It is a long time since I wrote any on this forum, so I thought that I write an update on my situation.
I still have a lot of symptoms that I'm not to happy with
Some of the symptoms are:
Bad exercise intolerance
Extreme fatigue
Joint, muscle pains and stiffness (that can be severe)
Low bodytemp (96.8F) (36,0C)
Bradycardia 58-63BBM
Low blood pressure 65/100
Peripheral neuropathy (legs)
Low libido
Cold hands and feet, but also tenderness (pain when you press them)
Very dry skin
All of the symptoms above are very common in hypothyroidism (hashimotos), adrenal fatigue, fibromyalgia and methylation problems. And maybe even in MC?
Hypothyroidism:
My blood tests
TSH: 3.2 (0.4-3.7) This value is not reliable because it varies widely from person to person and with increasing age (normal for my age is 1.35 according to the NHANES III studies)
TPO-ak: 69 (<34)
One possible solution: medicate with levothyroxine (T4), liothyronine (T3) that will reduce the antibodies (according to some studies)
Adrenal fatique:
According to the Adrenal Stress Test - Genova Diagnostics I have level 3 Adrenal fatique.
One possible solution: supplement with pregnenolone, DHEA according to the kalish method.
So here are the choices I face
My house doctor: She wants me to try Wellbutrin, becurse I'm tired all the time (not depressed)
My Rheumatology doctor: He thinks I have mild psoriasis athritis and whant's me to try Methotrexate.
My GI specialist: Whant's me to try Entocort, since my MC is still active.
My hypo doctor (that I have not visited yet): He will probable put me on T4 hormones, maybe even T3.
My functional medicine practitioner: whant's me to take pregnenolone, DHEA and other supplements.
My second doctor: Has put me on LDN, so I take 1mg per day, increasing slowly but surely.
Can anyone really know why I'm have extreme fatigue and joint, muscle pains? This is so complex, is it pain from a mild psoriasis athritis, pain from a active MC (leaky gut), pain from an underactive thyroid or/and adrenal function or something still unknown like methylation problems?
I guess my approach to this is to start with what is least harmful.
An update
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Jonas,
I can relate to the following of your symptoms:
Low bodytemp (96.8F) (36,0C)
Bradycardia 58-63BBM
Low blood pressure 65/100
Peripheral neuropathy (legs)
Low libido
Cold hands and feet, but also tenderness (pain when you press them)
Very dry skin
and psoriasis, but after GF, DF, EF and soy, my psoriasis is not visible any longer.
When I mention my issues to my doctor, he only wants to put me on some kind of medication, but I'm convinced that I would be better off if I could "crack the code" and find the underlying cause of my problems. I'm convinced that there is one!
I have come to believe that some of the answer probably lies in the methylation cycle. The methylation cycle is very hard to understand for a layman, but I found Dr Myhill's CFS-The Methylation Cycle not so hard to understand, as well as the website called How I Recovered.
http://www.drmyhill.co.uk/wiki/CFS_-_Th ... tion_Cycle
http://howirecovered.com/active-b12-the ... urological
Lilia
I can relate to the following of your symptoms:
Low bodytemp (96.8F) (36,0C)
Bradycardia 58-63BBM
Low blood pressure 65/100
Peripheral neuropathy (legs)
Low libido
Cold hands and feet, but also tenderness (pain when you press them)
Very dry skin
and psoriasis, but after GF, DF, EF and soy, my psoriasis is not visible any longer.
When I mention my issues to my doctor, he only wants to put me on some kind of medication, but I'm convinced that I would be better off if I could "crack the code" and find the underlying cause of my problems. I'm convinced that there is one!
I have come to believe that some of the answer probably lies in the methylation cycle. The methylation cycle is very hard to understand for a layman, but I found Dr Myhill's CFS-The Methylation Cycle not so hard to understand, as well as the website called How I Recovered.
http://www.drmyhill.co.uk/wiki/CFS_-_Th ... tion_Cycle
http://howirecovered.com/active-b12-the ... urological
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Jonas,
I'm sorry to see that you are still having so many symptoms. When proper diet changes don't bring relief of symptoms, unless your diet is somehow being cross-contaminated with gluten, I tend to be suspicious about certain possible long-term deficiencies.
It's possible that treating hypothyroidism may resolve your symptoms. However, you may have a magnesium deficiency. Magnesium deficiency can mimic thyroid problems. It can cause tachycardia and bradycardia (I had both symptoms at various times). IOW a magnesium deficiency can interfere with the regulation of your heart rate, blood pressure, or even breathing. Because it interferes with those vital body functions, it typically causes fatigue and low libido.
Shortness of breath (and the inability to draw a deep breath), was a frequent symptom for me. I had very poor endurance whenever I tried to do anything that required physical effort. My hands and feet were frequently cold (except in hot weather). And yes, a magnesium deficiency can cause pain. I would often wake up with a stiff, sore neck and sometimes back pains. Occasionally I would feel sudden pinpoint pains at various locations (usually on my hands, but sometimes on my legs or feet, or other locations). Obviously that's consistent with peripheral neuropathy (I have had peripheral neuropathy in my lower legs and feet for roughly 10 years). One of the fingers of my left hand would often become about half-numb, and as time went on, it tended to remain numb most of the time.
When I recently had an adverse reaction to an antibiotic, the problem became acute (the antibiotic depleted most of my remaining supply of magnesium) and my lower lip became numb. My magnesium was so low at that point that a blood test finally showed a magnesium deficiency, so that's when I was able to finally figure out the problem.
Increasing my magnesium supplement resolved all those issues. The problem with shortness of breath that has been bothering me for about 10 years is now gone. My BP and heart rate seem to be back to normal and so is everything else, including my libido. Life is good again.
Of course there are no guarantees that you are having the same problem, but your persistent symptoms certainly seem suspicious. And you can't go by the magnesium blood tests, because my previous test results were normal. Until your cells are dangerously low on magnesium, your blood level of magnesium will always show a normal level (because it's such a critical electrolyte).
Tex
I'm sorry to see that you are still having so many symptoms. When proper diet changes don't bring relief of symptoms, unless your diet is somehow being cross-contaminated with gluten, I tend to be suspicious about certain possible long-term deficiencies.
It's possible that treating hypothyroidism may resolve your symptoms. However, you may have a magnesium deficiency. Magnesium deficiency can mimic thyroid problems. It can cause tachycardia and bradycardia (I had both symptoms at various times). IOW a magnesium deficiency can interfere with the regulation of your heart rate, blood pressure, or even breathing. Because it interferes with those vital body functions, it typically causes fatigue and low libido.
Shortness of breath (and the inability to draw a deep breath), was a frequent symptom for me. I had very poor endurance whenever I tried to do anything that required physical effort. My hands and feet were frequently cold (except in hot weather). And yes, a magnesium deficiency can cause pain. I would often wake up with a stiff, sore neck and sometimes back pains. Occasionally I would feel sudden pinpoint pains at various locations (usually on my hands, but sometimes on my legs or feet, or other locations). Obviously that's consistent with peripheral neuropathy (I have had peripheral neuropathy in my lower legs and feet for roughly 10 years). One of the fingers of my left hand would often become about half-numb, and as time went on, it tended to remain numb most of the time.
When I recently had an adverse reaction to an antibiotic, the problem became acute (the antibiotic depleted most of my remaining supply of magnesium) and my lower lip became numb. My magnesium was so low at that point that a blood test finally showed a magnesium deficiency, so that's when I was able to finally figure out the problem.
Increasing my magnesium supplement resolved all those issues. The problem with shortness of breath that has been bothering me for about 10 years is now gone. My BP and heart rate seem to be back to normal and so is everything else, including my libido. Life is good again.
Of course there are no guarantees that you are having the same problem, but your persistent symptoms certainly seem suspicious. And you can't go by the magnesium blood tests, because my previous test results were normal. Until your cells are dangerously low on magnesium, your blood level of magnesium will always show a normal level (because it's such a critical electrolyte).
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I have many of the issues you describe. I am currently being under treated with my thyroid meds and believe I wouldn't have many of these problems if I could find an endo willing to listen to my symptoms and not just look at my numbers. I would start there first. If you aren't depressed I would be hesitant to add any of those drugs.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi Brandy,brandy wrote:Hi Jonas,
Statistically we are at high risk of thyroid issues so I'm with DEb13 and Leah and would explore that first. I seem to be the rare person who did not have a problem with thyroid.
I'm presently taking DHEA and pregnenelone if you ever want me to elaborate on my experience.
Brandy
Obviously, I'm not Jonas, but I would like you to elaborate your experience with taking DHEA. My MC is under control these days, but I have issues like fatigue and low energy. (Well, I'm 69 years old, so may that is "normal").
After having been on Entocort in two rounds (2010 and 2015) I wanted to check my nutritional status, so I went to see a holistic doctor.
Most of my blood tests were fine. However, the 24 hrs urine test gave these results:
S-DHEA-sulfate: 2.8 umol/L (referance area: <7.5)
Urine Free Cortisol 24hrs: 119 nmol (ref area: 45-272)
Proteins: P-Ceruloplasmin: 0.25 g/L (ref area: 0.24-0.55)
My doctor adviced me to take a lot of seaweeds and Kelp, to get my iodine level up, as well as zink and P5P for my pyrroluria.
Reading on the internet about DHEA-supplements leaves me with the impression that one should not take DHEA other than in close cooperation with a medical doctor.
So, my questions are:
- How safe is it to take DHEA as a self-medication?
- What damage may it cause?
- Since thyroid and adrenal issues are so complex and hard to understand for a lay person, I have a lot of respect as to self-medication
While my holistic doctor who is quite unorthodox, didn't advice me to take DHEA, there must be a reason for it. Or, maybe his theory is that by correcting the iodine deficiency, the rest will correct itself?
I would appreciate your comments!
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi Lilja,
Brandy here. Sorry for the delay in getting back to you.
Yes, understand you have been fatigued for awhile.
Folks in their 70's, 80's and 90's have 10-20% of the DHEA floating around in their body as folks in their mid twenties. I suspect that it is less risky for folks in their 70's, 80's and 90's to supplement with DHEA than 20-50 year olds. I think that folks under 40 should not supplement with DHEA as a general rule as not a lot is known about the risks.
I think this is a good recap on DHEA. http://umm.edu/health/medical/altmed/su ... drosterone.
Both Mr. Wilson in the book mentioned above and Keith McCormick in another book I'm reading on bone health "The Whole Body Approach to Osteoporosis" recommend supplementing with the support of a practitioner. Mr. McCormick who got osteoporosis as a 40 something year old male comments in his book that he thinks that most of the senior citizen women that he sees in his practice would benefit from moderate hormonal supplementation. He is speaking in terms of bone health and energy levels.
If you look at the University of Maryland link it mentions that Entocort use is linked to low DHEA.
I got off of Entocort in January of 2011 and did not start DHEA supplementation until start of Dec of 2012. I could not understand why if I got off of Entocort in January of 2011 and MC wise was doing good my fatigue got worse month after month after month until Nov 2012 when I discovered the low hormones. Ultimately it took supplementing with B vitamins (started around July of 2011) supplementing with iron (started around December of 2011--no longer supplementing) and supplementing with hormones--started around December of 2012 to ultimately kick me out of mind numbing fatigue. For me supplementing with DHEA was about quality of life, the fatigue was so mindnumbing I had nothing to lose and would have tried anything to feel better.
I think the biggest risks are with the young body building males who take giant doses and their risks are erectile disfunction and steroid rage.
I'm unfamiliar with iodine so I can't comment on that.
My dhea scores were very low when tested via blood work. I think the ranges might be different in Europe from the US but I am not sure.
I was age 52 when blood work run.
11-17-2012 DHEA was 33; normal range is 31-701 ng/dl, i.e. mine was very low.
Testosterone serum, score to low to measure, normal is 3-41 ng/dl
Progesterone was too low to measure, post menopausal it should be .0-.8
Compounding pharmacist told me to take between 25 mg -50 mg of DHEA and 25-50 mg of pregnenelone based upon my testing until he could get with my Gyn Physicians Asst to authorize a creme dosage.
I was scared of supplementing so I started with sublingual 25 mg of DHEA and 25 mg of sublingual prenenelone (all Over the counter in the US) and I cut them in half so took 12.5 mg of each per day for about two weeks. Week three I moved up to 25 mg of each. I never tried 50 mg. I started slowly feeling better. About week 3 or 4 I would get a surge of libido around lunch time probably when everything was hitting my system.
Eight weeks into the system I switched to cream formula after pharmacist and Gyn PA had finished consulting. Cream formula has 20 mg of DHEA plus some other hormones.
Cream formula was much better and more natural feeling to my body, i.e. I did not get the libido spike at lunch time. Cream formula is only available by prescription in the US.
All in all I'm guessing it took about 3-1/2 - 4 months until my energy levels came fully back.
One year into it I started getting some acne on my face. Pharmacist cut back the testosterone levels by 50%. That has been the only side effect to date.
Hope this provides some insight. Let me know if you have any further questions.
Brandy
Brandy here. Sorry for the delay in getting back to you.
Yes, understand you have been fatigued for awhile.
It is a banned substance for Olympic competitions and banned for college competitions. It is a grandparent hormone and linked to generating testosterone and estrogen. It is sold over the counter in the U.S. I found the following book helpful in understanding how it worked: "Adrenal Fatigue, the 21st Century Stress Syndrome" by James L Wilson. The book was published in 2000 so it is a little dated. The book is somewhat simplistic but it helped me to understand the hormonal cascade.How safe is it to take DHEA as a self-medication?
Folks in their 70's, 80's and 90's have 10-20% of the DHEA floating around in their body as folks in their mid twenties. I suspect that it is less risky for folks in their 70's, 80's and 90's to supplement with DHEA than 20-50 year olds. I think that folks under 40 should not supplement with DHEA as a general rule as not a lot is known about the risks.
I think this is a good recap on DHEA. http://umm.edu/health/medical/altmed/su ... drosterone.
Both Mr. Wilson in the book mentioned above and Keith McCormick in another book I'm reading on bone health "The Whole Body Approach to Osteoporosis" recommend supplementing with the support of a practitioner. Mr. McCormick who got osteoporosis as a 40 something year old male comments in his book that he thinks that most of the senior citizen women that he sees in his practice would benefit from moderate hormonal supplementation. He is speaking in terms of bone health and energy levels.
If you look at the University of Maryland link it mentions that Entocort use is linked to low DHEA.
I got off of Entocort in January of 2011 and did not start DHEA supplementation until start of Dec of 2012. I could not understand why if I got off of Entocort in January of 2011 and MC wise was doing good my fatigue got worse month after month after month until Nov 2012 when I discovered the low hormones. Ultimately it took supplementing with B vitamins (started around July of 2011) supplementing with iron (started around December of 2011--no longer supplementing) and supplementing with hormones--started around December of 2012 to ultimately kick me out of mind numbing fatigue. For me supplementing with DHEA was about quality of life, the fatigue was so mindnumbing I had nothing to lose and would have tried anything to feel better.
I think the biggest risks are with the young body building males who take giant doses and their risks are erectile disfunction and steroid rage.
I'm unfamiliar with iodine so I can't comment on that.
My dhea scores were very low when tested via blood work. I think the ranges might be different in Europe from the US but I am not sure.
I was age 52 when blood work run.
11-17-2012 DHEA was 33; normal range is 31-701 ng/dl, i.e. mine was very low.
Testosterone serum, score to low to measure, normal is 3-41 ng/dl
Progesterone was too low to measure, post menopausal it should be .0-.8
Compounding pharmacist told me to take between 25 mg -50 mg of DHEA and 25-50 mg of pregnenelone based upon my testing until he could get with my Gyn Physicians Asst to authorize a creme dosage.
I was scared of supplementing so I started with sublingual 25 mg of DHEA and 25 mg of sublingual prenenelone (all Over the counter in the US) and I cut them in half so took 12.5 mg of each per day for about two weeks. Week three I moved up to 25 mg of each. I never tried 50 mg. I started slowly feeling better. About week 3 or 4 I would get a surge of libido around lunch time probably when everything was hitting my system.
Eight weeks into the system I switched to cream formula after pharmacist and Gyn PA had finished consulting. Cream formula has 20 mg of DHEA plus some other hormones.
Cream formula was much better and more natural feeling to my body, i.e. I did not get the libido spike at lunch time. Cream formula is only available by prescription in the US.
All in all I'm guessing it took about 3-1/2 - 4 months until my energy levels came fully back.
One year into it I started getting some acne on my face. Pharmacist cut back the testosterone levels by 50%. That has been the only side effect to date.
Hope this provides some insight. Let me know if you have any further questions.
Brandy
I make sure I use Sea Salt with Iodine to make sure I am getting iodine in my system daily.
I found this site information interesting, and may have mine checked at my next appt end of the month.
http://www.globalhealingcenter.com/natu ... eficiency/
I found this site information interesting, and may have mine checked at my next appt end of the month.
http://www.globalhealingcenter.com/natu ... eficiency/
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
Thank you Brandy, Gabes and Erica!
Brandy: DHEA is not an approved medication in my country. Three doctors of medicine have recently lost their licence to practise, because they have been treating people with thyroid problems with hormons (I live in a nanny state). That’s a shame, because people with difficult thyroid problems only had these three doctors who were willing to treat them with hormons. The only medicine given to these is Levaxine, which makes them even sicker. I might take the chance of buying DHEA online from abroad, with the risk of it being stopped in customs.
Gabes: Yes, I was adviced to eat seaweed (Arame, Wakame and Kombu), but he forgot to state how much.
Erica: I had elevated sodium in urine, 134 mmol/L (ref 30-100) so I don’t think it would be wise to eat salt, even if it is with iodine. Elevated sodium could point at a renal problem, so this together with microscopic blood in urine has made my GP order a CT of kidneys and the urine tract later this month. Or maybe it’s my sodium-potassium pump (a thyroid problem) that is out of order.
There is certainly something wrong here, my arms and legs have no muscles, I have fatigue, but I still wake up at 03.40-04.30 am , (I go to bed around 11pm).
But, my digestion has calmed down, so maybe all this is due to the two rounds of Entocort I have had, and that given time these weird symptoms and urine/blood test results will improve.
Lilja
Brandy: DHEA is not an approved medication in my country. Three doctors of medicine have recently lost their licence to practise, because they have been treating people with thyroid problems with hormons (I live in a nanny state). That’s a shame, because people with difficult thyroid problems only had these three doctors who were willing to treat them with hormons. The only medicine given to these is Levaxine, which makes them even sicker. I might take the chance of buying DHEA online from abroad, with the risk of it being stopped in customs.
Gabes: Yes, I was adviced to eat seaweed (Arame, Wakame and Kombu), but he forgot to state how much.
Erica: I had elevated sodium in urine, 134 mmol/L (ref 30-100) so I don’t think it would be wise to eat salt, even if it is with iodine. Elevated sodium could point at a renal problem, so this together with microscopic blood in urine has made my GP order a CT of kidneys and the urine tract later this month. Or maybe it’s my sodium-potassium pump (a thyroid problem) that is out of order.
There is certainly something wrong here, my arms and legs have no muscles, I have fatigue, but I still wake up at 03.40-04.30 am , (I go to bed around 11pm).
But, my digestion has calmed down, so maybe all this is due to the two rounds of Entocort I have had, and that given time these weird symptoms and urine/blood test results will improve.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I find lingual iodine drops MUCH easier and MC friendlier!
are these available in Norway?
see if this product from iHerb can be shipped to Norway
http://www.iherb.com/Eidon-Mineral-Supp ... 0-ml/26006
mmmm interesting about DHEA not being available, (and frustrating!)
are these available in Norway?
see if this product from iHerb can be shipped to Norway
http://www.iherb.com/Eidon-Mineral-Supp ... 0-ml/26006
mmmm interesting about DHEA not being available, (and frustrating!)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I have been having about 325mcg elemental iodine per day (mcg is the same as squiggly u for ug)
the RDA is about 150mcg per day
you can have up to 1000mcg per day for serious deficiency
of note for your symptoms etc - iodine deficiency may cause or be associate with;
impaired protein synthesis (this could explain the muscle issues you mentioned
fatigue
low IQ
poor motor coordination
amongst many other things
the RDA is about 150mcg per day
you can have up to 1000mcg per day for serious deficiency
of note for your symptoms etc - iodine deficiency may cause or be associate with;
impaired protein synthesis (this could explain the muscle issues you mentioned
fatigue
low IQ
poor motor coordination
amongst many other things
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama