Okay girls. Need your help.

Anonymous

I know we've talked endlessly about Vit D and which test to have. Well, the test I had is Vitamin D, 25-Hydroxy. I'm too lazy to look it up and need your input anyway. My level was 34.8 ng/ml (hard to read this it's so light) with limits of 32 - 100. And says, "Recent studies consider lower limit at 32.0 ng/ml to be a theshold for optimal health.

Seems like this isn't the test you all have recommended.

Now to the thyroid test. I'm on 125 mcg of Synthroid. My test score -- TSH (which was flagged) 0.197 uIU/mL with limits of 0.350 - 5.500. Now that's low, but how low is low? On to the T4, Free (Direct)) -- 1.62 ng/dl with limits of 0.61 - 1.76. So, with those two scores taken into accout, WHAT DOES ALL THIS MEAN? Doc is saying bloodwork within normal limits.

Everything else looked okay. He was supposed to do a "sugar level" but I can't find it. Hmmmm...

Thanks IN ADVANCE for your help.
Shirley

LizM

I had my vitamin D levels checked over a month ago and they used the Vitamin D 25 hydroxy test so I think you had the right one. My levels were 48 and considered normal. I think you are close to low and you may want to talk to your oncologist about increasing your vitamin D intake. I have heard some say their oncologists like their levels to be high normal between 80 and 100. I can't answer about your other tests as I have not had my thyroid levels checked.

Anonymous

Thanks, Liz. My pcp ordered the test and he has no idea the discussions we have had nor has he read the research. I'm going to mail him some stuff that we've "learned." He says he learns from his patients. I think it will also benefit the gals that work in his office.

And, I did find the test for my sugar level or whatever you want to call it -- Hemoglobin Alc. I looked it up on the internet and it told me what that test was.
However, the "internet's" score for normal is higher than my lab calls for. It was 8.0. My score was 5.8 with limits of 4.5 - 5.9. So, if the lab that did my bloodwork is correct I think I need to watch my sugar intake. I only had two cups of coffee with an artificial sweetner before the test. I drink sweet tea all the time (my bad )
Shirley

Jorf

I'll preface this by saying you need to talk more with your own provider about this but..since this is in the realm of what I do for a living....

The 25(OH) D is the right test and you have the right result. 1000 U D3 is the amount to take to keep it there.

The TSH is too low. That means you're on too much thyroid replacement. You don't want it to be low if for no other reason than it can be harmful to your bones. Also your heart. Anyway, it should be within the normal limits. Any time you have a dose change wait at least 8 weeks to have it rechecked. The T4 is normal but that's a less sensitive test than the TSH. Let me know if you want an explanation of that - I don't have the time right now.

Do you have diabetes? The hemoglobin A1c is ONLY accurate as a tool for watching the control of people with diabetes. Theirs should be under 6.5%. It is not a diagnostic test. That said, sometimes we'll do one in someone who has a pre-diabetes condition to get an idea of how they're doing. Better to do a fasting and (everyone's different about this and this is my own method) a test two hours after a high carb meal.

Hope that helps a little. I'll be glad to go into more detail when the guy from the car place isn't about to pick me up!

Julie

JoanofArdmore

Shirley, here's the best help I can give you, since I'm too boxed-in now to go dig up my folder of test scores.
A sister gave this, and I've found it invaluable!!

http://www.labtestsonline.org/

You put in the test, it tells you EVERYTHING!

Have fun!

Anonymous

Oh, wow. Thanks ladies.

Sheri, for some reason he didn't do a glucose test. He's done that in the past with another "sugar" test. I don't know if was the A1c.

Thanks Joan for the link. I looked at it and it thoroughly explained everything.

Oh, Julie, what do I do? Do I call my pcp and say, hey doc, you need to lower my synthroid? Should I see and endocrinologist? Do the two scores, Free T4 and TSH, together make a difference on what dosage of synthroid they prescribe.

Geez, I feel like we ladies have to become doctors in order to know what the heck or how much meds we need to take. Why can't I go back to just trusting the doctors!? It was so much easier that way.
Shirley

mcgaffey

I am off to my endocrinologist this a.m. with my new blood test. She increased my synthroid about 3 months ago and the range looks good now. I was on the very low side. I also had the onc center test my estrogen levels so I would have a baseline for Arimidex. And I did a dexascan a month ago as well. I am going to ask her about the D test this a.m. and anything else she suggests. She is coming from the U.K. and is young. The way I look at it is I need my doctors. They have the training but I am my own best advocate. And I love you guys as well!

Jorf

Shirley, I'd suggest having anything non-cancer taken care of by your primary care. If that person thinks that you need an endocrinologist (not everyone with simple hypothyroidism needs one) then go. If YOU feel like you need one, if only for one visit to see if they think your PCP is on the right track, then you should go to see one. I'd say that oncologists are not the experts on dealing with primary care issues. As a specialist I always just want to deal with my specialty. But I'm pretty straightforward on that - "this is not my area of expertise, I'm sorry I can't help you with it but you're better served discussing it with your PCP."

You're so right about not trusting the providers. But, I think going to the right person about the right thing can help. Not always but CAN.

JoanofArdmore

I understand that the TSH test isnt the be-all and end-all of answers.(Unless it's WAAAAAY out of line).
My onc himself raised my syntheroid dose in March or so.I was looking cretinesque and feeling fatigued.
I had been varying 150mcg with 175 mcg, every other day.My PCP invented this dose-it kept my TSH perfect range.(Perfect range HAS been raised now).
Anyway, my onc put me on 200 mcg syntheroid.
I felt better.
But had occasions of tachycardia.Dont like that right now.
Because of that, in May, he changed my dose to 175.
But he said:
"It's OK.Some people like to feel more edgy"(!!!!) punctuation mine.
I didnt know this!**I** actually prefer to feel edgy than sloth-y.
I happen to be edgy enough right now, getting ready to move.

So Shirley, my point--if you feel good on the higher TSH, no big worry.(The endocrinologist I saw said this too.)

mcgaffey

I can't imagine not going to an endocrinologist to check your levels and make recommendations. Mine will have me back in 3 1/2 months just to keep a check on the reaction of my body to my new drug, Arimidex. Usually, it is only yearly.

PamsPromise

I had been feeling poorly since January and nothing seemed to help. I seemed to hurt everywhere. I do have rheumatoid arthritis but this was different. Finally my rhematologist ordered a vitamin D level and it came back at 7. He said it was the lowest level he had ever seen and put me on 50,000 IU a week of vitamin D. It's been 2 months now and I'm feeling better, not in as much pain and able to walk better. I was actually getting back to normal..at least until my abnormal mammo and US from a week ago. Biopsy is planned for July 18. I think my low vitamin D level is partly to blame if I have BC. Any comments on that? Thanks, Pam

linapril

Hi Pam,

I recently found I'm Vit D deficient with results of less than 4 and my endocrinologist put me on the exact same dose of Vit D you are taking. I’ve been on it about a month and a half.

I’ve only had bone and joint pain since being on Arimidex beginning 10-2006 and have recently felt better which I thought maybe was due to a systemic enzyme I recently started but maybe it is the Vit D instead that is helping with the pain.

When my daughter next goes to the doctors I'm insisting she have her Vit D tested !

By the way, no one in my conventional health care team suggested my Vit D to be tested, it was ordered by an alternative health care provider that I met with.

Just this morning I ran across this article regarding Vit D acknowledgment and how it differs between Canada and the US. Very interesting.

http://www.newstarget.com/021896.html

PamsPromise

That article was a real eye opener. I can't say I agree with all of it, especially not getting mammograms, but the majority of it I agree with. Sadly it made a lot of sense to me, especially about the millions made off treatments for cancer and the reluctance to stop that kind of revenue even at the expense of human lives.

I drew from your post that you have been diagnosed with BC and have been treated. My question for you is...did you have BC before your vitamin D level was discovered or after?

The vitamin D supplementation that I have been taking has virtually changed my life. Since January I had been to my PCP several times telling her that I could feel my body deteriorating as every day I was hurting more and feeling weaker. I even thought my alertness was even compromised as I couldn't concentrate as well. It got so bad that I quit my job in April. My PCP never recommended the test either although she did order MRI's and other blood work. I finally traveled 100 miles to my rheumatologist in April (I literally had to lay down in the back seat to get there as my hips and shoulders hurt so bad I couldn't sit and even laying was painful). I truly thought I was going to dye and no one was going to know why. At any rate, he ordered blood work including the vitamin D level. He also diagnosed fibromyalgia. I'm a nurse and I simply hate that DX. I think its a cop out for physicians and merely a DX used when they can't find anything else. I've heard it exists and maybe it does but I knew I didn't have it. Well, on my return trip to his office 2 weeks later he showed me the results from the blood work he ordered and about the low vitamin D. My calcium strangely enough was normal, as was my thyroid. My liver enzymes were slightly elevated but they have been for 20 years and I think its just normal for me. He said the vitamin D deficiency was easily treated and gave me the RX. I can tell every week that I'm getting stronger, my hips don't hurt anymore and my left shoulder is better. My right shoulder in June showed on MRI full rotator cuff tear. I have no idea how I did it.

I don't blame you one bit about having your daughter checked. I think its imperiative. If only I would have known I would have done it sooner and possibly could have diverted this BC scare I am in the middle of. I bet you were hurting so bad with a level of 4. Bless your heart. I would be willing to bet that the vitamin D has a lot to do with your feeling better.

Take care and thanks for sharing with me.
Pam

PamsPromise

I just found this and thought I would share. Vitamin D, calcium vs breast cancer.

http://www.webmd.com/breast-cancer/news/20070529/vitamin-d-calcium-vs-breast-cancer

linapril

This last posted link is also interesting. Since I am post menopause the Vit D may be or not be associated my bc, although I'm thinking it is. And I have lived in Florida for the past 30 years so you’d think I’d have gotten enough Vit D from the sun.

Regarding the previous article, I also don’t know if I agree with all of it and would never sway anyone away from having a mammogram although I had 3 tumors, none of which showed up on my mammogram (yes my breast was dense).

Pam, to answer your questions, my bc was found 8/06 and the Vit D deficiency around 4/07, April of this year. I never had pain as you describe and am so glad the Vitamin supplement is dramatically helping you. You certainly have a lot of things hitting you at once and I hope the best for you on this journey. Are you facing surgery to be done?

Hopefully being on these boards and reading the interesting dialog from the many intellegent women here will help you as they have me as I have gone through many emotions, questions, and decisions while adjusting to my new life as a survivor, like you. I’m happy to share anything that may help, just ask.

PamsPromise

I really don't know what is in store for me yet Linda. I am having a biopsy done on July 18. I have 2 solid nodules less than 2 cm total and a highly spiculated area. The nodules were found on ultrasound, not seen on mammo. The spiculated area was found on mammo and not ultrasound. I have dense breats as well and postmenopausal. My mother and grandmother both have had breast cancer with my mother being a 15 year survivor at 83.

Thank you for not minding the questions as I have many these days. Is your treatment going well and did you have to have surgery/chemo/rad? What kind of BC was diagnosed? My mother and grandmother had tubulolubar which I hear is rare. The two solid nodules I have are oval shaped.

I definately believe that vitamin D is a factor. However, my calcium is normal. Was yours normal as well? I printed out the article you posted and have given it to a couple of my friends. They are amazed as was I.

The boards have been very helpful to me and the women are so well informed. It is one of the things that is getting me through this very stressful time. I certainly appreciate your reply. Having a very similar vitamin D deficiency it has been very informative. Take care, Pam

Anonymous

Julie, my PCP said all bloodwork was within normal range. He's not planning to lower my Synthroid. I do have a history of tachycardia and "skipping" heart beat both of which were with me before bc. My PCP put me on Toprol XL 50mg, but it has been increased to 100 mg. Also, I believe my TSH was too low last time. I'd have to find my bloodwork. I'm thinking about seeing an endo just to see what he/she thinks about my dosage.

I realize my onc doesn't do "other" bloodwork e.g. cholesterol, thyroid because she told me as much. I told her my pcp would do that. In face I didn't ask her to do the vitamin D bloodwork either.

Thanks for your help and suggestions.
Shirley

Anonymous

Quote:

---

So Shirley, my point--if you feel good on the higher TSH, no big worry.(The endocrinologist I saw said this too.)

---

What does "feel good" mean. LOL I'm tired all of the time, but the endo that founnd I needed thyroid meds said it would not help my energy level. He sort of explained why, but I don't know what he said. That was years ago.

I hate the "edgy" feeling. I've had anxiety issues for years and it's certainly not a feeling I enjoy, or that makes me productive.

We just got back from a weekend with our grandkiddies and I'm exhausted! But had fun anyway. Now the peace and quiet.
Shirley

Anonymous

The article by Mike Adams was interesting although I can't agree with everything he says.

I do not get out in the sun. So, I have decided to increase my vit D since the score is on the low side of normal. I've been taking 1200 mg the last several months to a year.

I can only imagine what my Vitamin D level was when diagnoses...probably like Linda's and NextSurvivor's. However, I was postmenopausal. And I don't think they have done enough research on us "older" ladies to know whether or not the D does help. I'm going to ASSUME it does.

I will also send some of this research to my daughters so they can present it to their doctors.
Shirley

linapril

Shirley,
Even though you are tired now, were you somewhat energized being around your grandkids? When I was put on synthroid I did feel a difference in my energy level – not a great improvement but some. Since you’re going to see an endo, I wish you well, maybe they’ll give you some information you PCP has not.
Pam,
Your situation proves it’s good to have both the ultrasound and mammogram.
First I had a lumpectomy but then it was discovered a total of 3 multifocal tumors so 2 months later I was back in for a mastectomy. No one in my family has had breast cancer and mine was also on the rare side, it’s called “colloid” or “mucinous” . My calcium has always been normal. I’ve also sent you an email .

Anonymous

Linda, I'm a very hard person to figure out.

Years ago I was dxd with fibromyalsia. I started taking amitriptyline for sleep. I don't think I had or have fibro. However, I sometimes think I have chronic fatigue.
I was "foggy" before chemo, but I seem more foggy now. I have a more difficult time focusing. I believe the fatigue is more unrelenting now.

It is VERY depressing because I want to be able to enjoy my grandkids MORE. I do enjoy them, but the fatigue is an issue and has been for years. Sometimes (and don't tell anyone) I am really envious of my friends who have grandchildren that seem to be able to go, go, go.

Perhaps my need to UP my Effexor. But I sure hate to do that. I'm only on 37.5 mg and I know that can't be enough to help depression.
Shirley

PamsPromise

Hi Shirley: I was diagnosed with fibromyalgia before the vitamin D deficiency was discovered. I don't think I have it either especially since taking the vitamin D has helped my pain and fatigue significantly. You talking about being in a "fog" seemed very similar to what I felt before my vitamin D deficieincy was found. If you haven't had yours checked maybe you should think about it. I have taken 50,000 IU of vitamin D weekly for 2 months now and I can feel my constant fatigue and fog like feeling improving. I truly think that vitamin D should be checked every year when a women has her physicals. You also seem to be taking a really low dose of Effexor also. Most of the people I have know who take the medication are on twice that amount. Take care and I hope you feel better soon.

--Pam

Anonymous

Thanks, Pam.

I did have my D level checked about a week ago. It was 34.8 with the limits of 32 - 100. So, I'm increasing my D because I'm on the low side of normal. No telling how low it was before I started taking 1200 mg of D a few months ago. I rarely go out in the sun. CAN'T STAND IT!

My fibro dx was back in the 80s when the syndrome was just beginning to be recognized. I think it was a "catch all" for most anything to which a good explanation was not available.

I'm just CRAZY! LOL
Shirley

BlindedByScience

Shirley, I believe fibromyalgia can be diagnosed by the number of painful 'trigger points' a person has. (A trained massage therapist should be able to identify them for you quite easily.) A trigger point is a spot where muscles insert--sometimes they're called 'tender points'. Otherwise, I don't think there's any lab test to diagnose fibromyalgia, but it almost always seems to co-occur with a history of poor sleep quality.


http://www.fibromyalgia-symptoms.org/fibromyalgia_diagnosis.html
Fibromyalgia Tender Points

Upon physical examination, the fibromyalgia patient will be sensitive to pressure in certain areas of the body called tender points. To meet the diagnostic criteria, patients must have:

1. Widespread pain in all four quadrants of their body for a minimum of three months. Pain is considered widespread when all of the following are present:

* Pain in the left side of the body
* Pain in the right side of the body
* Pain above the waist
* Pain below the waist
* Pain in the neck, front of your chest, mid-back, or low back

2. At least 11 of the 18 specified tender points of fibromyalgia (see diagram below). These are areas of pain on touch but without signs of redness, swelling or heat in the surrounding joints or muscles. For a tender point to be considered "positive" you must feel pain when someone pushes with their finger with an approximate force of 4kg (roughly the amount of pressure needed to change the colour of the skin). Some health care providers may use an instrument called an algometer during the examination of the patient to ensure that only a 4kg load is being placed. The location of the 18 tender points are:


**You have to go to the web page to see the pictures: http://www.fibromyalgia-symptoms.org/fibromyalgia_diagnosis.html**
(1 & 2) Occiput: on both sides (bilateral), at the sub-occipital muscle insertions.
(3 & 4) Low Cervical: bilateral, at the anterior aspects of the inter-transverse spaces.
(5 & 6) Lateral Epicondyle: bilateral, 2 cm distal to the epicondyles
(7 & 8) Knee: bilateral, at the medial fat pad proximal to the joint line.
(9 & 10) Second Rib: bilateral, at the second costochondral junction, just lateral to the junctions on upper surfaces.
(11 & 12) Trapezius: bilateral, at the midpoint of the upper border of the muscle.
(13 & 14) Supraspinatus: bilateral, at origins, above the spine of the scapula (shoulder blade) near the medial border
(15 & 16) Gluteal: bilateral, in upper outer quadrants of buttocks in anterior fold of muscle.
(17 & 18) Greater Trochanter: bilateral, posterior to the trochanteric prominence.

Why Eleven Points?
Some experts believe that a person does not need to have the required 11 tender points to be diagnosed and treated for fibromyalgia. This criterion was originally intended for research purposes. A diagnosis of fibromyalgia may still be made if a person has less than the 11 of the required tender points so long as they have widespread pain and many of the common symptoms and associated syndromes connected to fibromyalgia, such as sleep disorders and irritable bowel syndrome.

If a patient has some symptoms but does not meet the tender point criterion, a diagnosis of "possible fibromyalgia syndrome" may be assigned. You should also remember that self-diagnosis is not advised and that you should consult a skilled medical professional to conduct a thorough examination.

What Goes with Fibromyalgia?
Commonly associated symptoms of fibromyalgia include:

* Fatigue
* Irritable bowel syndrome
* Sleep disorders
* Chronic headaches
* Jaw pain
* Cognitive or memory impairment
* Muscle pain or morning stiffness
* Painful menstruation
* Numbness and tingling in the extremities
* Dizziness or light headedness
* Skin and chemical sensitivities

Anonymous

Thanks, BBS. I haven't checked out fibro in a long time.

I did not have the tender points. However, my discomfort is numbers 9 & 10 and 13 and 14. Numbers 9 & 10 present a pressure pain which is sort of like a "pressure" headache.
I have that daily and sometimes worse than other days. I have about six "What Goes with Fibromyalsia?".

The last time I saw the Rheumy was several years ago. I had to laugh at him. When he examined me for the pressure points he said, "You failed that test." I thought, DUH!

What I experience isn't painful to the touch. I have a friend who was dxd with fibro and the tenderpoints were VERY tender.

I diagnosed myself as CRAZY!
Shirley

PamsPromise

I had all the tender points in May when my rheumatologist diagnosed me with fibro. However, after 2 months of 50,000 units of vitamin D weekly they have all but disappeared. I'm sold on vitamin D as you can guess.
Take care, Pam

Anonymous

Good for you, Pam!

You know, it's hard to tell other people to give this a TRY. They look at you like you're nuts and all we want to do is share the info that others have experienced.
Shirley

BlindedByScience

The vitamin D link is interesting....a lack of vitamin D can sometimes be diagnosed by pushing on the middle of the sternum (breastbone) with 1 finger--if it's painful, you may be deficient.

Shirley, your steadfast avoidance of the sun could be the problem with the bone pain as Pam mentioned.

sschmidt

Do you suggest one be under their doctor's supervision if taking high doses of vit D? I take about 1400 a day. Would take a lot more if it were safe. It may be a coincidence but my leg pain is so much better. I used to have a really hard time sleeping due to hip pain...my rheumitologist told me it was my ligaments. I can sleep on my sides again. I ahve been doing hip flexers so that could be part of it. The two things I have done differently are hip flexers and Vit D.

thanks for you answers in advance! Shirley

BlindedByScience

I think all of us should be tested for our blood level of 25(OH)D at least once a year. If you have the test done, you'll be in a much better position to decide how much D to take and whether the amount you're taking is adequate to keep you at a good level.

1000 - 2000 iu per day is OK for most people, but get the test. Then you & your doctor will be able to make the right choices.

Since Vitamin D is important in managing inflammation, your PCP or rheumatologist may be willing to order the test.

Anonymous

BBS and Pam. I am so excited to report to you that the friend of mine who has fibro went to her Rheumy today and actually SAW him. He did a Vit D test (she didn't ask for it). He also told her to take folic acid and selenium. They were doing somekind of study with Lyrica. He suggested she try that also.

I've been trying to tell her about D, mag and more calcium.
Always get the excuse....too many pills.

BBS, I NEVER like being in the sun. Even years ago when I actually got a tan from sunburns (lol..I'm fair complected) two years in a row I hated every minute of sitting on the lovely, sandy, hot beach and then having to go home and wash three little girls hair and blow it dry plus my own. My DH loved the tan. He wouldn't sit in the sun and get crisp. LOL I'm not a fan of sunbathing or getting hot.

Sooooo, the easy way out is to up the D. I'm just excited to see some doctors interested in this EVEN IF it's not mine.
Shirley