Help from Sweden

[mistelaj]

Hi! Maybe someone can help me? 26 years old woman in Sweden. Have been sick since I was 13. Much worse since 5-6 years. Started with intestinal problems (constipation, sever reflux and IBS, prolapsed rectum, colostomy, now bacterial overgrowth, extreme bloating, indigestion, malabsorption, motility problems). I had menstrual problems since I got my first period. First extremely heavy bleedings and then amenorrhea for 8 years. Got my period back 2 years ago, with heavy bleedings, PMS, pain, ovulation problems, fibrocystic breast etc. My progesterone is like 0 and also my testosterone, but my estrogen is "normal". I hate the estrogen right now.. When it starts to raise around day 10 (sometimes earlier) I start feel like a hell and it goes on until my period starts, or rather until I have had my period... (and then everything starts again).

I have a lot of other problems. ME/CFS is the diagnosis, and my blood tests also shows central hypothyroidism (lab tests have been the same for many years, doesn't matter what I eat or do, and also my temps and pulse) My TSH is between 1-2, my t4 at most 10 (ref 12-23) and t3 in the bottom of the range or under the reference range. My resting heart rate is around 50 and my temp is sometimes 36,6-36,7 in the morning (but then I have had a lof night sweating), during the day my highest temp is 36,4.

I have extreme fatigue and lactic acid in muscles, extreme air hunger, shortness of breathing day and night, mucle pain, joint pain, lot of neurological symptoms (nerve pain, numbness, tingling etc), headache, chronic infections, eczema, increasing allergies, face edema, inflammation etc. I can't nearly stand on my legs some days. The breathing problems makes everything hard - eating, sleeping, lie down, sitting, walking..

I have improved my diet in a Peat style, I eat a lot more. Doctors gave my levothyroxine, also liothyronine, but everytime I try it it's like my thyroid shut down. I feel ten times more hypothyroid. Cold, pain, can't breath, losing my hair and my eyebrowns, depressed. Liothyronine totally knocks me down in a short while. I had a little bit more success with Nutrimeds thyroid, but still the side effects.

Progest-e raises my estrogen a lot when I try it. I have tried really high doses too. I don't know what happens, but my shortness of breathing gets unbearable after a short while after taking it. My breast get more sore and everything get worse. Maybe I just have to go on and hope the hormones get balanced after a while..

I wonder if someone knows why this happen with thyroid meds and progest-e? Any idea?

 

[TeslaFan]

My girlfriend had severe PMS issues, which have almost entirely disappeared after adding Activated Charcoal to her diet. I cannot promise it will work for you in the same way, but it is a cheap, easy and safe experiment.

I suspect that sometimes, certain toxins, including estrogen, accumulate and keep recirculating between tissue and blood, and using a chemical binder, such as charcoal, can help the liver in removing them. By reducing toxic load on the liver, body can be put in a better position to handle other challenges.

 

[Greg says]

Activated charcoal helped my girlfriend also. And I feel good taking it.

 

[mistelaj]

I have tried, started having much detox symptoms from it so I stopped.. Maybe I should try again.

But I guess I need progesterone and thyroid hormones too, because my pituitary gland or hypothalamus seems to not work..

 

[tara]

mistelaj
Sounds like you've been having a rough time for a long time, and there are lots of things going on. Hope you can find something helpful here.

How much levothyroxine (T4) and liothyronine (T3) did you take? I am not an expert on this at all, just read some here, but I have a couple of ideas -hopefully others more knowlegeable will chime in.
Too much T4 can sometimes have hypothyroid effects if the liver etc are not efficient at converting it to the active T3. Peat says that people vary in ideal ratio, but most people who need thyroid supplements do best with somewhere between 1:2 and 1:4 T3:T4. He usually recommends tiny doses of T3 throughout the day because it has a short half-life, and T4 in the evening - T4 has a much longer half-life.
A sudden increase in T3 can allow the tissues to take up a lot of magnesium in a short time, and leave too little in the blood. Peat has sometime recommended trying a dose of magnesium supplement along with the thyroid supplement, so you could try that if you wanted.

If you reacted badly to progest-e, I wonder if you are getting enough salt? Salting food to taste? I think progesterone can increase salt excretion, so if salt is low that could be an issue?

Everything is harder to fix if your gut is having trouble digesting your food and getting you the nutrition you need. I guess you've experimented a bit with figuring out which foods you can digest more or less easily?
If the constipation is an ongoing issue, you could try cascara sagrada - it tends to reduce gut inflammation, and aid transit. Dosage varies from person to person.
Some of us here use cronometer or similar sites to check whether we are eating all the nutrients we need. Won't tell you whether you are absorbing and using them, but it can be a start.
What is your diet like now? Have you figured out if there are aggravating foods you are best avoiding?

Have you tried any breathing exercises? May not be your key issue, but a feeling of air-hunger can be caused by chronic hyperventilation, lowering CO2 too much, so that the cells don't get all the oxygen they need. Peat recommends bag-breathing. I got improvements by retraining mouth and chest breathing to nasal diaphragmatic breathing. For me, I think getting more calcium into me helped with the breathing too, and probably eating more.

 

[mistelaj]

Thanks Tara!

Tried T3 + T4 in many different doses.. The problem is : Liothyronine knocks me down after just a short while, feels like I am going to die after an hour or maybe a half. Levothyroxine gives the same effectt, but maybe a half day later. I have tried them in very very low dose and also higher...same effect.

I am not sure about how much salt is enough.. I eat maybe 2-3 teaspoons a day. I am so confused about, because I have always had and have high sodium levels in blood. But maybe it's unrelated to salt intake.. They doesn't seem to change from changes in salt eating. I usually have always high calcium in blood too, even when I have eaten low calcium diets.

The problem is: all food give me problems. But the worst is high histamine foods. Can't eat fermented dairy for example and many fruits, also have a real honey allergy. I don't think I really agree with dairy, but I do better with it than many other foods so I drink non homogenized milk and eat mozzarella cheese. I am just confused about dairy, IGF-1, fibrocystic breats etc.

Right now my diet is mostly dairy, eggs, some butter, cooked apples, sugar, white rice and potatoes (still not sure about potatoes and my joints). I am trying to figure out what more I can add. Gelatin and meat have been problematic, but I'll try it again soon.

Breathing exercises are making me worse actually :-( It makes my breathing tired. The breathing problems are really severe. I think it's more related to some infection, or hypothyroidism. I am not sure.. Have an extreme tightness from stomach and up to neck. It has been like this nonstop for more than 5 years, started after I came home from India. Have always been doing yoga and meditation and I know how to breath, but can't :-(

 

[Mittir]

Thanks Tara!

Tried T3 + T4 in many different doses.. The problem is : Liothyronine knocks me down after just a short while, feels like I am going to die after an hour or maybe a half. Levothyroxine gives the same effectt, but maybe a half day later. I have tried them in very very low dose and also higher...same effect.

I am not sure about how much salt is enough.. I eat maybe 2-3 teaspoons a day. I am so confused about, because I have always had and have high sodium levels in blood. But maybe it's unrelated to salt intake.. They doesn't seem to change from changes in salt eating. I usually have always high calcium in blood too, even when I have eaten low calcium diets.

The problem is: all food give me problems. But the worst is high histamine foods. Can't eat fermented dairy for example and many fruits, also have a real honey allergy. I don't think I really agree with dairy, but I do better with it than many other foods so I drink non homogenized milk and eat mozzarella cheese. I am just confused about dairy, IGF-1, fibrocystic breats etc.

Right now my diet is mostly dairy, eggs, some butter, cooked apples, sugar, white rice and potatoes (still not sure about potatoes and my joints). I am trying to figure out what more I can add. Gelatin and meat have been problematic, but I'll try it again soon.

Breathing exercises are making me worse actually :-( It makes my breathing tired. The breathing problems are really severe. I think it's more related to some infection, or hypothyroidism. I am not sure.. Have an extreme tightness from stomach and up to neck. It has been like this nonstop for more than 5 years, started after I came home from India. Have always been doing yoga and meditation and I know how to breath, but can't :-(

If body is unable to store glycogen then thyroid supplement can make your feel worse.
You can try 1 mcg of T3 and see how body reacts to it. If it does not cause problem
and improves energy level then you might consider taking 1 mcg per 2-3 hours through
out the day. You can also try fish head or chicken neck soup for natural thyroid.

You have to be very careful about food with weak digestion. A lot of people have problem
with digesting milk. You can try raw carrot salad or cooked bamboo shoots
daily and it can dramatically improve digestion and hormonal balance.
White part of egg can be quite allergenic and egg yolk is much less allergenic.
You can eat 1 egg yolk daily. Extra PUFA in egg yolk is not good. Avoiding
PUFA is the most important part of RP's recommendation. Try to limit PUFA to 4 grams a day.

Apple juice is pectin free and quite easy on digestion. You need to add some baking soda
to neutralize the acid. You can make your own apple juice if you have access to ripe apple.
You might have to experiment with several brands to find out the juice that is suitable for you.

Fresh beef is quite easy to digest. You can also make your own milk curd ( Farmer's cheese)
by adding lemon juice or vinegar to warm milk. Strained yogurt is a good protein source
without lactic acid and lactose.

Starch in rice and potato ( it has a lot of pectin too) can be problematic for people
with digestion problem. If you choose to eat rice, glutinous sticky rice is less problematic.
You can try fruit+ vegetable broth for vitamins and minerals
and avoid the fiber. I use diced apple, potato. cucumber, spinach etc to make the broth.
Excess salt can be hard on stomach lining. Baking soda is safer. Good amount of
alkaline minerals ( calcium, sodium, potassium and magnesium) is very helpful.
Try to maintain calcium to phosphorus ratio between 2:1 to 1:1 .
Eat most of your protein during day time and carb and fat with little
bit of protein after sunset.

Sunlight or vitamin D3 supplement is quite helpful. You can skip milk for few days to
see how it feels. It would safer to slowly introduce milk once gut is in better condition.
Bad excipient in supplements and drugs are often a source of gut irritants and allergens.

Edit: Excess fluid can cause problem for hypothyroid person. Concentrated apple juice
can be a good source of sugar and nutrients without a lot of water.

 

[treelady]

mistelaj,
My understanding is that if you take too much progesterone at first it wakes up your estrogen receptors and you get all the high estrogen symptoms. So it is best to start slowly with the progesterone. And eliminate estrogens which is very difficult since they are everywhere. I am using Progest-E drops orally and Progestelle from http://www.womhoo.com/ on my skin. When I ordered the progestelle they sent a booklet and several sheets with helpful directions/suggestions. I am very impressed with all the information and their attention to detail such as it comes in glass bottles. (Plastic has estrogens that could leach out). It came with a sheet of safe toiletries/detergents, etc. (Most are estrogenic) And a long list of estrogenic herbs, foods and progesterone blockers to avoid. I guess I never thought of skin absorbing estrogen but Dr. Eckhart says you absorb it from your laundry detergent that remains on your clothes. There are no studies as is commonly used to base opinions. The information is based on patient and personal experiences. In my opinion that is better than rat studies.

I muscle test every thing rather than depending solely on what I read. That is how I know how much to take and what to take and when to take it. (To muscle test, put the item on your solarplex and ask your body if it wants it. Keep your mind open and do not expect a certain outcome. For a positive response your body will lean forward, negative it leans backward. The response is for the current moment. So you can retest later to see if the response is different. I'd be lost without knowing what my body wants and when it wants it and how much. Without testing you are just guessing.)

 

[tara]

My understanding is that if you take too much progesterone at first it wakes up your estrogen receptors and you get all the high estrogen symptoms. So it is best to start slowly with the progesterone.

This may be the way it works for some people, but I think Peat's view is that if you start with too little progesterone, there is a risk that it will call the estrogen out of the tissues, but not be enough to deactivate it, so you can get higher estrogen symptoms from too small a dose. There is a description suggesting taking 3 drops x 5 times a day to start with, and to reduce it after a while as symptoms improve.

 

[mistelaj]

Hi, again. I am really thankful for all replies. Tried doing nothing at all for a while, but it was not a good idea so I am back have some questions Maybe I write same things again, cant really think right now.

I just get more sick, this summer has been a big hell, feels like my body just breaks down itself and I can't almost use my legs some days.

I had some "good" days (not good, but much better). It was during my menstruation. On day 6-7 of the period everything started to get worse again, I am pretty sure the estrogen started to increase. It's always the same, after my menstruation everything start to be a hell and are until I start bleeding again.

I produce almost no progesterone, I have no ovulation and I am unsure if I ever have had one. I guess the problem is deficiency of stimulation from the pituitary gland, because of my low TSH/T4/T3 problems/central hypo.

I decided to start progest-e again and stick to it, not give up. I started on day 11-12 (now 17) but I think now that I should have started earlier, before the estrogen had chance so increase, I guess right after menstruation. And well, I feel worse than ever right now. The worst in inflammation in my whole body and the worst chest tightness and shortness of breath I ever have had. I have extreme muscle tightness, my breasts are tender, night sweats and this morning I woke up at 4 am with panic and pounding heart. The only good thing is that my temps are a little bit higher.

I have been taking maybe 100mg and now I tried 200mg but then everything became even worse.

Do you think I should just stick to it and wait for better days? Seems like my estrogen increases a lot... I try to help my liver which is always a problem, I take extra e-vitamin, charcoral etc.

I also took a half capsule of Nutri-meds bovine thyroid this morning and it was maybe not a good idea to do at the same time because I started to feel even worse, extreme fatigue and pain (last time I tried it, without progest-e the side effects started to subside after some days and my breathing started to be better).

Should I continue with progest-e? Do you think the estrogen will go down after a while, or maybe efter this menstrual cycle at least? Or do you think it's better to work only with the thyroid hormones instead?

I really hate estrogen right now and I realize why I am so sick...I guess I never have had any real progesterone production.

 

[Tarmander]

Have you tried iodine? This isn't really peat and I wouldn't mention it but I am apart of a Facebook group that does mega iodine dosing. A lot of women on there have your exact same issues of fibrocystic breasts, ovarian cysts, crazy cycles, etc. Personally, I would not try it as mega dosing iodine freaks me out a bit but the amount of success I have seen and for your specific issues...well if your desperate enough, you'll try just about anything right? A bottle of lugols might run you 20 bucks.

 

[tara]

Can you list what and how much you are typically eating in a typical day?

Did you try any of the suggestions from posters above? If so, what effects did you notice?

I had a period of waking with pounding heart etc. Since your other symptoms are not the same as mine, the causes and solutions may be different. But for me, I think low glycogen stores (partly from not eating enough carbs) and chronic unaware hyperventilation, esp. at night, were key. The problem resolved quickly after I started eating a more nutritious diet and keeping my mouth closed at night by mechanical means. Air hunger is also commonly caused by hyperventilation.

Hope you are out getting regular sunlight while it's available this time of year?

 

[mistelaj]

Have you tried iodine? This isn't really peat and I wouldn't mention it but I am apart of a Facebook group that does mega iodine dosing. A lot of women on there have your exact same issues of fibrocystic breasts, ovarian cysts, crazy cycles, etc. Personally, I would not try it as mega dosing iodine freaks me out a bit but the amount of success I have seen and for your specific issues...well if your desperate enough, you'll try just about anything right? A bottle of lugols might run you 20 bucks.

Thanks! I have tried iodine (both lugol, nascent and iosol) and believe in the power of iodine very much. I know it's not peat and I was really doubtful about taking higher doses of iodine before, but I realized it's impossible to look behind the good effects many people have. Some months ago I started with very small amounts of Lugols and started to lose hair (that happens every time, that's why I never continue), got very constipated etc. Decided to up my dose very much and started to have succcess.. My bottle had been open for a long time, so I guess it wasn't very effective. After a mistake when I happened to pour out the bottle I bought a new one and continued with the same dose....and yes, it was more effect, too much effect and I think I turned of my thyroid for some weeks from too high dose. I stopped taking it.. But, actually, I'll try again now!! With a lower dose, but not very low. Because I started to see some goods effects last time, bebfore I took the too high dose.

 

[charlie]

“A dosage of 150 mcg (micrograms, not milligrams, e.g., ug not mg) is a safe amount of iodine. There are excellent references describing the effect of a moderate iodine excess (even below a milligram per day) on the thyroid. An iodine deficiency can cause hypothyroidism (rare now), but so can an excess. Iodine deficiency is an unusual cause of hypothyroidism, except in a few places, like the mountains of Mexico and China, and the Andes.

“Most goiters now are from estrogen-like effects, but they used to be from iodine deficiency. Chronic excess iodine tends to cause thyroiditis, regardless of the gland’s size. The amounts used by Abraham and Flechas are much larger than this — very toxic doses, enough to cause severe thyroid problems.”

Is there a rational way to determine iodine deficiency or excess?

“It’s easy to recognize a chronic iodine deficiency, because it causes the thyroid gland to enlarge. Goiters can be caused in various ways, for example by being exposed to various goitrogens, including excess iodine, or by excessive estrogen and deficient progesterone, as well as by an iodine deficiency. “However, a chronic excess of iodine is harder to recognize, because it can produce a variety of degenerative changes. Measurement of the average daily iodine intake or excretion in the urine would be needed to confirm an excess. High iodine intake can suppress TSH, and since high TSH is pro-inflammatory, the iodine can have some protective anti-inflammatory actions, but in the long run, the thyroid suppression becomes a problem.”

http://www.functionalps.com/blog/2011/1 ... -ray-peat/

 

[Tarmander]

“A dosage of 150 mcg (micrograms, not milligrams, e.g., ug not mg) is a safe amount of iodine. There are excellent references describing the effect of a moderate iodine excess (even below a milligram per day) on the thyroid. An iodine deficiency can cause hypothyroidism (rare now), but so can an excess. Iodine deficiency is an unusual cause of hypothyroidism, except in a few places, like the mountains of Mexico and China, and the Andes.

“Most goiters now are from estrogen-like effects, but they used to be from iodine deficiency. Chronic excess iodine tends to cause thyroiditis, regardless of the gland’s size. The amounts used by Abraham and Flechas are much larger than this — very toxic doses, enough to cause severe thyroid problems.”

Is there a rational way to determine iodine deficiency or excess?

“It’s easy to recognize a chronic iodine deficiency, because it causes the thyroid gland to enlarge. Goiters can be caused in various ways, for example by being exposed to various goitrogens, including excess iodine, or by excessive estrogen and deficient progesterone, as well as by an iodine deficiency. “However, a chronic excess of iodine is harder to recognize, because it can produce a variety of degenerative changes. Measurement of the average daily iodine intake or excretion in the urine would be needed to confirm an excess. High iodine intake can suppress TSH, and since high TSH is pro-inflammatory, the iodine can have some protective anti-inflammatory actions, but in the long run, the thyroid suppression becomes a problem.”

http://www.functionalps.com/blog/2011/1 ... -ray-peat/

Yeah, like I said it is not very Peat, but there are many women who have had success with high dose iodine in treating female problems. Not sure what the mechanism would be behind taking 50mg of iodine per day.

 

[mistelaj]

Can you list what and how much you are typically eating in a typical day?

Did you try any of the suggestions from posters above? If so, what effects did you notice?

I had a period of waking with pounding heart etc. Since your other symptoms are not the same as mine, the causes and solutions may be different. But for me, I think low glycogen stores (partly from not eating enough carbs) and chronic unaware hyperventilation, esp. at night, were key. The problem resolved quickly after I started eating a more nutritious diet and keeping my mouth closed at night by mechanical means. Air hunger is also commonly caused by hyperventilation.

Hope you are out getting regular sunlight while it's available this time of year?

Thanks! I am in the sun every time when it's visible...it has not been a sunny summer.

Yes, I tried, but about diet...the problem is : I get worse when I eat more more fructose. I don't digest it good. I also have allergies to a lot of fruits (and veggies). The only fruit I don't get allergic reactions from right now is cooked apples. I eat mostly white rice, apples, sugars, milk, some eggs, coconut oil, butter, squash. 2000-2500 calories a day and maybe 50 percent carbs, sometimes more. I can't handle meat, not even gelatin. I get allergic reactions from so much. Last days I have tried eating some well cooked legumes and rices with spices and I seem to do better with that than with fruits and sugar right now.

My breathing problems are not actually only air hunger, it's more of a extreme chest tightness, air hunger...eating, sitting, walking, sleeping everything is a problem. Feels like my muscles are locked in the most tight position that is possible and my ribs are kind of oblique. It started after an infection in India, but I am unsure if it is an infection itself or something that just triggered everything.

 

[mistelaj]

And... I get extreme muscle tightness, chest tightness (my diaphragm is really sore) just some minutes after taking progest-e in doses of 50mg and higher. I not get the problem after taking smaller doses...I feel better when I take smaller doses. Maybe I not need so high doses? I want to knock down the estrogen, but maybe it not works with high doses for me.

 

[charlie]

Yeah, like I said it is not very Peat, but there are many women who have had success with high dose iodine in treating female problems. Not sure what the mechanism would be behind taking 50mg of iodine per day.

Ooops.

Hope you find relief. :)

 

[mistelaj]

Yeah, like I said it is not very Peat, but there are many women who have had success with high dose iodine in treating female problems. Not sure what the mechanism would be behind taking 50mg of iodine per day.

Ooops.

Hope you find relief. :)

Actually, I felt better after taking 4mg of iodine this morning....less tired, less muscle tightness etc..

 

[tara]

Hej Mistelaj,
If high dose progesterone makes you feel bad, and a lower dose makes you feel better, I'd probably be going for the lower dose for a while if it were me.
The foods you are eating seem good. Stewed apples are good. Do you digest potatoes OK? If so, you can get more minerals and protein out of them than white rice, which may be helpful if you are having trouble with other fruit.
Even if meat is not serving you well, have you tried a small portion of liver? I like it best lightly fried, or made into pate. It's another way to get some useful nutrients, and you don't need very much to make a difference.
I'd suggest entering your food into cronometer or similar, to see if you are getting enough micronutrients. Without seeing quantities it's hard to know, but I wonder if it is low in some of the alkaline minerals, eg potassium and magnesium? Amongst other things, magnesium is needed to allow muscles to relax. Are you salting food to taste?

I learned a lot about breathing by reading about Buteyko here (you have be good at ignoring the advertisements):
http://www.normalbreathing.com/learn.php
No guarantees that it would work for you, but I got my diaphragm activated fairly quickly by using a belt around my chest a few times. If the chest can't expand, the diaphragm has to do the breathing, and my experience was that it didn't take long for it to get the habit back. Anything that makes you laugh a lot may also help relax the diaphragm.
If your ribs are really stuck, I wonder whether an osteopath or similar would be helpful?