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Living with Multiple Myeloma in Hyderabad , India . Random musings .

Tag Archives: Multiple Myeloma


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Time to get a BMA done.

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Went for my Bone Marrow test yesterday. Got admitted to the hospital at 10am.
It’s been 6 months since I had the last test done. My ‘M Spike’ was zero in the last test. During the third month of the last 6 months I was beginning to experience a lot of problems. Diarrhoea, cold and cough , asthma attack , eye infection . I talked to my Oncologist and he noticed that my WBC count was going lower each month during the last few months . We noticed that too.
So my Oncologist decided to stop Lenangio for one month. Each month for the next 3 months my blood counts were monitored while Lenangio was stopped . All the counts have since then improved . I have been continuing all Ayurvedic medications given by Dr Nitin including Curcumin all the while. I would have been worried about stopping Lenangio if I was not using Ayurvedic medications.

The Bone Marrow Aspiration procedure is carried out by my Oncologist himself.
During the last test I was given a stronger local anasthesia after I was informed.But it made me feel drowsy and sick for 24 hours which I didn’t like. So this time I told my Oncologist about the previous symptoms and requested if they can do away with that and he obliged.
The Aspiration was completed within no time. Took just 5 minutes . While preparing the slides with the bone marrow sample the doc commented that the cells look good. I usually ask questions and I asked how could he say that and he lifted the slide up so I can see , I was still lying on the bed, and showed me the cells and says that they look good . All I could see was a very light beige coloured patch on the slide that appeared neat.
My blood samples were also collected for CBC LFT and RFT tests.
This time I was administered Zobone injection after the bone marrow aspiration was done. The injection was given through IV. When I asked my Ocologist about it he said that it strengthens the bone and can be taken once year. Said that the injection is also administered to others with other bone issues too.

My blood work results were also completed by the time the discharge process was completed.
My Hb is 10.3 , better than the previous month as I restarted Iron supplement.
TLC is normal. Creatine is .9 for the first time in last 4.5 years which is good. My Uric acid level is just above the normal . This seems to be a perennial issue due to high cell turnover. Working on it.
Best part is that my Globulin level is within normal range for the first time … too good.

We left the hospital at 4.30pm.

Looking forward to see the results of the Bone Marrow test which will be out in a weeks time.

~Sarve janaha sukhino bhavanthu~


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My Inspiration

I met Dr Gayatri from Delhi on a whatsapp group started by Mr Rahul of yoddhas.com

This group is for all cancer patients and their care givers.

One day in Apr 2015 I shared my experience with  turmeric in the forum.(details of the experience are in another post) . That was when Dr Gayatri mentioned that she too had used Curcumin prescribed by Dr Nitin , an Ayurvedic Doctor from Mumbai. We spoke over phone and she suggested that I get in touch with him on phone. Her voice was strong and energetic. Her story was very inspiring. She was detected with MM more than a decade ago and is now free from any type of medication since last few years after a lot if struggle that included two Stem cell Transplants and several surgeries.

I then spoke to Dr Nitin.
I have been using Ayurvedic medications prescribed by him, including curcumin , since then.

Before I met Dr Nitin I didn’t know where I could get Curcumin in India. I was using Haridra from Himalaya which is Turmeric and not Curcumin.

Thanks to Dr Gayatri for introducing Dr Nitin to me.

I have been doing quite well since then.
I would ask her a few doubts now and then and very patiently she would answer and guide me.

At times I would have certain doubts regarding ayurvedic medication and she patiently answered my questions. She also gave me the confidence and comfort to talk to Dr Nitin without any hesitation.

I met Dr Gayatri recently in Hyderabad. It was nice interacting with Dr Gayatri and her husband. I feel much more energetic after the interaction. The strength and poise in Dr Gayatri is amazing. She is deeply spiritual and her words are soothing and encouraging.
Thank you very much Ma’am.

She has been counselling a lot of patients for the last few years.

May God bless the couple.
Thank you Dr Nitin.

.


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Alternative Treatments for Cancer

 

miracle ahead

People with chronic diseases go for various treatments depending on the faith they have in a particular treatment.  Most use allopathy by default, as the duration of treatment is the fastest ,success rate is highest and the results are quick. Some follow a different treatment based on the experiences of their near and dear ones or when Allopathy has no solution or as a last resort.

But usually for cancers Allopathy is the first and foremost treatment that one opts for as the diagnosis itself happens in the third or fourth stage wherein the disease would have progressed to a large extent and Allopathy would be the best treatment. .

I didnt think of Alternative treatments for two years after I was diagnosed with Multiple Myeloma . I started experiencing side effects of Chemotherapy in the third year and I began scouring the internet for other treatments.

Internet is full of articles on Alternative Treatments . Initially I didnt believe all that was written on various websites and was being said on youtube videos by patients. I found them ridiculous too. Always wondered how it was possible that people are getting cured of Cancer which is not curable . Not just ‘managing’ but they were getting ‘cured’ and have been living for decades without any Allopathic treatment. I felt that these people were just exaggerating , that they wanted people to watch their videos , knowing that many would be looking up , that they were just uploading these videos to get a lot of views/hits. There were websites which talked a lot about a cure but at the end of the page there is a link to a book with a price or some secret methods which confirmed my fears that people only wanted to make money by luring desperate patients.

I wanted to believe all this was true , that there is a way , but was not convinced.

I came across various articles on the reasons for cancer and a cure. Juicing, diet, exercise, detox , supplements, antioxidants , various high frequency protocols, immunotherapy , Ph therapy, effect of yoga and meditation for curing the disease and the reasons for cancer varied from DNA mutations to microbes to lack of Vitamin D , poor diet , stress etc. These are a few of the topics that I was reading and trying to digest . All the information was baffling.

Just when I relapsed , at the end of the third year after my Bone Marrow Transplant for Multiple Myeloma, I came across a blog written by Margaret , a patient with Smouldering Multiple Myeloma. She was using natural supplements and has been successfully ‘managing’ the disease for more than a decade. After reading her blog , all the information and videos that I had seen suddenly flashed across my mind and I began believing all that I had read and seen. Suddenly all of it made sense. I was desperate for an alternative solution.

I talked to my Oncologist if he could recommend any Ayurvedic doctor but he was unaware of any specialist in Ayurveda. Ayurveda is an ancient Indian mode of treatment  which uses natural herbs for curing various ailments. He didnt discourage me from using any alternative treatment and advised me to use ‘Tinaspora Cordifolia’ , a natural immunity boosting supplement.

I recommend everyone to do their own research. Once convinced one has to start incorporating one or more methodologies as per their faith and convenience. One needs to have faith in the treatment and should go all the way and follow the methodologies scrupulously.

I have almost given up food products made with sugar , milk , all purpose flour , rice and also reduced salt intake .All of these comprise a bad diet. These are the five white poisons that Ayurveda recommends to avoid.
I also read that cancer cells feed on sugar. I initially started taking supplements like Curcumin (in the form of turmeric) suggested in Margarets blog , started doing Pranayama and meditation , I also started taking ashwagandha , shigru , punarnava , garlic , had ginger decoction in the morning, eliminated most acidic foods  and lo and behold within three months my MSpike was down to Zero !!

It is nothing short of a miracle.

I was later referred to an Ayurvedic Doctor by another MM survivor and since then I have been using Curcumin and other natural supplements since last one year. Fasting is also part of my regimen. I have been encouraging the use of Curcumin to whomsoever I come across. Curcumin is an extract from turmeric .Turmeric is a spice that is extensively used in South Indian cooking and as a medicine in India for various ailments.

It is one year and 3 months since I started following the new regimen and my M-Spike is in control.

Talk to other patients and their caregivers who follow Alternative treatments make your own decision.

If there is a will to survive , a solution will appear out of the blue. Never give up !!

Have patience and the Miracle will happen.


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Hope is Real ! World Cancer Day , 4 Feb 2016

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Rewind back to Oct 2011.

I enter this building in Apollo Hospital , Hyderabad,India for an injection.
On the building I see ‘Apollo Cancer Hospital’
At the entrance to the lobby there are banners of healthy and beautiful smiling people , a young girl with long hair and an older man saying ‘Hope is Real’.They must be Cancer patients who seem to be leading happy normal lives now . How can Hope be Real ? , what does that mean.. it is the chemo and radiation that helps people to prolong the life, i think to myself and move in.

Half my mind was in denial that I have Cancer. I shut the other half and just went about doing what I am told to do. No one around me uses the word Cancer , not even my Doctor , I mean Haemotologist. No one in the whole building ever used the most dreaded word . Hubby, Dad, Sister, brother, none of the nursing staff, no one utters the word even by mistake.Just like in the movies 😀 . Mom is totally ignorant. She appears normal . Dad must have told her that everything is OK with me. My son was totally ignorant.
Half my mind believes that I am getting treated by a Haemotologist rather than an Oncologist.The word Haemotologist stuck in my head since the day, when of one of the doctors doing rounds , comes to my room and casually mentioned that my reports are being seen by a Haemotologist. I had voluntary got admitted to Apollo to get tests done for my abysmally low Hb count. I was in the hospital for a few days when all the tests were being carried out, including a bone marrow test.

On the third day of getting admitted, the Haemotologist meets me and explains how my plasma cells are misbehaving.That plasma cells become antibodies , but the antibodies in my case are not doing their job and on top of that they dont die after a certain period , where as they are supposed to die. He makes it appear as if it is a mild problem with my plasma cells which is being rectified by giving a few injections .
I assumed that my doctor who is a Haemotologist sits in this building for some other reason and he has nothing to do with Cancer.
After a few such injections spread over two months , my doctor suggests that i shave my hair before we do the Stem Cell Transplant. No questions asked.The Haemotogist explains the whole process of the Transplant and I am excited to go through it all.
We plan a visit to Tirumala and offer my hair . Everyone knows that Chemotherapy causes loss of hair . Since I had very long hair I was advised to get a cut , but I continued to move around in denial.
That this is not Cancer but a similar kind of problem that is treated in a similar way to cancer. I was sure that this is a disease related to the immune system.That my immunity is low because the antibodies are useless.

I never ever looked up the words Multiple Myeloma for almost 2 years after my Stem Cell Transplant .
I , who immediately opens Google to learn more about anything and everything instantly over the smart phone, never had the courage to type these two words. I was reading news, accessing Facebook, Gmail, was watching cookery and gardening videos on YouTube , even looking at house plans and interior decoration, everything on the Internet but never could type those two words.
I was damn scared and shivered at the thought that I may be having Cancer but why is no one uttering that word if I have Cancer.
My Stem Cell Transplant was done during Dec2011/Jan 2012. I took rest for 6 months and joined work .
I then insisted that we should build our house , the house that we were discussing about with an architect and also drew plans just before i was diagnosed. We successfully built our house and moved in. I wanted to complete this project come what may, even if i would live in the house just for a few months. There was some doubt in the corner in my head, that I have Cancer and may not live long. I , my soul , had to leave my body in my house , come what may . That was the strong will power that got me going.
It is one and half year since we moved to our own house in which we now live.
The moment we moved into our new home ,I felt relaxed .Now that the mission was accomplished I had the courage to type those two words on Google.
The search for a cure began . I wanted to live but I didn’t believe what the people in those videos were talking about. That they got cured by following this and that method.
DEC 2014:
Come Dec 2014 and my Oncologist , yes by then I knew for sure that I had Cancer, declares that there is a relapse.
I shudder and then when he says that we can plan for another Stem Cell Transplant after 3 months, I take a breath. It’s been 3 years in Dec 2014 , since I had my first Transplant. So I may get another 3 years after I go for a second one.
I am back home and start getting mentally prepared for a second transplant. Paralelly I start scouring the Internet for more stories on getting healed and the methods of getting cured.
I see a divine blessing in the former of one Mrs Margaret , who had a detailed blog , who had MM too , and how she has been dealing with the problem for more than 10 years using Naturally occurring products like Circumin.
I read most of her posts and started taking similar medicines made by one of the famous manufactures of Ayurvedic products in India.

It’s been a year since I started using Ayurvedic medications and there is no sign of the disease and no Transplant either.
It is 4 years since I was diagnosed with MM.

Under the denial , there was a strong wish and hope to live . The statement ‘Hope is Real’ now makes a lot of sense.
It is the hope of wanting to live , the hope that one can beat cancer , a hope in Alternative medicine , a belief in what was being said by the people in those videos who said that were getting cured, a hope in the Divine, a hope that there is a way out, a hope that continuous research in Allopathy will result in a cure , a hope shown by cancer fighters like Lisa Ray who are leading a glamorous lifestyle.

Yes HOPE IS REAL!!

I hope to tell more and more people like me to have Hope. Hope is THE cure !


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Break from Lenolidamide for one month

Went for my monthly checkup along with CBP, LFT and RFT reports.
My observations on the results were:
TLC count is going down further. Has been going down every month for the last few months. Bad.
Globulin has increased from 4.0 to 4.2 . Whereas it has been consistently decreasing for the last few months.Bad.
Hb has improved from 9.5 to 10 , as I have started taking iron supplement last month.  I am also assuming that the immunity boosting medicine given by my ayurvedic doctor has begun working ☺. Good.
My creatinine level is normal.Good.
ESR continues to be on the higher side .Bad.

On seeing the reports my Oncologist commented on the low TLC . Was happy about Hb and creatinine. Was concerned that Neutrophils were also reducing.

He then looked up and said ‘let’s give a break to lenolidamide’
Saw my previous prescription and said ‘Stop calcium supplement,  stop antiviral tablet’.
He added folic acid 5mg to be taken everyday.
Told me to come back after a month along with the reports. As he was writing I suggested we do a Vitamin D test, which he agreed and included in the tests to be done after 30 days.
I came home and after relaxing a bit looked up on the influence of folic acid and see that it has a beneficial effect on anaemia.
I will be continuing to take Circumin ,  ashwagandha,  garlic oil and other immunity boosting tablets along with folic acid , iron supplement  and B12 .

For the first time in 4 years I am taking a break from the chemo tablets.
I was using Thalix 50mg for the last 3 years and lenolidamide for the last one year.

It does feel good to be off these drugs.
I am expecting a few changes because of stopping lenolidamide.
Will write as and when when I notice any changes.


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Living with Multiple Myeloma since 4 years

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It’s been exactly 4 years since the stem cells in my bone marrow started producing fresh and healthy white blood cells and other cells in the blood , while I was undergoing ‘Stem Cell Transplant’

In the BMT ward , each morning the nurse would take a blood sample to check my blood counts.
All of us were eagerly looking forward to the day when my stem cells would start creating various cells in the blood. The blood test on 1 Jan 2012 revealed the first few white blood cells .
A rebirth for me !

Am here now writing this after 4 years of that event. I am just 4 yrs old now 😉

A lot has happened since then.
There was a relapse in Dec 2014.
But thanks to Ayurvedic medication, I am now free of MM .

I am grateful to Lord Dhanvantari , the father of Ayurveda , who I met in the form of my Ayurvedic doctor.

Yes ‘Hope is Real’ .This was the slogan at Apollo Cancer Hospital in Hyderabad.
I could never comprehend the meaning when I was doing rounds for my check ups .
Those days I was sure this was a fatal disease. I was in a denial mode for two years, in a state of shock and moving around like dead.
But one day I had the courage to type the word ‘cancer’ on the keyboard. To look for information.
Spent a lot of time researching on cure for cancers. Didn’t believe what people wrote  and said on youtube about getting cured.
But I did a U Turn when I relapsed.
I told myself that I have to believe what was being said . That’s when I began to search further and dig deeper for information.
I zeroed in on ayurvedic methods and here I am, free of the disease for the last one year and confident that I will be free forever.

I had the hope and now strongly believe that ‘Hope is indeed Real’ .Hope can do wonders. Hope will show a way. Hope heals and Hope is the cure.


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Results of my Bone marrow test

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It has been 6 months since I had my Bone marrow test done.The previous test was during the end of April this year. In April , for the first time since my diagnosis in 2011 , my M-spike was ‘not seen’. That was the greatest news ever.

I have been taking Circumin and other ayurvedic supplements since January this year. Along with these I am also on a fasting regimen since one month.
I have been avoiding foods made with all purpose flour(maida), sugar , milk and curds.

All the above has definitely helped me in keeping the M-spike in control and this time too the ‘M-spike’ is ‘not seen’.

However , my hemoglobin level is at 9.7 and I need to work on this.

In spite of Hb being low I feel much more energetic than ever. It feels so good to be so active. I have never been this active in a long long time. I am able to concentrate and perform well at work too.

Incidentally today is ‘Dhanvantari jayanti’ along with ‘Dhanteras’.
Dhanvantari is the God/father of Ayurveda.
My heartfelt thanks to my Ayurvedic doctor who has been treating me remotely from Mumbai.

I feel blessed and hope to have a bright and beautiful Diwali.

Happy Diwali !!


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My Diet on fasting and non-fasting days

I am sincerely following the advise of my ayurvedic doctor since last 6 months.
It is now time to change my diet and incorporate ‘Fasting’ along with his medication.

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Diet prescribed by my Ayurvedic doctor for 2 weeks is as follows :

Monday,Friday : Fasting ( I can eat 2 or 3 fruits maximum during the day if feeling very hungry , I can have tea 2 or 3 times. For dinner I can have vegetable soup )
Tuesday, Wednesday, Thursday, Saturday
Breakfast : idli/dosa/upma with 2 egg whites
Lunch : rotis made of jowar/Bajra/Ragi flour with vegetable curry and Dal
Snacks during Tea time : dry fruits/fruit/poha with tea
Dinner : vegetable soup and kichdi (moong dal) before 8 pm and papaya along with a few black raisins before sleeping.

Following foods to be avoided :
-white polished rice
-curd at night (butermilk is allowed)
-fried food
-all purpose flour/maida
-sugar
-Toor dal
-wheat
-Non veg at night

Following foods are allowed: Urad , Moong and chana dal, Brown rice

Being a South Indian , basically from Hyderabad my typical breakfast consists of Idli/, dosa/upma with coconut/groundnut chutney on weekdays . On Sundays it is Puris/chapati/pesarattu . My lunch/dinner usually consists of Rice with vegetable dal curry , vegetable fry , vegetable chutney, curd or rasam .

With the new diet breakfast is not a major problem.
I bought Jowar , Bajra and Ragi flour from the supermarket . Thankfully all are available . What next ?!. My cook nor I have never prepared rotis with these flours. Started watching youtube videos (my favourite pastime) on how to make rotis with these flours. After watching a few videos , it was time to get moving….Oh no ..we failed miserably…the process requires experienced hands to roll the rotis .
What next !?
I was beginning to get worried. What would i eat for lunch ?? 🙁
I am allowed to eat Brown rice but nooo i dont like Brown rice. 🙁

I remembered watching a video on making ragi dosa ..yesss… i searched for ragi dosa again . I then got an idea. If one can make Ragi Dosa surely there would be recipes for jowar dosa and bajra dosa too….yayyy….i did find a few videos…wowww what a relief.. phew .
But dosas would require oil whereas rotis can be made without using oil. I have no choice and decided to use olive oil to make the dosas. My cook and I made Jowar/Bajra/Ragi Dosas for 2 weeks 🙂

Coming to Soup for Dinner.. I never prepare soup at home. But when we go to restaurants we always order soup.
So it was time to look up some videos on youtube. Found a simple recipe and felt happy.
Kichdi is no big deal and not a problem.

I successfully incorporated this diet for 2 weeks.

On the first day of fasting ie Monday ,I had one cup coffee and 2 cups of Tea. I also had 3 fruits during the day. I was so hungry end of the day that as soon as I went home after work I directly went to the kitchen and started preparing vegetable soup.

Aaah the first spoonful of the veggies in the soup tasted so yummy. I finished off the big bowl of soup in no time. Felt full and so good.

The second day of fasting was on Friday and I went home a bit early , relaxed for a while before I made the soup.I had one cup coffee, and 2 cups of Tea during the day. I also had 3 fruits. Had vegetable soup for dinner.

The soup was made with cabbage , carrot, capsicum , baby corn and spinach. Will write about the soup in my next post.

Fasting during the second week was not very difficult. I was able to manage with 2 fruits and 3 cups of coffee/tea 🙂 This time I tried a different method of making soup. Turned out yummy too. I didn’t feel too hungry and I guess my body understood what I am upto and is beginning to help me 🙂

Will post recipes on my dosas/soups soon.

I am so glad I could successfully complete 2 weeks of the new diet and am confident that I can continue if required.
Anything to improve my health and to forever change and strengthen the cells in my body.
This diet is recommended for all Cancer patients but only under the strict supervision of an Ayurvedic doctor.


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Curing diseases by Fasting ?!!

I am currently taking ayurvedic medication along with Lenalidamide 5mg for Multiple Myeloma.
My ayurvedic doctor has advised me to fast twice a week on Monday and Friday.
I have been fasting since last week and today is the second day in this week.
I can sip warm water through out the day. I can also take tea/coffee( 2 or 3 times) and fruits ( 2 or 3 ) if i feel very hungry. I am allowed to take vegetable soup for dinner. I started fasting without asking any questions.

This is my food for the day.
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I have never fasted in all my life and always wondered why people fast , especially when it is linked to religion and rituals.

I have been able to manage last week and this week but a lot of questions have been popping up in my head.
What if i become too weak in the process? what if my immune system weakens further? What will my Oncologist say if i tell him about my fasting? Can i take allopathy medicines during fasting? Am i doing the right thing ?

My ayurvedic doctor has been asking me for the feedback as to how i feel during and after the fast and i did express my concerns this morning.
He told me to read an article on ‘fasting before chemotherapy’ in the ‘Biomed journal’ . Googled for these words and found a few links .
Read the information in one of the links http://www.biomedcentral.com/1471-2407/15/652 . Found the article too technical for me but got a gist of what was being researched. Seemed interesting. The cells which get damaged due to chemotherapy recover faster if a patient has been fasting prior to chemotherapy.
Also protects normal cells from the side effects of chemo.
Came across articles where people got cured of gall stones , cancer after fasting.
Other articles suggest when the body is on a fast all the cells go into a ‘repair’ mode . The DNA repairs itself and the result is a stronger immune system. Fasting enhances the functioning of cells and kills the cancerous cells.

Wowww sounds great !!

While reading this my mind wandered to know more about Ayurveda and fasting. Googled and found some interesting information. Ayurveda mentions cleansing the body of toxic wastes that have accumulated in the body, balancing of doshas , improving the digestive system etc.

I am now convinced that fasting is a must.Fasting has always been a part of life for the devout and intrinsic to most religions , although common man fasts with an intention of salvation rather than for health, which is a side effect of fasting anyway :).

“The best of all medicines are rest and fasting.” – Benjamin Franklin.


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Anemia, Hb and Ferritin levels

Post my Autologous Stem Cell Transplant for Multiple Myeloma in 2012, i had been continuously taking iron supplements in the form of a tonic.

I would have consumed several gallons of the dark liquid in the last 3 and half years. In spite of this my Hb count never increased beyond 10.5 during all these years.

All the while i was suspecting that the culprits are the chemo drugs that i was taking , namely Thalix 100mg and Lenalidomide 5mg. That these drugs are killing my Red Blood Cells along with other cells. I was simply glad that the count was not too bad after all and didn’t bother too much about it. However  I did express my concern to my oncologist a couple of times  and he said i can continue with the iron supplement and also suggested i should take CRESP injections. One injection every two weeks.

My energy levels haven’t been good in the last few months and dropped to 10.2 . A few days ago i mentioned the same to my ayurvedic doctor too and he advised me to get ‘Iron studies’ done. When i asked him if it is the same as a test for Hb , he said that the test is about ‘iron binding capacity’ and ‘Ferritin levels’ .

I went for the test a few days ago.It is a blood test.

The results showed that my Ferritin levels are above the normal range. It is around 266 ng/mL . Whereas the normal range is between 12-150 ng/mL for females. A value greater than 1,000 ng/mL is dangerous.

I scanned the report and mailed it to my ayurvedic doctor.

When i spoke to him he said that my  low Hb levels are due to the chronic inflammation in my body . He said he would send me another set of ayurvedic  medications which will reduce my inflammation and then my Hb levels would automatically improve. I am continuing to take Curcumin and am currently at 3 gms per day.

I am yet to receive the new medication.

Meanwhile i did a little research on the net regarding ‘Ferritin’ and learnt that the level indicates the quantum of ‘iron stores’ in the body. My result indicates a large amount of iron reserves in my body which is not getting absorbed and not getting converted into red blood cells.

Higher levels of iron stores are not good for the body and can lead to other complications like liver/heart failure. I have now stopped taking iron supplements as per my ayurvedic doctors advise.

It is not advisable to take iron supplements in excess. Check your Ferritin levels too and determine the actual reason for your consistently low Hb levels.