy with social interactions gives me vicious pain.

I dearly hope you don't suffer from this.

 

There are several kinds of antibodies affecting the thyroid. In people with hypothyroidism (or who are heading for that condition), my understanding is that any of the following can be true :

Both TPO antibodies + Tg antibodies can be negative.

TPO antibodies can be positive and Tg antibodies can be negative.

TPO antibodies can be negative and Tg antibodies can be positive.

Both TPO and Tg antibodies can be positive.

Antibody numbers fluctuate a lot. A negative result can't be taken as gospel truth, but a positive result is always certain. Once someone has a positive result there is no point in testing again unless the patient has tried supplements or dietary changes to try and reduce their antibody numbers and they want to monitor the effect.

If either TPO or Tg antibodies are positive then this indicates that the patient has autoimmune thyroid disease (UK name) aka Hashimoto's Thyroiditis (US name). For more info on thyroid antibodies this is a good starting place :

Thyroid Antibodies: The Test

Hope this helps.

 

Thanks @Arnie Pye

In my case, I was diagnosed on the basis of a high level of TPO antibodies 14 years ago.

Apparently, it's OK to have a very low number of TPO anti bodies, it's not all or nothing. I've read that this doesn't warrant retesting regularly or keeping an eye on.

I just read this:

https://www.ncbi.nlm.nih.gov/m/pubmed

BACKGROUND: A number of studies show that the serum levels of antithyroid peroxidase antibodies (TPO-Ab) in patients with Hashimoto's thyroiditis decline during levothyroxine treatment, but do not provide quantitative data or report the fraction of patients in whom test for TPO-Ab became negative ("normalization percentage"). The objective of the present study was to provide this information.

CONCLUSION: Serum TPO-Ab levels decline in most patients with Hashimoto's thyroiditis who are taking levothyroxine, but after a mean of 50 months, TPO-Ab became negative in only a minority of patients.

OK, so I might be quite normal in normalising after 14 years of treatment, if TPO ab level drop and drop and drop!

I really want to dig to find out my official autoimmunity status regarding this, because I don't know when I'll see an endocrinologist again - and who knows if I'll get an accurate answer when I do.

 

Sorry for the late response (I somehow missed the alert).

I had another unbelievable night's sleep last night. It is the loveliest of warm autumn day's here, so feeling good I've been out working in my garden. I'm slow and I take rests, but I'm moving (and in no fear of a crash).

I was spiraling down so badly that fixing ANYTHING was the holy grail for me. Getting good sleep (something I did feel would be possible having CFS) lightens the load of this illness considerably.

As to your husband, none of my business, but I'd want to see the sleep study. Did you get a copy? I'd be very skeptical that he's getting proper care if he's snoring so loudly that you're planning on leaving the marriage bed. This is not normal. Also, few people sleep easily during sleep studies in an unfamiliar place (or even with home studies) loaded up with wires, sensors, monitors, and a mask.

There is an adjustment period using CPAP type equipment. My advice is to revisit the issue and get a copy of the sleep study.

As to your sleep study, I had no idea I had sleep apnea. It is pretty common. A well-adjusted machine with a comfortable mask can make for a big improvement in sleep from my experience. It is least something that's worthy of ruling out IMO.

Bill

 

I missed this thread to start with.

Let me make a few comments.

I am not sure that hormones form a triangle. Thyroid, adrenal and sex hormones are all controlled by cells in the hypothalamus and pituitary but different cells. It is a bit like the toothpaste and painkiller counters that both happen to be in the drug store. If you run out of either you may get toothache but there is no particularly good reason for the toothpaste shop assistant to sell painkillers too. If you run out of toothpaste, you need toothpaste etc. ...

And the main point that interests me is that the problem is not that each physician is missing the other hormones, it is that the symptoms are not due to hormone imbalance anyway, even if they are associated with an illness that also affects hormones. The establishment physicians just go by what is scientifically known about the hormones. The private 'hormone specialists' go by their pseudoscience of hormones. Both of them miss the point. I think Jeffrey Dach is a good example of the latter. His site is all pseudoscience, muddling up hormone levels with antibody effects. Not surprising everyone gets confused!

Thyroid antibodies are very confusing because they are only indirectly related to hormone levels. They are often very high at the beginning of the illness, so going down probably has nothing much to do with treatments. Thyroid peroxidase antibodies are particularly associated with overactive thyroid glands and thyroglobulin antibodies with underactive, but there is no strict rule. All normal people have some thyroid antibodies and quite a few normal people have high levels, so they are no use for making a diagnosis of thyroid disease. If a diagnosis of thyroid disease is made on clinical signs and hormone levels the presence of antibodies makes it likely that there is no other cause - that is about all.

The actual levels of antibodies tell you nothing about how well the thyroid is doing in terms of hormone production. There is no need to bring the antibodies down to get hormones right. If the thyroid is underactive all you need to do is take hormone supplements. If it is overactive you need to reduce its activity by radio iodine or surgery or a drug like carbimazole.

The factor that I think is missed is that thyroid autoantibodies unpredictably cause symptoms in their own right. In Graves' disease this is well known. The eye bulging is due to antibodies and nothing to do with thyroid hormones. In Hashimoto's disease it has been recognised for decades that patients feel lousy right at the beginning before lack of thyroid hormone has built up effects on tissues. I strongly suspect that just as antibodies make joints hurt in RA and give kidney trouble in lupus they make people feel ill with Hashimoto's even if their thyroid hormone level is fine.

What this means is that all the stuff about natural thyroid and fiddling about with doses of T3 etc is a waste of time because it is not relevant. If the TSH is normal or low then there is enough active hormone to bind to receptors and suppress TSH. There is no such thing as inactive hormone that suppresses TSH as far as I know because 'active' means binding to receptors.

People may be puzzled by the fact that the antibody levels do not mean much. But note that all the antibody test shows is that antibodies bind to the thyroid protein. Whether a particular antibody causes illness will depend on exactly where it binds and each person will have a mixture of antibodies binding in all sorts of different places. I think of it a bit like my hand binding to my glasses when I clean them. In one place my grip allows me to clean the left lens, in another place it is better for the right lens, but in another place it puts a mucky fingerprint on both lenses and I have to start again. Each protein has scores of places for antibodies to bind so there is no way of knowing what will happen

The pity is that the real answer is that there are several unknowns, mostly relating to antibodies, so that we cannot be sure of a precise explanation. People like precise explanations but honest half explanations are more likely to be useful in practice.