I'm Always Cold

[horsegirl]

I finally located my most recent lab tests, & here are some of the results...

See if anyone notices anything I'm missing that might contribute to being cold all the time.

(sorry for all the details, but I didn't want to leave anything out).

July 2007

Red Cell Count: 3.86 (range: 3.7-5.5)

Hemoglobin: 12.1 (range: 12.0-16.0)

Hematocrit: 35.0 (range: 34-46%)

Ferritin: 53 (range: 10-291)

TSH: 1.92 (range: 0.35-5.5) - This goes down slightly at the next test in October

Alkalkine phosphatase: 31 (range: 35-115) - Doc says "fine"

Trigylcerides: 27 (range: 35-160) - Doc says "fine"

September 2007

Vitamin D, 25 hydroxy: 18 (range: 20-57) - I'm now on a Vitamin D supplement

Vitamin B12: 353 (range: 211-911)

ANA: negative, but "suspected centriole antibody"

Low bioavailable testosterone

October 2007

TSH: 1.03 (range: 0.35-5.5)

Free T4: 1.00 (range: 0.80-1.80)

[Nyxie63]

Horsegirl,

Your B12 is pretty low. Try some sublingual B12 lozenges. Just hold them under your tongue or between cheek and gum until they dissolve. Most folks I know take between 3000-5000mcg daily to boost their levels. I think you'll feel a difference once you start taking B12. If the sublinguals don't work in bringing your level up, then shots would be a good alternative.

The low triglycerides could be caused by a couple of things. The most obvious that come to mind is malabsorbtion/malnutrition. Since you haven't been on this new way of eating for long, its possible that your intestines haven't healed yet.

The low ALP level can also be caused by malabsorbtion/malnutrition i.e. Celiac.

Your FreeT4 is low. And I agree with Loraleena - talk with your doc about testing both your TPO and Tg antibodies. These will check for an AI thyroid disease.

Since your Free Testosterone is low, you might also check with your doc about getting your DHEA tested. If that's low, its most likely the culprit in this case. Would also insist on getting your adrenals checked. Low DHEA is often found in adrenal fatigue.

When was the last time you had a full CBC run? I'd be interested in seeing your platelet count and MCV. Ever had your folate tested? That'd be a good one to run as well.

I also see that you were dx'd with FM and arthritis. Ever been tested for Lyme?

Hope this helps.

[loraleena]

Your B-12 is low, and the TSH range your doc is using is way out of date. The normal is .3-3. I urge you to get your thyroid peroxidase antibodies checked. See my above post.

[loraleena]

Your B-12 is low, and the TSH range your doc is using is way out of date. The normal is .3-3. I urge you to get your thyroid peroxidase antibodies checked. See my above post.

[Electra]

I was going to say the same your B-12 is low, you need a second opinion on the B-12. I'm not real familiar with the thyroid issue, but I feel like I will be very soon. My Mom just tested positive for Celiac and she's had thyroid issues for years, so I'm just praying I don't have thyroid issues too.

[Leslie-FL]

Like someone else who posted earlier, I used to always be warmer than everyone else. Then, in the last few years, I've noticed I get cold way more easily than I used to, and often more easily than others around me. I do have hot flashes, so I'm not always cold, but once I get too cold, it's a feeling deep inside and it's so hard to warm up.

I have fibromyalgia and have been thinking it is related to that, since it began long before I went gluten-free.

[Katydid]

As to the question of having a 'normal range' thyroid test and still having thyroid type symptoms, I would like to add the following:

I always had very low basil temp in the morning. You need to take it under your arm upon awakening, even before getting out of bed.

I was cold all the time and would get these horrible fatigue spells where I was so tired and cold that I actually hurt all over.

I had no hair under my arms or on my legs -nice not to have to shave; but I had no eyebrows either.

I had great difficulty controling my weight; and also a family history of thyroid problems.

For years, my doctors always told me my thyroid was just fine, even an endocronoligist. Then about a year ago, a new doctor tried me on a low dose of Armour, a thyroid med. What a world of difference it made. I am no longer cold all the time and don't have those horrible fatigue spells anymore. I can control my weight just fine now and was even able to loose the 10 pounds which I had been fighting forever.

Despite the numbers, sometimes doctors just have to listen to the patient and pay attention to their symptoms. I'm certainly glad I stumbled across one that did.

Hope this helps someone.

Kay

[horsegirl]

Horsegirl,

Your B12 is pretty low. Try some sublingual B12 lozenges. Just hold them under your tongue or between cheek and gum until they dissolve. Most folks I know take between 3000-5000mcg daily to boost their levels. I think you'll feel a difference once you start taking B12. If the sublinguals don't work in bringing your level up, then shots would be a good alternative.

The low triglycerides could be caused by a couple of things. The most obvious that come to mind is malabsorbtion/malnutrition. Since you haven't been on this new way of eating for long, its possible that your intestines haven't healed yet.

The low ALP level can also be caused by malabsorbtion/malnutrition i.e. Celiac.

Your FreeT4 is low. And I agree with Loraleena - talk with your doc about testing both your TPO and Tg antibodies. These will check for an AI thyroid disease.

Since your Free Testosterone is low, you might also check with your doc about getting your DHEA tested. If that's low, its most likely the culprit in this case. Would also insist on getting your adrenals checked. Low DHEA is often found in adrenal fatigue.

When was the last time you had a full CBC run? I'd be interested in seeing your platelet count and MCV. Ever had your folate tested? That'd be a good one to run as well.

I also see that you were dx'd with FM and arthritis. Ever been tested for Lyme?

Hope this helps.

How do I talk to my doc about things like the B12 level & Free T4 levels being low when they're within the lab's range values though? I understand the concepts like "optimum" values, but does the medical community?

My DHEA was tested, & it was within the "Normal" lab range, as was my cortisol level.

I talked to the doctor about possible adrenal fatigue & he tested for it but said it was normal.

The full CBC was run in July `07 & platelets were "low normal" too, as were some of the others (I'm

at work & don't have the lab results in front of me right now). I don't know if folate has been tested.

I've never been tested for Lyme disease; why would that be related to fibro & arthritis? I thought those

were related to the gluten intolerance? How is it tested? How do I talk to my doc about testing?

Thanks again for your help!

[confusedks]

I've never been tested for Lyme disease; why would that be related to fibro & arthritis? I thought those

were related to the gluten intolerance? How is it tested? How do I talk to my doc about testing?

I have Lyme Disease and the reason someone said that Lyme is connected to arthiritis, and fibro is because they are kinda just symptoms, and a lot of the times people get rid of them altogether when they are treated for Lyme. If you're interested in getting tested, I'd check out the Lyme Disease thread so you can ask over there. I can answer most of your questions, but it's probably best you read some of the info there.

[horsegirl]

When was the last time you had a full CBC run? I'd be interested in seeing your platelet count and MCV. Ever had your folate tested? That'd be a good one to run as well.

Hi Nyxie,

Here's the lab results you were talking about (from July `07):

Platelet count: 181 (range: 130-400)

MCV: 90.7 (range: 80-100)

MCHC: 34.5 (range: 32-36%)

Red blood count: 3.86 (range: 3.7-5.5)

Immunoglobulin E: 111.0 (range: <25)

And from October `07:

DHEA: 3.6 (range: 1.9-7.6)

Cortisol: 7.3 (range: a.m.: 4.3-22.4; p.m.: 3.1-16.7) -mine was tested in the morning

Adrenocorticotropic hormone (ACTH): 12 (range: 6-58)

Near as I can tell, folate levels have not been drawn.

I emailed my doctor today to ask about the additional tests for thyroid disease, after looking up more

info about Hashimoto's thyroiditis. I'll wait to see if he'll order them or not (he's really good about working with me on this stuff; he's the one who pushed the insurance company to pay for Enterolab!)

Horsegirl

[Nyxie63]

Hi! I'm having a bad brain day today, along with other stuff

... all I can see is that your DHEA, cortisol, and ACTH are low. Will get back to you in a bit (probably tomorrow) with more info.

[horsegirl]

I got a response back from my doctor about my request for further thyroid testing.

Here's what he said:

Your last thryoid tests (TSH and FT4) were right in the normal range 2 months ago. The levels are where we generally want them to be. In terms of checking for for anti - TPA we can do this however even if you had positive antibodies I would not recommend taking thyroid supplementation.

I very freqeuntly find positive levels of antibodies present in the blood but they are inactive.

I'll place an order for them and you can get them done at your convenience.

I'll go ahead & get the testing done to see what it says. How do I justify to a doctor that lab tests are

"low" when they fall right in the range of "normal" according to the lab ranges?

Same goes for the DHEA, cortisol, etc.

Thanks!

[sickchick]

I hope you find answers... keep positive!!

[Nyxie63]

Hi!

Sorry about taking so long to get back to you. When I have bad brain days, I can barely read, let alone compose answers to anything.

Anyhoo, talking with your doc. That's something that a lot of us have problems with. There are a couple of things you can try and see if they work.

One would be to search the web and find sources to print out and take to your doc to read in order to back up your position. Another would be to try to talk him into trying you on a trial dose of thyroid meds. A way to do this would be to say "yes, I'm in the normal range, but it might not be optimal for me".

Unfortunately, these approaches don't work as well as we'd like. Many of us end up looking for docs who will listen, often to no avail. Some even have to resort to self-treatment, which is a last-ditch effort when all else fails.

Now, if your antibody tests come back positive, there's another reason to go in armed with references. Ask your dr if he'd rather wait until your body is damaged by the antibodies or doesn't he believe in preventative medicine? Ideally, full TSH suppression is aimed for if you have antibodies. This will keep the little buggers from attacking your thyroid. We're talking TSH levels close to 0 (yes, zero).

You might want to check out www.realthyroidhelp.com. Its an excellent forum and they can point you to references to arm yourself with. They're also pretty good at interpreting labs. They tend to be more Armour/HC oriented which I don't necessarily think applies to everyone, but otherwise, they're a good resource.

I also think you need to push for a western blot test for Lyme. Igenex labs is really the best, but getting it done at all is a step in the right direction. Lyme can cause the FM, arthritis, and even thyroid problems. Something to think about.

Hope this helps.

[horsegirl]

I took the "quick lyme" test online & answered "yes" to 14 of the questions; but I'm confused, because while I did have several tick bites as a child (the last one was probably in the late 1970s/early 80s), I never had a rash or anything like that indicative of lyme. It seems that many of the symptoms on the lyme test could be caused by so many other things too. I just don't know that my doctor is going to agree with testing for lyme with the vague symptoms listed. Any other suggestions on how to approach this? Thanks again for your help!

[mac8005]

Hi I'm Mary and my son was dx'd ser. a month and a half ago. I also have had CFS Fibro for 12 years.

It is your thyroid/endocrine system out of wack. Just because the tests come back within range, doesn't mean you don't have hypothyroid. Do you have any other symptoms such as low temp upon wakening without getting out of bed, low energy ?

My son has slightly elevated T3 and TSH suggesting Thyroiditis but the "specialists" said its not high enough to treat. Hello ! He can't sleep, he is always lying around. WTH.

I have put him(and me) on Maca and herb from the Andes. It was suggested in this book, Living with AutoImmune disorders. Got it at Whole Foods. I would try something wholistic first, and then if that doesn't work find a naturopath as they will most likely give you a trial of Armour Thyroid to see if the symptoms resolve. Not sure if that med is gluten free, if not you would have to find a doc willing to prescribe synthroid.

If these symptoms came on with presentation of the Celiac then possibly they will go away. I have read his thyroid problem should clear up, so I will support him nutritionally and herbally until he is healthy again.

[horsegirl]

I went in to see my doctor today, to follow up on why I still feel so terrible all the time:

Freezing cold, no energy, exhausted whether I sleep or not, increased fibro symptoms, etc.

He listened to everything & didn't treat me like I'm nuts, which I was a little concerned about.

He has tested my thyroid antibodies (for Hashimoto's) & said they were normal (don't have the values

right now with me). However, he is retesting the TSH & Free T4 again, & stated that even though they're in the "normal" range of lab values, some people feel better when the Free T4 is slightly higher

(like lots of you have said!) so he's starting me on a pediatric dose of Levoxyl for 1 month, then will test again to see what my levels are, as well as to see if I feel any better.

He's also retesting my vitamin D since I was very low & have been taking supplements; he wants me to bump up the amount of supplements I'm taking to 2000 daily, then will retest in a month again.

He also ordered tests for Lyme disease at my request (Lyme AB, IGG/IGM Western Blot), though

he says he's "never seen a case of chronic lyme disease yet"; however, he also said lyme is known as

"the great masquerader" so he wants to rule it out.

Have I mentioned I REALLY like my doctor? He takes me so seriously & is so reassuring, even when I'm crying in his office because I'm so exhausted.

Thanks for all the support; I'll keep ya'll posted on the results.

Horsegirl

[Jodi Mills]

I am always freezing, Havent had any tests done since I was 6. since I am 23 there could be something there now that wasnt when i was younger. I am the person with the windows in the car up, with no A/C when it is 100 degrees outside. this winter i have been wearing 2 pairs of socks, at least 4 shirts, and a zip up sweatshirt, and a hoodie. and still am always cold. sleep in fleece pajama's, cant do the sock thing at night, but have 4 big thick comforters, quilts on the bed.

I am happy to see I am not the only one to be freezing. i just tell everyone its cuz im cold blooded(reg temp is 97.2).

I too get overheated fast though, its like i will be freezing one moment, and then all of a sudden my face is beat red, and i feel like i am just on fire. isnt there just an equal medium somewhere when i can be just perfect temp???

[disneyfan]

I would keep pursuing the thyroid testing with your doctor because even though my levels are within "normal" lab ranges, they may not be normal for me. For instance, if my TSH is around 3, I am exhausted, gaining weight, and feel horrible. I usually try to keep it between 1-2 otherwise my system is completely off. My doctor will ask "how do you feel" and I will say. I did have to almost argue to get one dr to let me try a different dose to bring my TSH down a little and it worked...he had to admit I was right!

Also, I have always been cold and I was anemic for years until going gluten free. Have you ever had your ferritin level checked? That might be something to ask for.

Good luck!

[Lizz7711]

For those of you posting about being cold and having normal thyroid, check into your adrenals. They majorly impact body temp and are commonly fatigued/burnt out with people having food sensitivities. A good website is www.stopthethyroidmadness.com Lots of thyroid but also adrenal info. Here is a site that shows you the difference between adrenal/thyroid symptoms.

Open Original Shared Link

Good luck!

Liz

I would keep pursuing the thyroid testing with your doctor because even though my levels are within "normal" lab ranges, they may not be normal for me. For instance, if my TSH is around 3, I am exhausted, gaining weight, and feel horrible. I usually try to keep it between 1-2 otherwise my system is completely off. My doctor will ask "how do you feel" and I will say. I did have to almost argue to get one dr to let me try a different dose to bring my TSH down a little and it worked...he had to admit I was right!

Also, I have always been cold and I was anemic for years until going gluten free. Have you ever had your ferritin level checked? That might be something to ask for.

Good luck!

[horsegirl]

My lab results from 1 week ago:

TSH (sensitive): 1.35 (range: 0.35-5.5)

Free T4: 0.99 (range: 0.80-1.80)

Anti-TPO AB: 0.4 (range: 0.0-3.9)

He just retested them again yesterday, & started on T4 replacement (low dose) today.

Ultrasound of the thyroid in a couple of weeks too.

Wish me luck!

[loco-ladi]

So when I first started having issues that i knew weren't right I got pretty heavy into herbs and such...

I found that a daily dose of horsechestnut seed extract helped with my feet and hands being very cold, at the time it was also montioned as being good for anyone with diabetis as it helps improve the blood flow in your extremities... here are a couple links I found today as I dont expect anyone to just believe it works for me....

Open Original Shared Link

Open Original Shared Link

[Lawrence]

I was always freezing cold growing up and the next day that I went on a gluten-free diet I became warm, kinda strange. There are so many different problems with Celiac (the symptoms). My wife has a thyroid problem and she is always cold but I doubt she has Celiac. I hope everybody gets warm.