Hepatitis Forums
Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: drummerman on April 28, 2016, 10:38:18 pm
-
Went to doc and let him know that my muscles felt weak and I felt like I had aged 5 years in the span of 1 year.
I suggested he check my vitamin levels, based on my internet research.
Guess what?? I have a severe vitamin D deficiency!
Guess what that can cause:
Muscles weakness
fatigue
depression!
Vitamin D deficiency can be encouraged by a magnesium deficiency. No test available for magnesium deficiency.
Guess what magnesium deficiency can cause?
Depression!
Wondering if these deficiencies were caused by the viekira treatment?
Anyway, doc prescribed very large vit D supplement , taken once a week. I am also starting Omega 3, as it helps vit D be absorbed. Also starting magnesium and calcium sups.... cause low vitamin D causes your bones to weaken.
Guess what else low vitamin D causes?? bone pain!
Remember me mentioning how I was having bone pain in my fingers, not joint pain. Very painful..felt like shin splints in my finger bones.
Guess what? Glad I'm getting this figured out.... but getting tired of doing the doctor's job!
If you are having these issues , please have your vitamin D levels checked. Insurance may not pay, but it is a fairly cheap test.
I feel better already , after one pill....maybe psychosomatic, but my D levels were really , really low.
good luck all!
dm
-
Thanks for the info DM. How low was your Vitamin D?
I had mine checked 5 weeks post-tx, due to my ongoing crappy feeling and because I had read that ribavirin-anemia correlates to low Vit D levels in body.
My Vit D was 104 nmol/L (ref range: 75-150)
My lab grades the results as follows:
< 25: deficient
25-74: insufficient
> 200: toxic
So according to that I was 'normal'. Still, I suspect higher is better (just not too high).
Curious to know what your numbers were.
I also got a magnesium test at that time.
Result: 0.90 mmol/L (ref range: 0.70-1.05)
Am STILL trying to get myself sorted out 9 months post-treatment. Still have very low iron and feel quite short of breath and easily tired because of it. Am going back in to doctor tomorrow with a new theory...
good luck to you, dm!
kim
-
Thanks for the info DM. How low was your Vitamin D?
I had mine checked 5 weeks post-tx, due to my ongoing crappy feeling and because I had read that ribavirin-anemia correlates to low Vit D levels in body.
My Vit D was 104 nmol/L (ref range: 75-150)
My lab report grades the results as follows:
<25: deficient
25-74: insufficient
>200: toxic
So according to that I was 'normal'. Still, I suspect higher is better (just not too high).
Curious to know what your numbers were.
I also got a magnesium test at that time.
Result: 0.90 mmol/L (ref range: 0.70-1.05)
Am STILL trying to get myself sorted out 9 months post-treatment. Still have very low iron and feel quite short of breath and easily tired because of it. Am going back in to doctor tomorrow with a new theory...
good luck to you, dm!
kim
hmmm... didnt know there was a magnesium test. I am starting a mag and calcium sup soon. Couldn't hurt.
My D level was 21.
Anything below 82 is bad.
Good luck to you too!
dm
-
Thanks Drummerman
This is really helpful for me too and I'd love to hear how the bone pain, fatigue and other symptoms go with the supplements.
Hazel.
-
Drummerman, you are giving us an important example of why we can't be shy or afraid or whatever to ask any and all questions of our doctors. They all just seem to be too busy these days to actually analyze & problem solve our complaints, vs. dismissing them. So very happy to hear you are getting some answers, and solutions that seem relatively simple (how about THAT for a change!!). The fear of the unknown is what drives us crazy, so very glad you are getting answers, even if you are the one who had to diagnosis the problem. FT
-
Issues with vit D are sometimes felt by people hand in hand with osteoporosis. There is a connection between liver dysfunction and osteoporosis which can be exacerbated by HCV. My specialist did a bone density scan on my a few years ago, I was showing mild osteoporosis and he suggested vit D straight away.
Vit D is vital for wellbeing - I reckon it's one of the reasons we feel happier in sunshine - all that vit D is making us feel better!
-
Yes, I just recently started changing the way I eat cuz I was getting wild sugar cravings and all the other post tx symptoms you all write about. Before tx I always went easy on protein, with stage 2-3 fibrosis, protein didn't often sit well. Now I am starting to add a hard boiled egg a couple times a week for breakfast or cottage cheese and peaches. Also some red meat once or twice a month. Also adding snacks of celery with almond butter or Apple and cheddar cheese. Really trying to avoid sweets. So far I have more energy throughout the day. I hope it works for the long run. I still get migraines once or twice a month for some reason, but notice more often than not, when that happens, other people at work have a headache too. Not sure what's up with that. Thanks for sharing. I guess I just thought maybe our livers have healed quite a bit, we need to up our dietary protein and stuff?
-
Hi Philadelphia
Having somewhat lower bone density (Osteopenia) is not uncommon in post menopausal women. It seems to be one way in the US that unnecessary treatment for osteoporosis is pushed on women who do not need it. From what I have read the best thing is weight bearing exercise.
http://familydoctor.org/familydoctor/en/diseases-conditions/osteopenia.printerview.all.html
What causes osteopenia?
Your bones are constantly changing. New bone is growing while old bone is being broken down and reabsorbed by your body. When you are young, you grow new bone faster than your body breaks down old bone. This increases your bone mass. Once total bone mass has peaked, you start to lose it because your body is breaking down old bone faster than you can grow new bone. If you lose enough bone mass, your bones may weaken.
What are the risk factors for osteopenia?
The following things put you at increased risk for osteopenia. The more of these that apply to you, the higher your risk is. Talk to your family doctor about your risk factors.
Aging
Early menopause (before age 45)
Surgery to remove ovaries before menopause
Sedentary lifestyle (not getting enough exercise)
Smoking or tobacco use
Alcohol abuse
Eating disorders such as anorexia nervosa and bulimia
Hyperthyroidism, either from an overactive thyroid or from taking too much medicine to treat hypothyroidism.
Am I at risk for osteopenia?
Women are more likely to develop osteopenia than men. This is due to several factors. Women have less bone mass to begin with, tend to live longer and take in less calcium than do men. In women, the rate of bone loss speeds up after menopause, when estrogen levels fall. Since the ovaries make estrogen, faster bone loss will also occur if both ovaries are removed by surgery.
How is osteopenia treated?
It is important to treat low bone mass to keep it from progressing into osteoporosis. Treatment starts with changes to your lifestyle. Your doctor will want you to increase your physical activity, especially weight-bearing exercise. Weight-bearing exercise can help your bones become stronger. It can also build muscle and improve your balance, both of which can help prevent against broken bones. Examples of weight-bearing exercise include walking, jogging and climbing steps.
Your doctor will also suggest ways to get more calcium and vitamin D in your diet. Nonfat and low-fat dairy products, such as yogurt, cheese and milk, are good sources of calcium. Other sources of calcium include dried beans, pink salmon, spinach and broccoli. Some foods, such as orange juice, breads and dry breakfast cereals, may be fortified with calcium or vitamin D or both. Your doctor may suggest a Vitamin D or calcium supplement as well.
In Health
Lynn
-
Knowing the link between bone density and weight bearing exercise I've been pretty scrupulous with exercise. I walk at least 6 days a week for about 3km with the dog. I've done this for about 5 or 6 years now.
I also do it for my blood pressure and my general well being. I feel better for it. And I get to appreciate the beauty of 6:30 in the morning - and take a photo on my morning walk! :)
-
Yes exercise is so important for us all no mater what our situation. I haven't done any lately and really need to get back up off the couch.
I know having a good diet and exercise is important but personally I have a bad diet and currently do not exercise and have a sedentary job. Need to lose about 25 lbs to have a BMI considered to be in normal range right now my BMI is about 30.1 just on the wrong side of obese.
Also no dog :)
-
Been doing some catching up on reading posts and ran across this one. Strange that I had cut out all of My vitamins and supplement since
start treatment back in July 2015. Ironically, calcium, magnesium, vitamins D and E were right there in the forefront of the list that I have given to My Doctors. It seems that none of My blood tests have been checking for Vitamin or Mineral deficiencies! Two weeks ago I starting checking and sure enough no tests have been done . So I requested them to be added to the Lab order. Seems that all that has been added is Vitamin D and E. Called insurance and Doctors office trying to get CPT codes and diagnosis code so Insurance will O.K. more comprehensive testing coverage. If not cost prohibitive I guess I will pay for them if I have anything left in My HSA account. Bone and joint pain have been a bear since New Years. Unless contraindicated , after My next set of Labs next week , I am going to ramp up My vitamin and supplement intake to see if I get to feeling better. Exercise has been almost non existant these days. Been trying to get in as much walking as My knees and feet will endure. Average has been 1.5-2.5 miles. Still get fatigued quickly late afternoon into evening time. Most people don't seem to understand just how hard it can be as they see no evident symptoms.
Oh well, one foot in front of the other and take it as it comes!!!!!
-
My dog keeps me moving, Lynn. Don't know if I'd be so conscientious if it wasn't for the dog!
-
Yeah I like pets but my better half not so much so I guess I will need to take myself for a walk :)
DM
Glad it sounds like you are getting good information for your health hoping you feel better every day
-
Been doing some catching up on reading posts and ran across this one. Strange that I had cut out all of My vitamins and supplement since
start treatment back in July 2015. Ironically, calcium, magnesium, vitamins D and E were right there in the forefront of the list that I have given to My Doctors. It seems that none of My blood tests have been checking for Vitamin or Mineral deficiencies! Two weeks ago I starting checking and sure enough no tests have been done . So I requested them to be added to the Lab order. Seems that all that has been added is Vitamin D and E. Called insurance and Doctors office trying to get CPT codes and diagnosis code so Insurance will O.K. more comprehensive testing coverage. If not cost prohibitive I guess I will pay for them if I have anything left in My HSA account. Bone and joint pain have been a bear since New Years. Unless contraindicated , after My next set of Labs next week , I am going to ramp up My vitamin and supplement intake to see if I get to feeling better. Exercise has been almost non existant these days. Been trying to get in as much walking as My knees and feet will endure. Average has been 1.5-2.5 miles. Still get fatigued quickly late afternoon into evening time. Most people don't seem to understand just how hard it can be as they see no evident symptoms.
Oh well, one foot in front of the other and take it as it comes!!!!!
Hey Tommy ,
sorry to hear about your problems. The vitamin D test is fairly inexpensive. I hope my insurance will pay, but if not, its around 100 bucks.
hang in there man!
dm
-
Yeah I like pets but my better half not so much so I guess I will need to take myself for a walk :)
DM
Glad it sounds like you are getting good information for your health hoping you feel better every day
good days and bad days. Its weird.
dm
-
Drummerman, you are giving us an important example of why we can't be shy or afraid or whatever to ask any and all questions of our doctors. They all just seem to be too busy these days to actually analyze & problem solve our complaints, vs. dismissing them. So very happy to hear you are getting some answers, and solutions that seem relatively simple (how about THAT for a change!!). The fear of the unknown is what drives us crazy, so very glad you are getting answers, even if you are the one who had to diagnosis the problem. FT
thank god for the internet. I have had to figure out everything pretty much on my own. To anyone reading this... check everything. Don't count on your doctor or pharmacist to catch anything. Research everything.
dmd
-
Thanks Drummerman
This is really helpful for me too and I'd love to hear how the bone pain, fatigue and other symptoms go with the supplements.
Hazel.
Hi Hazel,
The vit D rx seems to be helping. There were a couple of days where I did more physical activity then I have done in months. Mowing, installing pumps, on and on. But there are days when I feel weak too. Guess its going to take awhile for the vit D to level out.
dm
-
I have started VIT D after reading this , it helps
-
Have you considered adding glucosamine/chondroitin to that? My liver specialist said there were no problems with them being added if one was creaky.
-
Have you considered adding glucosamine/chondroitin to that? My liver specialist said there were no problems with them being added if one was creaky.
I am considering this at this time. Still undecided. Any opinions out there?
dm
-
Hey Drummerman -- I've been taking glycosamine sulfate (1500 mg/day) since the early 2000s upon recommendation by my GP for my osteoarthritis, which most of us have somewhere in our bodies after age 45...... It was fully OK'd by the hepatologist for my Harvoni treatment. My experience has been positive, it does reduce my joint pain, and there is good evidence via various studies. FT
-
From a perspective of someone who had pronounced myalgia starting 14 weeks into treatment I can say that right now one year post treatment I am much stronger than I was in 2013. My fatigue and easy muscle strain is gone I have less night cramps in my legs and very good arm strength and muscle control for a 63 year old fart.
So it makes sense that as the liver heals our metabolism needs nourishment like a growing child.
What I would suggest is making sure you drink milk which is fortified as your liver heals. Even a little careful sun exposure might help. I am not a big fan of supplements because the industry is crooked as hell. It is known that you can overdose on vitamin D and the crooks that peddle the pills don't tell you that! Same thing with iron supplements there is no regulation of the pills so the charlatans are having a field day peddling every thing from water with vitamins to over the counter overdoses! GRRRR!!!!!
Be careful you can just as easily poison yourself as nourish if you listen to their false advertising claims!
Eric
-
Hey there DM, Good to hear from You,
My insurance said they will cover testing for D and E deficiencies on Fridays Labs, so here We go.
Mugwump, Sun is definitely not a problem down here on the Gulf Coast! I love milk and drink it every chance I get. So that is good.
It has been a while and I can't remember the independent Lab that certifies Vitamin and supplement contents. Down here the Texas Bluebonnet brand has been highly regarded and certified.
Once checked out , it is best to opt for a gel cap style rather than a pressed tablet as a lot of times they will not dissolve if pressed to tight. You are right in that a lot of companies take advantage of the system. Due diligence is required. The diet is the best way to take care of most deficiencies!
Tommy
-
Hey there DM, Good to hear from You,
My insurance said they will cover testing for D and E deficiencies on Fridays Labs, so here We go.
Mugwump, Sun is definitely not a problem down here on the Gulf Coast! I love milk and drink it every chance I get. So that is good.
It has been a while and I can't remember the independent Lab that certifies Vitamin and supplement contents. Down here the Texas Bluebonnet brand has been highly regarded and certified.
Once checked out , it is best to opt for a gel cap style rather than a pressed tablet as a lot of times they will not dissolve if pressed to tight. You are right in that a lot of companies take advantage of the system. Due diligence is required. The diet is the best way to take care of most deficiencies!
Tommy
Hey Tommy,
Good to hear from you too! Still taking my vitamin D sup. Going to go in next week and have them retest for vitamin D. I don't want to take all 12 pills cause you can actually get a Vit D overdose... plus its synthetic Vitamin D, which does not get good reviews. I have natural vitamin D that I want to start if I am still deficient plus some sun! now that it is summer. Course it rains almost everyday. Been fighting what I think is strep throat but my doc says the test came back negative, but I feel like the nurse practitioner took the swap sample from the wrong area. She got on both sides of where my tongue attaches in the very back... but if I remember correctly , the swabs I have had done before were from the back of the throat. Anyway, they said my white blood cell count was high and want me to come in on Tuesday to check wbc again. Feel like crap, throat hurts and I have been having migraines much more frequently. Just want to feel good again. 33 weeks since eot, I should feel better than this!
Still taking SamE and it feel it helps my depression. Now that it is summer and I am now retired! I am going to work on improved diet, exercise and getting sun. Should help!
I get my sups from Vitacost and they have a great track record and reviews. I trust them and only take a few sups - fish oil, Calcium/magnesium , samE and and a multivitamin that contains milk thistle.
dm
dm
-
From a perspective of someone who had pronounced myalgia starting 14 weeks into treatment I can say that right now one year post treatment I am much stronger than I was in 2013. My fatigue and easy muscle strain is gone I have less night cramps in my legs and very good arm strength and muscle control for a 63 year old fart.
So it makes sense that as the liver heals our metabolism needs nourishment like a growing child.
What I would suggest is making sure you drink milk which is fortified as your liver heals. Even a little careful sun exposure might help. I am not a big fan of supplements because the industry is crooked as hell. It is known that you can overdose on vitamin D and the crooks that peddle the pills don't tell you that! Same thing with iron supplements there is no regulation of the pills so the charlatans are having a field day peddling every thing from water with vitamins to over the counter overdoses! GRRRR!!!!!
Be careful you can just as easily poison yourself as nourish if you listen to their false advertising claims!
Eric
Thanks Eric, will try the fortified milk!
dm
-
Thanks for posting. I have had low magnesium for almost 6 months now. It came up but now have Vitamin D deficiency. I have horrible weakness in thighs, calves, and arms. Not too much of a deficiency but I guess enough for body to know. I should ask about supplements
-
I was getting worked up for RA and they did every test. I was super low on B12 and D. Many are that are being checked after treatment. I am not tolerating the B12 sublinguals. I love the energy I get but I can't sleep at night! Even the smallest amount makes me wired. So getting on with Vit. D. I take 8000 per day now and am moving on to 10,000 next week. Do not take that D2 stuff your doctor prescribes. IT is synthetic and not good for you. Please research Vit D protocol and you will see that you can't overdose on it. You do need to follow their protocol for best results. Taking only 1000-5000 per day will not really raise your levels enough to help you. So much is out there to read on the protocols. You have to be on higher doses or you will stay low forever. Your suppose to take Vitamin K with it. I haven't had much luck finding out if that is safe for our livers? If anyone gets into all of this and finds out if we are safe with it please report back. Your insurance should cover testing of your vitamin levels. It is not part of a routine blood panel. You have to request it.
-
Cirrhosis: Vitamin K Deficiencies
http://hepatitiscnewdrugresearch.com/cirrhosis-vitamin-k-deficiencies.html
What Are Some Vitamin K Interactions?
As for healthy adults no complications are expected from vitamin K, especially when most of the vitamin K comes from dietary sources. However, pregnant and breastfeeding women should avoid taking vitamin K. People with liver disease should not take Vitamin K supplements. .People who are taking blood-thinning drugs, especially warfarin (Coumadin), should discuss their vitamin K needs with their healthcare provider. They may need to restrict their intake of vitamin K. The purpose of blood-thinning drugs is to keep the blood from forming clots in the veins and arteries. Since vitamin K helps blood to clot, high levels of vitamin K in the diet may work against blood-thinning drugs and reduce their effect. Individuals taking these drugs are encouraged to keep their daily intake of vitamin K steady at or slightly below the IA level. In addition, they should have their international normalized ratio (INR) and prothrombin time (PT), both measures of blood clotting potential, checked regularly.
In addition to interfering with blood-thinning drugs mentioned above, vitamin K may interact with the following:
Some broad-spectrum antibiotics (antibiotics that kill a wide variety of bacteria) may decrease the amount of vitamin K2 produced in the intestines. . Aspirin (salicylates) taken in high doses over a long time may increase the body's need for vitamin K.
Cholestyramine (Questran) and mineral oil may decrease vitamin K absorption.
Quinine may increase the body's need for vitamin K
Orlistat (Xenical, Alli) is likely to decrease Vitamin K absorption.
Olestra, a compound that reduces fat absorption, decreases the absorption of vitamin K. The FDA requires all foods containing olestra to be fortified with the fat-soluble vitamins A, D, E, and K
Sounds like vitamin k is not a concern if you don't have liver disease i.e. cirrhosis but could be dangerous if you already have existing significant liver damage but the best person to ask about taking supplements is your doctor. Those with significant liver damage must check with their liver specialist when considering taking any new medicine or supplement.
-
I am an F2 but won't risk taking it. Worked to hard to get to this point and I refuse to chance it.
-
On a magnesium test! I have read extensively about magnesium testing as for the last few years I have had severe leg cramps, a symptom of magnesium deficiency.
The blood test they do for Magnesium is not accurate according to what I found out and my Dr. confirmed.
Magnesium is mostly stored in the muscles, not the blood, hence you may have enough in your blood stream that is not actually getting to the muscles where it is most needed.
After starting a good magnesium supplement my leg cramps stopped dead in their tracks.
I can't prove that any of this is true but do some research and if you have muscle cramping a good magnesium is worth a try.
Morab
-
Just watched this. Interesting presentation on vit D.
http://www.ucsd.tv/search-details.aspx?showID=29085