Intro Middle Aged Female BTM Bloodwork

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Intro Middle Aged Female BTM Bloodwork
« on: July 30, 2017, 05:18:15 PM »
Hello Everyone!

I am so thankful to find this resource for thal minors.  I've already done a lot of searching and reading on the forum and learned so much.  I visited this place 10+ years ago when I was trying to understand BTM symptoms..  now I am entering into middle age and having a whole new array of medical mysteries and felt I needed to re-connect.  I put my background/symptoms/supplements in my profile.  I recently decided to try a naturopathic Dr to try to help with nutrition/supplements/accupuncture...  I have my first regular appointment tomorrow but I already got my blood results and I have pasted them in below.

I know that Hb is something we look at for thal "status" and vit D/B12/folate.  I'm not sure what we can learn from all of these numbers.  Can you help?  I'm also really curious why my folate is top of the range although I do not currently take a folate or B complex supplement.  I'd say my diet is "OK" but not "wow".  I try to watch my caloric intake, not eat out too much, avoid caffeine, low  sugar, and have fresh fruit/veg/whole grains daily.   I'd say better than the average American diet but not yet into the serious "health conscious" arena.

Also, my platelets always seem to run high and my TSH is high despite low normal T3, is this normal for BTM?

Thanks,
Amy

CBC With Differential/Platelet
 WBC 7.6 x10E3/uL 3.4 - 10.8 01
 RBC 5.39 High x10E6/uL 3.77 - 5.28 01
 Ovalocytes present.
 Microcytes present.
 Burr cells present.
 Hemoglobin [bgcolor=#FFFF00]10.8[/bgcolor] Low g/dL 11.1 - 15.9 01
 Hematocrit 34.8 % 34.0 - 46.6 01
 MCV 65 Low fL 79 - 97 01
 MCH 20.0 Low pg 26.6 - 33.0 01
 MCHC 31.0 Low g/dL 31.5 - 35.7 01
 RDW 23.0 High % 12.3 - 15.4 01
 Platelets [bgcolor=#FFFF00]429[/bgcolor] High x10E3/uL 150 - 379 01
 Adequate
 Neutrophils 54 % 01
 Lymphs 36 % 01
 Monocytes 7 % 01
 Eos 2 % 01
 Basos 1 % 01
 Neutrophils (Absolute) 4.1 x10E3/uL 1.4 - 7.0 01
 Lymphs (Absolute) 2.7 x10E3/uL 0.7 - 3.1 01
 Monocytes(Absolute) 0.5 x10E3/uL 0.1 - 0.9 01
 Eos (Absolute) 0.1 x10E3/uL 0.0 - 0.4 01
 Baso (Absolute) 0.1 x10E3/uL 0.0 - 0.2 01
 Immature Granulocytes 0 % 01
 Immature Grans (Abs) 0.0 x10E3/uL 0.0 - 0.1 01
 Hematology Comments: Note: 01
 Verified by microscopic examination.
Comp. Metabolic Panel (14)
 Glucose, Serum 88 mg/dL 65 - 99 01
 BUN 16 mg/dL 6 - 24 01
 Creatinine, Serum 0.83 mg/dL 0.57 - 1.00 01
 eGFR If NonAfricn Am 87 mL/min/1.73 >59
 eGFR If Africn Am 100 mL/min/1.73 >59
 BUN/Creatinine Ratio 19 9 - 23
 Sodium, Serum 141 mmol/L 134 - 144 01
 Potassium, Serum 4.4 mmol/L 3.5 - 5.2 01
 Chloride, Serum 106 mmol/L 96 - 106 01
 Carbon Dioxide, Total 20 mmol/L 18 - 28 01
 Calcium, Serum 9.2 mg/dL 8.7 - 10.2 01
 Protein, Total, Serum 7.6 g/dL 6.0 - 8.5 01
 Albumin, Serum 4.3 g/dL 3.5 - 5.5 01
 Globulin, Total 3.3 g/dL 1.5 - 4.5
 A/G Ratio 1.3 1.2 - 2.2
 Bilirubin, Total 1.8 High mg/dL 0.0 - 1.2 01
 Alkaline Phosphatase, S 49 IU/L 39 - 117 01
 AST (SGOT) 30 IU/L 0 - 40 01
 ALT (SGPT) 27 IU/L 0 - 32 01
Thyroid Profile II
 TSH [bgcolor=#FFFF00]5.520[/bgcolor] High uIU/mL 0.450 - 4.500 01
 Thyroxine (T4) 7.2 ug/dL 4.5 - 12.0 01
 T3 Uptake [bgcolor=#FFFF00]27[/bgcolor] % 24 - 39 01
 Free Thyroxine Index 1.9 1.2 - 4.9
 Triiodothyronine (T3) 105 ng/dL 71 - 180 02
Vitamin D, 25-Hydroxy[bgcolor=#FFFF00] 45.2[/bgcolor] ng/mL 30.0 - 100.0 01
Thyroid Peroxidase (TPO) Ab 14 IU/mL 0 - 34 02

Iron and TIBC
 Iron Bind.Cap.(TIBC)           271 ug/dL 250 - 450
 UIBC                                 162 ug/dL 131 - 425 01
 Iron, Serum                       109 ug/dL 27 - 159 01
 Iron Saturation                    40 % 15 - 55
Vitamin B12 and Folate
 Vitamin B12                      [bgcolor=#FFFF00] 910[/bgcolor] pg/mL 211 - 946 01
 Folate (Folic Acid), Serum  18.4 ng/mL >3.0 01
 Note: 01
 A serum folate concentration of less than 3.1 ng/mL is
 considered to represent clinical deficiency.
Ferritin, Serum 95 ng/mL 15 - 150 01

*

Offline Andy Battaglia

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #1 on: August 02, 2017, 12:06:48 AM »
Hi Amy,

It's actually beneficial to thal minors to have B12 and Folate levels that are high, so yours being high is good. Your D level is also in a good range. It could still go higher without posing any problems. As you get older, the importance of maintaining a nutritious diet becomes more important, and your numbers say you're doing well with it. Your body seems to be absorbing plenty of folate and B12 from your diet to keep up with the demand that overproduction of red blood cells creates. Your iron numbers are also good, so no supplements should be used. Platelets often test high in thal minors, part of it being the overactive bone marrow producing more platelets, too and the other part is that often pale irregular red blood cells are counted as part of the platelet total, making the number look higher than it really is. It's difficult to tell if low thyroid is connected to thal minor (it may be, just as it is in major), because there is a high rate of hypothyroid in the general population, so it could be coincidental to thal.

The more I hear from thal minors who are in their 40's or older, the more the problem of adrenal fatigue is mentioned. Adrenal fatigue is a known issue in a high percentage of thal majors, so like a lot of other problems, is there any reason that thal minors would not also suffer from a less severe version of the same thing? The exact cause in major is not known for certain, but it is speculated that hypoxia, lack of oxygen, plays a significant role, and specifically, lack of oxygen to the hypothalamus. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4393555/ 
Thal minors regularly complain about numbness and tingling in the extremities, and this is directly related to reduced oxygen reaching the extremities. Thal minors live with chronic low Hb levels, which means they cannot carry the same amount of oxygen as non-thals. I don't think we can make any assumptions that this does not cause problems for thal minors, as the medical industry wants to. This also brings me back to the thyroid and if one gland has reduced function because of reduced oxygen supplies, why wouldn't other glands also be affected. Perhaps, there is a connection between thal in general and thyroid disorders.
There is a long discussion that includes the topic of adrenal fatigue at http://www.thalassemiapatientsandfriends.com/index.php/topic,4275.0.html

I want to mention that I take magnesium right before bed at night and it has helped me sleep a lot better. I also take my zinc and copper supplement at the same time, so I'm not sure if that adds to the effect. Taking zinc, while also working to raise my vitamin D level, has greatly improved my immune system. A B complex might also help with the stress. What I would suggest beyond what you mentioned is natural vitamin E and L-carnitine or L-arginine and glutathione (considered to be a super antioxidant). L-carnitine is needed for the production of nitric oxide, NO in the body. NO makes red blood cells healthier and also is needed to maintain the flexibility of blood vessels. Without enough NO, blood vessels lose their elasticity which causes the heart to work harder and makes it even more difficult to fully oxygenate the body. I believe L-carnitine to be one of the most important nutrients for all types of thalassemia, especially as patients grow older.

The main treatment for thal majors who have adrenal fatigue is oral replacement therapy with cortisone acetate. I don't know if it would be appropriate for thal minors or if any doctors would be willing to try it. As usual, thal minors are left to fend for themselves. Our understanding of what to do about it increases with every patient report.







Andy

All we are saying is give thals a chance.

Re: Intro Middle Aged Female BTM Bloodwork
« Reply #2 on: August 02, 2017, 03:08:04 PM »
Hi Andy,

Thank you so much for replying.  I will read all of the links.  I started taking vitamin E this week when I read your recommendation in the big "nutrition" thread.  The entire notion of BTMs needing a high anti-oxidant diet due to the oxidative stress from hemolisys and how that would become worse as we age (with increasing oxidation from normal aging) makes so much sense to me.

I got my other test results back from my ND on Monday and it seems that I do not have a chronically low cortisol as we may have expected... the results showed that my daytime/evening cortisol was in normal range but my morning cortisol had gone up to 72 (ref range 13-24)!  So, it appears that soaring night time cortisol is what is causing my insomnia.

I cannot fully describe how tired and scared I am as the problem is getting worse and I don't think the ND has a clue what to do about it either.  She is waiting to get my fasting insulin test back to see if there is some blood sugar dis-regulation going on.  I have been getting very little sleep these past few nights..  I don't get to sleep until 2 or 3 and I am awakened by noise in the house by 6:30-7.  Once I am awakened I cannot fall asleep again.  I feel like a zombie.  I almost drove to the ER last night out of desperation.

ND gave me this combo supplement called "cortisol manager" by Integrative Therapeutics.  I took one at bedtime last night and I seemed increasingly wired after I took it.  I thought I was having some sort of stimulative (paradoxical) reaction to one of the ingredients so I went out and just bought the most appropriate ingredient (PS) separately.  I took it yesterday starting at 4 pm and had an increasing sense of calm and relaxation through the evening.  I took another one at 10pm and felt increasingly restful and was yawning and felt very positive that I would sleep.  When I went to bed I felt relaxed and my heartbeat was not noticeable but I struggle to make the gap between relaxation and sleep.. my senses/brain don't want to turn off.  I think I slept lightly for an hour or so and when I woke I started to feel the stronger palpitations and brain increasingly wider awake and I had to get up and urinate several times (full bladder although I didn't drink much in the evening).  I eventually went to my quiet room and fell asleep an hour or two after taking benadryl and 1000 mg vit C and 200 mg Mag... then woke at 7am to noise and couldn't go back to sleep.

From what I've read the therapeutic dose for PS is about 400 mg/day so maybe I didn't take enough (2 100mg capsules in 1/2 day since I just started it).  I also bought some Inositol to try.

I also got my blood-based "food sensitivty" test results.... Some hot spots but the biggest thing is that I was highly sensitive to all dairy products (which I eat multiple times/day).  Whey protein was particularly high (over 2000 when a "high" reading is 250).  So, ND said to eliminate all of the high reactivity foods and I started a dairy-free diet yesterday just to add to all of the chaos.

I am not sure what to do at this point.  I was surviving when I was having the really bad nights only 2-3 days per week now I am having them multiple days in a row.

If anyone has thoughts on this I would be very appreciative.

Best,
Amy

Re: Intro Middle Aged Female BTM Bloodwork
« Reply #3 on: August 24, 2017, 04:56:42 PM »
Hi Amy,

You sound a bit like me (also female in my 40s) especially where sleep interruption is concerned. Same feeling of not being able to calm down or get my heart to slow down enough to let me drop off to sleep. I'm just starting down the road of supplementing so I have no advice there, but like yourself I'm awakened by small noises and have trouble getting back to sleep. I find that using earplugs helps a lot. Once you get used to the sensation of having something in your ear, that is. I usually sleep with one earplug so I can hear if my daughter gets up and needs something, but it's enough to drown out most of the sounds that normally wake me.

Also, what is the PS you mention below as the component of the cortisol manager you are trying?

Adriana

Re: Intro Middle Aged Female BTM Bloodwork
« Reply #4 on: August 25, 2017, 12:30:51 AM »
Hi Adriana,

Thanks for your reply.  I can't tell you how good it is to hear from someone else who is going through this.  Have you ever had a 24-hour saliva cortisol test?  I think you may get it directly from the lab or from a naturoptathic doctor (not a regular doctor).  Costs about $120USD Mine showed high-normal cortisol during the day but it spiked very high between midnight and 8 am.  Since cortisol rises to wake us up and mine was going too high too quick it is no wonder that I have had trouble going to sleep and staying asleep.  I am starting to work with a MD who specializes in adrenal issues.  He uses PS and a bunch of other techniques and supplements to restore cortisol function.  I am hoping for the best.   His is an MD but "alternative" and out of state so I have to pay for everything without insurance.

In the meantime I learned that vitamin B5 (pantothenic acid) is really good for stress (cortisol) and for anemia...  I tried it and it has helped me with the heart palpitations tremendously (my heart went from a diesel to an electric car) and with the "sound sensitivity" I had developed...  I felt very agitated hearing certain sounds, even some normal voices.  I worked my way up to 200 mg/day and saw results but it was not optimal.  I started to see solid and longer lasting results with about 500 mg/day.  I try to take it all in the morning or mid-afternoon.  The B5 also cleared up a problem with my right eye being slightly more dilated than my left.. it happened after I had iritis (inflammation of the iris) in the right eye.  They eye specialist looked at it and said the eye was functioning normally even though it didn't match my left and that we would just see how it goes.  It did not improve much until I started taking the B5.  So, in addition to my heart and sound sensitivity I could also tell if I needed more B5 just by looking at my eye!  I had to increase my magnesium when I increased the B5.

Anyway, here is some information on "PS".  I definitely felt an effect.  Maybe if I took the right dose or for a longer time it would have solved more of my sleep issue.  It is supposed to help your the cortisol "system" work more effectively... this is out of whack in some people (associated with stress, etc)

"PS" supplement:
https://examine.com/supplements/phosphatidylserine/

I have tried using ear plugs to sleep but never really got used to the feeling.  I may have to try again.  I also bought some "sleep headphones" which is like a fleece headband with flat speakers in them.  It connects to my phone and I play various music/soothing sounds sometimes when I am having trouble sleeping or I am expecting early morning noise that might wake me up.  I have a "sound machine" app called relax melodies.  It also has something called binaural beats which are stereo frequencies that have proven effects on the brain... You can choose frequencies for concentration, deep sleep, relaxation...   I do think they help me but you have to use head phones to get the sound directly into each ear.

I am also doing a breathing exercise where you inhale and exhale by extending and contracting your belly instead of the chest while breathing through the nose..  you might find more information on it by searching "adrenal breathing" or "belly breathing.  it is slow and relaxed and is supposed to help your body come into a lower adrenaline state.  I think it helps.

Please keep in touch.  I will post back periodically on my progress.

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Offline sofear

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #5 on: August 25, 2017, 07:06:27 AM »
Thalassemia (minor) is said to have been developed as a natural defense against malaria, but that seems to have made it necessary that the hematopoiesis changed in a way that would not be beneficial in any way if it wasn't to protect from a serious disease. I feel like the additional strain on the body due to it compensating for the reduced lifespan and elevated turnover rate of red blood cells in order to keep the amount of hemoglobin around a normal range should really be considered.

Pointing at (near-) normal hemoglobin values, especially in thalassemia minor, feels like watching two otherwise identical cars both drive 50 km/h in a 50 km/h zone, but one car at 3,000 RPM and the other at 6,000 RPM. I'm sure the latter is going to have more problems after a while.

Re: Intro Middle Aged Female BTM Bloodwork
« Reply #6 on: August 25, 2017, 03:53:23 PM »
"Pointing at (near-) normal hemoglobin values, especially in thalassemia minor, feels like watching two otherwise identical cars both drive 50 km/h in a 50 km/h zone, but one car at 3,000 RPM and the other at 6,000 RPM. I'm sure the latter is going to have more problems after a while."

I really identify with this statement.  I feel the stress on my body even more as I am aging.  The symptoms all are so "non-specific" that it is hard to get help from the medical community.  I am so glad that we have this board to at least share experiences and coping mechanisms when they are found.

One good thing to report is that I inherited BTM from my father who is turning 85 years old next month.  He is in reasonably good health save some muscle/spinal issues that make him slow to move around.  He has lived his life somewhat in the "slow" lane (a quiet and rather low intensity lifestyle) compared to a typical adult but it has served him well.  I now am at the age my father was when I was young and I understand some of the things he was coping with because I am feeling them now.

Best,
Amy

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Offline Andy Battaglia

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #7 on: August 26, 2017, 07:21:11 PM »
Sofear, the rpm analogy is beautiful. It is exactly how I think about thal minor. What happens to the bone marrow after years of excessive activity (RPM's)? I don't understand how doctors can think this hyperactivity of the bone marrow would not have repercussions.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #8 on: August 26, 2017, 07:22:49 PM »
Amy,

Thanks for sharing the information about vitamin B5. That is quite interesting and will be added to the advice I give. I have also recently read about a connection between low B-12 and high cortisol. Seems the B vitamin famliy needs more attention.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #9 on: August 28, 2017, 10:21:23 AM »
Hi Amy,

It's actually beneficial to thal minors to have B12 and Folate levels that are high, so yours being high is good. Your D level is also in a good range. It could still go higher without posing any problems. As you get older, the importance of maintaining a nutritious diet becomes more important, and your numbers say you're doing well with it. Your body seems to be absorbing plenty of folate and B12 from your diet to keep up with the demand that overproduction of red blood cells creates. Your iron numbers are also good, so no supplements should be used. Platelets often test high in thal minors, part of it being the overactive bone marrow producing more platelets, too and the other part is that often pale irregular red blood cells are counted as part of the platelet total, making the number look higher than it really is. It's difficult to tell if low thyroid is connected to thal minor (it may be, just as it is in major), because there is a high rate of hypothyroid in the general population, so it could be coincidental to thal.

The more I hear from thal minors who are in their 40's or older, the more the problem of adrenal fatigue is mentioned. Adrenal fatigue is a known issue in a high percentage of thal majors, so like a lot of other problems, is there any reason that thal minors would not also suffer from a less severe version of the same thing? The exact cause in major is not known for certain, but it is speculated that hypoxia, lack of oxygen, plays a significant role, and specifically, lack of oxygen to the hypothalamus. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4393555/ 
Thal minors regularly complain about numbness and tingling in the extremities, and this is directly related to reduced oxygen reaching the extremities. Thal minors live with chronic low Hb levels, which means they cannot carry the same amount of oxygen as non-thals. I don't think we can make any assumptions that this does not cause problems for thal minors, as the medical industry wants to. This also brings me back to the thyroid and if one gland has reduced function because of reduced oxygen supplies, why wouldn't other glands also be affected. Perhaps, there is a connection between thal in general and thyroid disorders.
There is a long discussion that includes the topic of adrenal fatigue at http://www.thalassemiapatientsandfriends.com/index.php/topic,4275.0.html

I want to mention that I take magnesium right before bed at night and it has helped me sleep a lot better. I also take my zinc and copper supplement at the same time, so I'm not sure if that adds to the effect. Taking zinc, while also working to raise my vitamin D level, has greatly improved my immune system. A B complex might also help with the stress. What I would suggest beyond what you mentioned is natural vitamin E and L-carnitine or L-arginine and glutathione (considered to be a super antioxidant). L-carnitine is needed for the production of nitric oxide, NO in the body. NO makes red blood cells healthier and also is needed to maintain the flexibility of blood vessels. Without enough NO, blood vessels lose their elasticity which causes the heart to work harder and makes it even more difficult to fully oxygenate the body. I believe L-carnitine to be one of the most important nutrients for all types of thalassemia, especially as patients grow older.

The main treatment for thal majors who have adrenal fatigue is oral replacement therapy with cortisone acetate. I don't know if it would be appropriate for thal minors or if any doctors would be willing to try it. As usual, thal minors are left to fend for themselves. Our understanding of what to do about it increases with every patient report.








Dear Andy,
How many supplements/pills are you taking daily?
Start listening your body, it always gives signs

*

Offline Andy Battaglia

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #10 on: August 28, 2017, 09:18:21 PM »
I take vitamin C, vitamin E, turmeric, B complex, L-arginine, Glutathione, magnesium, copper and zinc, and probiotics daily. I take 50,000 IU vitamin D weekly. I take B12 any day when I know I will be more active at work. I will also occasionally take others, like glutamine and some herbal supplements.
Andy

All we are saying is give thals a chance.

*

Offline Dharmesh

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #11 on: August 29, 2017, 05:56:35 PM »
I take vitamin C, vitamin E, turmeric, B complex, L-arginine, Glutathione, magnesium, copper and zinc, and probiotics daily. I take 50,000 IU vitamin D weekly. I take B12 any day when I know I will be more active at work. I will also occasionally take others, like glutamine and some herbal supplements.
OMG !!!!
Too much....

Just for laugh...do you eat food?
Start listening your body, it always gives signs

*

Offline Andy Battaglia

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Re: Intro Middle Aged Female BTM Bloodwork
« Reply #12 on: September 02, 2017, 11:47:44 PM »
Yes, I do. I follow a vegetarian diet and try to eat mostly natural whole unprocessed foods.
Andy

All we are saying is give thals a chance.

 

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