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Do you know your lab results

nasher
Posts: 507
Joined: Apr 2010

Ok thought I would bring this topic up.

I was wondering how many of you have learned to read and understand your lab results

myself I have had to go through alot of serches to ensure I understand every line of my lab results and have started to keep a listing of every one cause in my world NORMAL dosen't cut it.

there have been many times in the past year that I was told my lab results were normal but looking back through them and pointing things out to my doc about them has managed to get the doctor to wonder about some of my other things not tested and get them tested.

one thing I noticed was my Vitimin D level over the year was droping like a stone it was 6 months since they last tested it in the "NORMAL RANGE" it was 26 (25 or less is low) when they tested me they found out it was now at 12 so I am on Vitimin D suppliments (50,000IU/week) and Calcium suppliments and about 10 diffrent lab results later they found I also had some other Issues that specialized labs are being done on. None of this would have been caught if I wasn't looking at my lab results and ignoring the "its normal" and watching whats happening with my body and figureing out how to read lab results.

So, has anyone else been looking over there lab results and reserching everything to make sure you dont slip through the cracks cause the doc told you it was normal.

LBlackman
Posts: 113
Joined: Mar 2011

I have not done that, simply because I don't know what is "normal". My labs were "normal" for thirteen years as the goiter got bigger and bigger until it was discovered. I saw a Dr. several times and she commented on my lymph nodes being swollen but never did anything, just commented. I am realizing now as I have so many "bad" days healthwise that I need to get copies and interpret them myself....I am also going to put myself on the LID diet even though my Dr. said I do not have to do it. Thanks for making me aware that Drs. are "practicing" physicians and we have to be our own advocates.....
Lynne

sunnyaz
Posts: 582
Joined: Oct 2010

Great advice Nasher. Thanks for sharing.
Julie-SunnyAZ

LBlackman
Posts: 113
Joined: Mar 2011

I am going to ask my nurse to give me the past few results for my thyroglobulin and TSH levels. I will also ask if they check my vitamin D. I would like to share these with ya'll so you can help me understand them if that is okay. Nasher and Sunny, you both have been excellent with the responses and have brought some things to my attention that I haven't thought about before. Everyone on here is really forthcoming and caring. Thanks for everything as I am new to this site and hope I am not driving everyone crazy....lol I am like the girl who goes to dinner and wants to know all the details about my meals, but then goes to the Dr. office and says "no, I have no questions"......:)

nasher
Posts: 507
Joined: Apr 2010

you are not driving us crazy. (I have been there a long time)

one of the points of this board is to ask every question you can think of and copy down the questions to ask your doctor.

I have shown up with a list of questions before.

you can search online and find lots of copies of normal ranges for lab results.

Also remember just cause it’s in the normal range doesn’t mean its normal for you.

Remember your primary care provider probably sees a patient every 30 min for 8 hours a day 5 days a week. that’s about 80 patients a week. So if your results are in the normal range it can easily slip past them that it has been going up or down or whatever.

Also remember the Specialists are specialists for that part of the body or type of disease but may not know the individual issues you are having.

Remember some facts
For all cancers
It is estimated that 1,529,560 men and women (789,620 men and 739,940 women) will be diagnosed with and 569,490 men and women will die of cancer of all sites in 2010. Close
Table I-1 (http://seer.cancer.gov/csr/ 1975_2007/results_single/ sect_01_table.01.pdf).

For thyroid cancer
It is estimated that 44,670 men and women (10,740 men and 33,930 women) will be diagnosed with and 1,690 men and women will die of cancer of the thyroid in 20101X Close
Table I-1 (http://seer.cancer.gov/csr/ 1975_2007/results_single/ sect_01_table.01.pdf).

So about 2.9% of all cancers were thyroid cancer.
13.5% breast cancer
14.23% prostate cancer
14.5% lung cancer
54.87% other cancers
There are over 30 MAJOR types of cancer so your oncologist isn’t a specialist on thyroid cancer

parts of the endocrine system
hypothalamus, pineal body, pituitary gland, thyroid gland, parathyroid gland, heart, striated muscle, skin, adipose tissues, stomach, duodenum, liver, pancreas, kidney, adrenal glands,
ovary, placenta (when pregnant), and uterus

so 19 major parts of the endocrine system.. so your endocrinologist isn’t a specialist on thyroid cancer.

all you have to watch for is your own body and your family members so you can become a specialist for your and your family’s health.

My suggestion is try to make questions about every discussion that you see here on the board and ask your doctor about everything you can make a question about

good luck and keep asking questions
Craig

LBlackman
Posts: 113
Joined: Mar 2011

My TSH last November was 0.048. The nurse said that the Atkins diet that I was on previous to the other scans may have masked some cancer cells. So it will be regular food, then low iodine diet for two weeks prior to the scan for me.....

nasher
Posts: 507
Joined: Apr 2010

well on synthroid for me, my TSH is 3.12
prior to my last scan they had me up at 95.69

so if your TSH was way down at 0.048 I would definatly say the chance for uptake was probably much lower than it should have been. I am actualy supprised that they did it with such a low TSH.

well keep us informed and ask questions

LBlackman
Posts: 113
Joined: Mar 2011

They said they wanted to keep it low to minimize the chance of a recurrance. That reading was from the last bloodwork I had done in November. My scan is for this April, but I don't imagine the reading has changed that much since then. No wonder I am having the panic attacks like I am having. Thank you so much Craig........

sfl67
Posts: 55
Joined: Nov 2009

Hi Lynne,

My Endo. wants my TSH low also for the same reason as yours. My last reading was .02. Hurthle Cell is different to other thyroid cancers in that it responds to radioioactive iodine less than ten percent of the time, at least that is what my doctors have told me. I had a large initial dose in Sept. 2009, but I have always had detectable levels of thyroglobulin in my blood, that was the reason for the Thyrogen injections and the WBS in Sept. 2010. After these tests my doc said my thyroglobulin levels were in the danger zone so he ordered the PET/CT scan in Nov. 2010. These tests did not show a tumor, but he thinks it is there just too small to show up. My understanding is that the Thyrogen injections stimulate the levels, giving a more accurate reading of what your "normal" TSH would be without the suppression of the Synthroid. I am not medically trained, but this is my understanding.

I went strictly on the LID for two weeks before and the week of testing. My last Synthroid was on Saturday morning before my first Thyrogen injection Monday morning. I resumed regular diet after my WBS on Thursday. There is a printable cookbook on thyca.org in case you haven't read that; thyca has a great deal of good information as well.

Best wishes for your upcoming tests.

LBlackman
Posts: 113
Joined: Mar 2011

Thank you so much, I have already printed out the diet off of there and have some great ideas! I feel so much better with all of the feedback and have almost a whole page of questions written down. I will keep you all informed of anything I find out. Thanks for the positive wishes and I wish you the best as well.
Lynne

sunnyaz
Posts: 582
Joined: Oct 2010

They should be keeping it high to minimize the chance of recurrence. Unless I am getting wrong information. I guess I better check on that.
Julie-SunnyAZ

sfl67
Posts: 55
Joined: Nov 2009

Hi Julie,

According to a book titled Essentials of Thyroid Cancer Management: Patients with thyroid carcinoma are usually treated with L-T4 to lower TSH secretion below normal. It is common practice to use L-T4 in the management of patients with differentiated thyroid carcinoma, usually in doses sufficient to lower the serum TSH to less than 0.1 mIU/L.

The most appropriate dose of L-T4 for most patients with thyroid carcinoma reduces the serum TSH concentration to just below the lower limit of the normal range. Some prefer greater suppression, for example serum TSH concentrations between 0.05 to 0.1 uU/mL in low risk patients and less than 0.01 uU/mL in high risk patients. (Dulgeroff 1994) and a few advocate the latter target for all patients. However, there is no published evidence that maintaining serum TSH concentrations less than 0.01 uU/mL has benefits, and it does have some risks.

These are the guidelines for Hurthle Cell, they might not apply to the type of cancer you had. Hurthle is defined as rare and aggressive and does not usually respond to commonly used testing methods, such as PET/CT scans. I am unfortunately in the ninety percent for whom the standard treatment and testing methods do not apply.

I hope this info helps.

Wishing you well,
Shelia

sunnyaz
Posts: 582
Joined: Oct 2010

So glad to hear you are discontinuing the Atkins diet.
Julie-SunnyAZ

LBlackman
Posts: 113
Joined: Mar 2011

Thanks for the info Shelia, Hurthle cell is so different, the way you explained it, it makes sense. I am however worried that my high protien / high iodine diet that I did before previous scans may have masked anything anyway, but this time it will be accurate. Is the level I am at considered hyper or hypo? That part confuses me and when I asked the nurse she couldn't give me an answer.
Julie - after I gained so much weight two family members were saying how fat I was getting and why wasn't I doing anything about it. I was walking 15 miles a week and being careful about what I was eating and drinking and not losing, needless to say this made me very upset and depressed. Not to mention I felt very bad about my appearance after being a small person all my life, but I would rather be a little heavier than lose my life so I finally have my priorities in order.....Thanks for all your words of wisdom and support, everyone on here has been so wonderful with advice and open with their own experiences.
Lynne

nasher
Posts: 507
Joined: Apr 2010

hyper probably

hyper basicaly is when your body has too much t3/t4 combo level
hypo is when you do not have enough and your body is trying to produce more

sfl67
Posts: 55
Joined: Nov 2009

Hi Lynne,

I am termed hyperthyroid with levels at .02. I am eating less and gaining weight each month. I have no energy and exercise has become difficult. My doctor doesn't seem to have an answer for me, just part of the disease and treatment.

Good luck with the LID. Hope you have excellent results.

Please keep us updated.

Shelia

sfl67
Posts: 55
Joined: Nov 2009

Hi Lynne,

I am termed hyperthyroid with levels at .02. I am eating less and gaining weight each month. I have no energy and exercise has become difficult. My doctor doesn't seem to have an answer for me, just part of the disease and treatment.

Good luck with the LID. Hope you have excellent results.

Please keep us updated.

Shelia

LBlackman
Posts: 113
Joined: Mar 2011

Sounds like we are in the same boat. The only thing that worked for me was the Atkins, but after the research I have done, I will not start it until after my next scan and I am positive my Dr. will have a comment about my weight and I will go right back at her with the fact that I am watching what I eat and am exercising. Thanks so much for your feedback, I really felt so alone and now to know someone else knows what I am going through means so much.... I will keep you posted, my scan isn't until the end of April, but I am so ready to get it over with.
Lynne

sunnyaz
Posts: 582
Joined: Oct 2010

I feel your pain. I feel so out of control! I hate to admit it but I have always been vain. I took a great deal of pride in the way I used to look. I used to look at least ten years younger than my real age. But now, I exercise and have great difficulty loosing weight. I finally lost about fourteen pounds of the fifty I gained but I still feel like a blob. Before my diagnosis I knew something was wrong mostly because I kept gaining weight even though I was very athletic and ate a balanced and healthy diet. I could run for miles, was a kick boxer and did aerobic dance just for fun. As a young child and young adult I was a gymnast. Gymnastics gave me such a thrill. After I got older I couldn't do gymnastics anymore so I took up aerobics, kick boxing and swimming because I needed the endorphin rushes. I just can't get back there and I feel so hopeless. Whenever I exercise I just feel tired. Will I ever feel even close to the way I used to? Is there a way? Does anyone else feel as hopeless about their body as I do?
Julie-SunnyAZ

LBlackman
Posts: 113
Joined: Mar 2011

Julie, I really can understand. I now look at people who weigh more than "society" thinks they should and wonder why they don't lose it. I too was very active and tried to stay that way, but to no avail. No matter how much I walked or swam or what I ate, I still can't seem to lose it. The Atkins is the only thing that worked and after the first two weeks of it I actually felt better and had more energy. Both my family Dr. and my endocrinologist told me it was fine for me to do it as long as I got off of it every now and then. After finding out that it may have been an issue with my scans, I will start it again, just after my scan. I also want my Dr. to see how I am after being off the diet for a few months, my weight will be up twenty lbs since I saw her in November. The diet is not a life long plan so I hope we can find one that will work and feel better about ourselves. I love swimming, but I hate being in a crowd looking like I do and knowing what people are thinking. That may be vain, but it's just different for me. If I gained weight before I could exercise, change eating habits and be fine, now it's harder. I don't judge others, I know the outer appearance is just that a facade, but I want to feel good for me. If there is a will, there is a way and together we will find one.
Lynne

nasher
Posts: 507
Joined: Apr 2010

Trust me I know the feeling as well

If I was not Active Duty I would be a candidate for weight loss surgery (bariatric) but I will have to wait till I retire from AD (December 2011) before I can start the process for the surgery

I spent almost an hour chatting with my Endocrinologist yesterday going over my labs and the research I have done online and he agrees with me that shifting from just Synthroid to a combination of Synthroid and Cytomel may help me lose weight, increase my energy levels, and remove depression.

I used to be on 250 Mgs/day of Synthroid
my new doses are
200Mgs/day Synthroid and
25 Mgs/day Cytomel

I will keep you all informed if it seems to work or not for me (may be 10-14 days before I know if it will perk me up and such or not)

Craig

LBlackman
Posts: 113
Joined: Mar 2011

Thanks Craig! That is awesome, I will ask my Dr. about the Cytomel as I really think it would be beneficial to me as well. Please keep us informed, I love hearing updates!
Lynne

sunnyaz
Posts: 582
Joined: Oct 2010

Would love to hear how the combination drugs work also. I am willing to try anything at this point. It's so frustrating. I run for an hour a day, barely eat anything and still can't loose much of the weight. I haven't stepped on the scale this morning and I did a really good cardio work out last night. I am waiting until I can get some coffee in me before I weigh. Have to wait at least an hour after Synthroid (because I use a little bit of fat free creamer), then I can go to the bathroom and weigh myself. Stupid huh? Well every ounce counts :)
Julie-SunnyAZ

nasher
Posts: 507
Joined: Apr 2010

well suposidaly I wont "see the effect" untill 11-14 days but since saturday I have had more energy and i feel less sad... People around me on sunday told me that I look happy for the first time in months.

no clue how/if this is going to effect weight loss or whatever but all in all I think i feel more here now... will keep you all up to date as i can

Craig

ckarl22
Posts: 4
Joined: Mar 2011

So if you have a high TSH level your uptake is better?

Also what is the highest TSH level you have had, I was tested at something like 200 or 284 or somthing once before i did my RAI treatment

nasher
Posts: 507
Joined: Apr 2010

mine was 95.69 last time i was tested prior to uptake

basicaly as long as its higher than 50 (from what the doc told me) that you should have a good uptake but higher is better or so i was told as well

LBlackman
Posts: 113
Joined: Mar 2011

So glad to hear a positive affect from the meds Craig! Keep it coming!
Lynne

nasher
Posts: 507
Joined: Apr 2010

People at work andmy friends are saying they have noticed that I am more alert and have more energy as well as looking less depressed.

I have also noticed that i seem to be doing more and haveing more energy.

Its to early to figure if its going to help with weight loss but I feel better with myself.

ashes79
Posts: 5
Joined: May 2011

Hi Nasher,

Are you still on the synthroid/cytomel combo? I would like to know how it's working out for you. I am thinking of asking my Dr to try it. That's why I'm on the boards and I am so glad I found your post.

Wishing you the best!
Ashley

nasher
Posts: 507
Joined: Apr 2010

Yes I am still on the Synthroid/Cytomel combo..

It is not perfect and they still need to adjust things (probably will for years) but it defiantly is much better than synthroid alone.

My Cytomel is split to 2x a day (12.5 mgs) in the Moring and Evening (25mgs a day total)
My Synthroid is taken in the morning 1 hour + prior to anything else.

The best part of this is it only takes about 2-3 days before you will notice the difference.

Craig

ashes79
Posts: 5
Joined: May 2011

Thank you for replying. Synthroid dosages have been a major pain. My Dr has me going back and forth from 2oo mg to 175mg. She hasn't said anything about possibly adding cytomel but I did take it after both RAI treatments with the Synthroid for three weeks. I found that I really need to be proactive with my treatment. With my initial RAI treatment they were getting ready to send me home with instructions for the low iodine diet and I had to ask about it. I was also told not to worry about taking my med with calcium. I am in nursing school now and the drug book clearly states to avoid taking the suntroid with not only calcium but also antacids and iron. I hope I am at least allowed to try the combo treatment.

Ashley

nasher
Posts: 507
Joined: Apr 2010

I normaly take my calcium and other suppliments 5+ hours after synthroid... and i wait 1-2 hours after synthroid before i have anything to eat this seems to give me the most for my dosage.

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

Ashley,

Does your Doc have you on 175 one prescription and then 200 the next prescription? I know a lady who is ten years post total thyroidectomy, I believe she takes 175 every day with a 25 every other or every third day. If you seem to be in between doses, maybe something like this would work well.

Alan

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