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988694 tn?1332359479

Cluster Headaches and Hypothyroidism

Hello All. I was wondering if anybody in this forum suffers from cluster headaches. I started with the pain about 8 months ago.  This kind of headache is usually  a sharp pain in one side of the head along with runny nose, stuffy nose (one side) and tearful eyes.

I have been to many specialists because of this daily and unbearable pain, none one knows why I got them since everything is normal according to them. I have an appointment with a neurologist in some weeks to see what he says.

I started thyroid replacement 3 years ago and my headaches had gotten much better until 8 months ago when I started to suffer this cluster headache.I have been doing some research online and nothing relates clearly this kind of headaches to hypothyroidism,although it is known that can be caused by the  hypothalamus.

I did some research in this forum to and there was nothing mentioning this kind of headaches which are much more worse and often (daily for me) than migraines or other kind of headaches. I keep thinking is hormonal, but my doctors do not pay me any attention.
My TSH is suppressed, my frees in the upper range and my reverse T3 way too high. However, when my doctor tried to bring it down by adding T3 only medicine, I could not tolerate the palpitations and extreme anxiety and went back to NT and Synthroid. I have no idea how to bring my reverse T3 down without going on T3 only...my doctor is not versed in reverse stuff.

The pain that I have been suffering is outrageous, so much that my doctor got scare when I said that I was thinking about ending it all. Believe me, it is too much. I cannot study, go out, relax, nothing, forget about having a drink...yo don't know when is gonna come and alcohol makes it worse.

Any experience with cluster headaches and maybe relief by proper thyroid replacement? Thanks!
18 Responses
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988694 tn?1332359479
Thanks both!

If anything good comes out of my experience, I will post it in this forum since I don't get to hear  a lot of "feeling good" stories. A
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Avatar universal
Thanks
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1756321 tn?1547095325
I not that familar with all the brands in the US (live in Australia).  If i find a product online it is usually only available in the US grrrr lol so i'm surprised to hear that it's hard to find a good magnesium product. Maybe they are only available online?  I bought a product called Nature's Own - 500mg magnesium chelated with amino acids to correct my severe magnesium deficiency. It took about 3 months for my 50 + symptoms to resolve (calcified mitral heart valve looks permanent though) but i noticed an improvement within the first week. :)  
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988694 tn?1332359479
Thanks for all that info, I did not know what I am taking. Do you take any magnesium? extracting for the info you provided, is there any brand you would recommend? I am willing to try different ones since for what I have been reading some work better in some than others. Thanks!!
Helpful - 0
Avatar universal
Where or what is the best source or supplement etc that contains magnesium glycinate?

Seems everything I find has oxide or sulphate.
Helpful - 0
1756321 tn?1547095325
I had a look online and found Nature Made contains magnesium oxide.  Magnesium is not commonly tested so it's no surprise if you cannot find this test in your labwork. The form of magnesium measured will be stated on the labwork.  I forgot add the word magnesium after RBC.  RBC alone is a different test that tells how many red blood cells you have. Good luck :)

Excerpt from Dr Mark Hyman's article - "Magnesium: The Most Powerful Relaxation Mineral Available"...

• The RDA (the minimum amount needed) for magnesium is about 300 mg a day. Most of us get far less than 200 mg.

• Some may need much more depending on their condition.

• Most people benefit from 400 to 1,000 mg a day.

• The most absorbable forms are magnesium citrate, glycinate, taurate, or aspartate, although magnesium bound to Kreb cycle chelates (malate, succinate, fumarate) are also good.

• Avoid magnesium carbonate, sulfate, gluconate, and oxide. They are poorly absorbed (and the cheapest and most common forms found in supplements).

• Side effects from too much magnesium include diarrhea, which can be avoided if you switch to magnesium glycinate.

• Most minerals are best taken as a team with other minerals in a multi-mineral formula.

• Taking a hot bath with Epsom salts (magnesium sulfate) is a good way to absorb and get much needed magnesium.

• People with kidney disease or severe heart disease should take magnesium only under a doctor's supervision.
Helpful - 0
988694 tn?1332359479
When I first started treatment I started with 25 mcg of Synthroid and 5 of Cytomel. When my doctor increased my Cytomel in 5 mcg, I could not tolerate it and dropped the whole thing. We started over and he put me on NT, we started to build little by little up to 3 grains.

With 3 grains my numbers were:
TSH: 0.01    0.4-4.50
Free T4: 1.2  0.8-1.8
Free T3   2.9  2.3 -4.2
Reverse T3: 38   11-32

If you notice my reverse was high with a ratio of 8. That is when we put me on Cytomel again and decreased my NT not to 2 grains but to 1.5.

So with 1.5 of NT and 37 of Cytomel my FT4 was a the bottom and FT3 in the upper range and ratio for Reverse was 15 or so.

Then the other results with everything high is the last I posted. My doctor reduced 1/4 of grain. Now, and for 7 weeks, I am taking 2 grains of NT and 100 of Synthroid. It is incredible how Synthroid bumped my FT3 and FT4 up, something that NT could not do. Let's see if it will stay that way, I mean normal high.

Any ideas in how I could reduce my reverse without doing the Cytomel experiment again?  I am very afraid to do it again and have all those palpitations which I still have, but not so hard and often. Thanks!!!
Helpful - 0
988694 tn?1332359479
Thanks, I had already gone to the STTM site and I could not order since is not allowed in the state I live in:(

But I did a lot of reading online and I went this morning and bought a bottle of magnesium. I was not sure how much would be okay, but I got 400 mg which is 100% of the daily value and the pharmacist said that it was exactly what I needed. I wanted to buy the Natural Calm, but it is not in stores.

I was reading and found out that there are many types of magnesium supplements and mine does not specify any type, but that is better because I get confused. The one I got is Nature Made.

I was checking last night my labs from all these years of testing and I did not see anything with the name of magnesium. I saw something with SER, serum, but I don't think is the same. I do have lots of RBC. I am wondering if a magnesium test is named magnesium or goes differently...
I had my first pill today. I read that I should notice if it is working right (the right dose) when my bowels are getting loose.

Thanks and wish me luck:D
Helpful - 0
Avatar universal
Let me try to get this straight.  I may be missing something.

So your initial test showed:

TSH: 2.3
FT3: 2.1 (2.3 -4.2)
Ft4: 0.9  (0.8-1.8)

Which shows BOTH your Ft3 and FT4 to be at or below the bottom of their ranges.  

Then your prescribes 2 grains Nature Thyroid PLUS 37 mcg Cytomel and that resulted in:

TSH: 0.01    0.4-4.50
Free T4: 0.8  0.8-1.8
Free T3   4.2  2.3 -4.2
Reverse T3: 28   11-32

That is your FT4 remained at the very bottom of the range but the FT3 went to the max of the range;

Then your Dr changed to; taking 100 Synthroid and 2 and 1/4 grains NT.

So the Dr removed all Cytomel.

After a month in this dose resulted in:
TSH: 0.01          0.4-4.50    
Free T4:  2.2        0.8-1.8
Free T3:  5.2        2.3 -4.2
reverse:   58         11-32

Which put  BOTH FT4 and FT3 above range.

You mentioned that your Dr reduced your NT. How much NT are you taking now?
Helpful - 0
1756321 tn?1547095325
There are online labs that do not need a doctor's prescription.  Stop the Thyroid Madness has an article: "Recommended Labwork" that lists a few of these labs.  You may want to try magnesium supplements to see how you feel.  Test wise, RBC (red blood cell), ionized magnesium or buccal smear magnesium tests are recommended over serum magnesium.
Helpful - 0
988694 tn?1332359479
It has been 7 weeks since my doctor cut back my dose. I will test next week and meet with him the following week.

I do not have the original tests with me, but I know what my number were.
The same ranges above and

TSH: 2.3
FT3: 2.1
Ft4: 0.9

My doctor just started to check my reverse this year. Also, my TSH varied through the years, I would go from 1.3 to 4 or 5 something when I started to take the birth control pill for example. But without the pill and taking nothing it was what I put here.

I just want to say that the headaches started when my frees where both in middle range and we thought with my doctor I was hypo. That is when he tested reverse and started with the T3 regime which, by the way, did not stop my headaches. Thanks!
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Avatar universal
Well your last results have you over the range on BOTH T4 and T3.  So that would be possible to be hyper and a common hyper symptom is anxiety and nervousness etc.

Since NT has both a T4 and a T3 component. So cutting that back would seem to make sense to help lower both back some.

Your first test listed above is very interesting.  I don't think I can recall seeing on this site a very bottom FT4 and a high top end FT3.  But you were getting a lot of T3 with both NT and Cytomel.  

How long has it been since they cut back on the NT or when are you scheduled for another blood test?

Do you have any original tests and what you started out on for medication?
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988694 tn?1332359479
Sure,

Back in November I had these results, I was taking 2 grains of NT and 37 mg of Cytomel. I felt very nervous and anxious and could not concentrate, I had constipation, hair loss, bleeding before period, and the usual headaches:

TSH: 0.01    0.4-4.50
Free T4: 0.8  0.8-1.8
Free T3   4.2  2.3 -4.2
Reverse T3: 28   11-32

I started then taking 100 Synthroid and 2 and 1/4 grains NT. After a month in this dose:
TSH: 0.01          0.4-4.50    
Free T4:  2.2        0.8-1.8
Free T3:  5.2        2.3 -4.2
reverse:   58         11-32

My doctor reduced after that result my NT. Thanks!!
Helpful - 0
988694 tn?1332359479
Thanks!! I was reading online and you could be right. I am losing weight because I do not feel like eating. Plus my urine smells weird.

I made an appointment with my neurologist but doesnt have anything available until two more months and I need some relief now. I would like to be tested for magnesium without a prescription...do you know where I could do that?

I read that also melanin is good for cluster headaches. I also have sleep apnea whir worsen my condition. Thanks!!!

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Avatar universal
Could you please post your latest lab results along with their reference ranges.
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1756321 tn?1547095325
Scientific evidence shows that magnesium can help prevent and treat migraine and cluster headaches. There is a book on the subject: "How to Use Magnesium to Prevent and Relieve Migraine & Cluster Headaches Naturally" by J. S. Cohen MD. Chelated magnesium has an absorption rate of 40%; magnesium oxide (the cheapest form available) has an absorption rate of around 4%.

Excerpt from "Are You Magnesium Deficient?" from Health Dimentions:

"A magnesium mineral deficiency may cause the following symptoms:

* Nervous anxiety
* Depression
* Constipation
* High blood pressure
* Sleeplessness
* Muscle weakness, cramps and spasms (this one is a definite sign of magnesium deficiency, possibly even calcium)
* Premenstrual Syndrome
* Hearth rhythm irregularities/ angina
* Cravings for chocolate and caffeine (which also causes the body to lose more magnesium)
* Back pain
* Headaches, cluster headaches, migraines
* Stiff and aching muscles
* Bones and joints that need continued chiropractic treatment
* Hypoglycaemia
* Diabetes
* Nervousness
* Hyperactivity
* Osteoporosis
* Kidney stones
* Attention deficit disorder [ADD]
* Adrenal exhaustion/chronic fatigue syndrome
* Exhaustion from exercise"
Helpful - 0
988694 tn?1332359479
Hi and thanks for your response.

answer #1 : Yes, I was initially taking 3 grains of NT. At that time my Ft3 and reverse T3 ratio was 8. He decreased to 1.5 grains and added 37 mcg Cytomel, all this in the course of three months. My Ft4 was 0.9 which is at the bottom of the range and where has always been when I am not taking replacement. After three months of adding Cytomel slowly, my ratio was 15.

answer # 2: 37 mcg of Cytomel. As I mentioned before it was all achieved by adding and decreasing every two or three weeks.

My ratio now is 9.

I thought that in a period of three months of adding Cytomel I should feel a little better, but I had horrible muscle pain, my hair was falling out in clumps (still falling) and the palpitations and anxiety where too much, I could not even sleep.

I remember when I first started treatment I was on Synthroid and Cytomel. I needed a lift and my doctor added just 5 mcg (I was taking 5 mcg already) of Cytomel and I went nuts with the anxiety, palpitations and horrible itching. I had to stop all together and start over with Naturethroid.  

Since I started with the headaches, 8 months ago, I became constipated and lost lots of weight. How can I be constipated with my frees in the upper range?

My doctor has never mentioned adrenals although he tested my cortisol once (blood, one morning draw).

Thanks!!  A.

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Avatar universal
Question #1:  Did the Dr reduce your T4 medication when he added the T3 medication to try to deal with the Reverse T3 issue?

Question #2:  How much T3 was added?  Reasons why I ask is that many people can only tolerate small increases of T3 medication and must work up slowly.  It seems most people that have problems tolerating the addition of a T3 seem to be when the initial dose from nothing previous was starts at about 10 mcg and more problems if more than 10 for an initial dose.  Some people even have to start with as little as 2.5 mcg per day.

Reverse T3 is only made as far as I know by the conversion process of T4 into T3.  So this might be another reason to consider reducing the T4 med as well as possibly adding a T3 med or in combination.  The less T4 there is to convert into RT3 the better or at least that is the theory.

Another thought that you may consider if adrenal testing.  Adrenal's can also affect the conversion process and thus RT3 issues.  I have no idea if headaches like you describe are associated with adrenal issues.  Long time Hypo sufferers sometimes have adrenal fatigue as they try to make up for the lack of Thyroid.
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