Brrrrr, I'm SO COLD...Hormonal Inbalance?

Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Nov 4, 2005.

  1. CAAnnieB

    CAAnnieB New Member

    Hi Everyone,

    As I write; I am SO freezing COLD, it's gross! Our house thermostat says 71 degrees, but my body feels frozen to the bone! What's going on?!!!!

    I have been tested in the past for Thyroid hormones & all was normal. I am thinking about going to an endicrinologist, because now that the weather has turned cooler; I am getting SO cold it's uncomfortable to say the least! I live in California & I get this way when the temp. drops below 80! It's ridiculous.

    I remember being this way in the wintertime when I was a little girl. I used to sit in front of the heater registers to get warmed up! I grew up outside of Buffalo, NY...It WAS really cold! But we had the heat turned up & everyone else in my family felt fine but me. Now I sit on my heating pad turned up to high & pile on layers of clothes. Even then, I feel cold.

    Does anyone else suffer like this? I'm sure that I must have a hormone problem! What else could it be?

    My hands are like ice cubes! HELP!!!!

  2. Alyndra

    Alyndra New Member

    Hormones, medications, low blood pressure, low immune, etc.

    I think they all have the potential to put the body into deep freeze!!

    I'm completely cucooned in at least 10 blankets, and like most nights come this time of year - I have a pair of mittens my gramma made me for while I use the computer. She even put little grip bumps on them for precision typing ;)

    My suffering though isn't medical. I live in good old freakin' cold Niagara Falls. Think back to your days of Buffalo.. The painful memories of snow should make just about any CA temp feel toasty warm!

  3. cindy41

    cindy41 New Member

    of being cold. I seem to always feel like I am freezing. I dread the thought of winter coming. On the weekend I take so many hot baths just to try and warm up. This is something new for me, probably for about the few months. Before that I was having hot flashes.
  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    People have no idea how painful that is. You may have Raynaud's Syndrome, but there isn't much they do for it but tell you to layer up. that's if anyone dx's it, most doctors just chalk it up to more complaining from us.

  5. CAAnnieB

    CAAnnieB New Member

    I figured that I wasn't the only one sufferring with this!

    Amanda~ You made me laugh this morning!...Yes, you would think thoughts of blizzards & piles of snow would warm me up, but even that just makes me feel colder! Maybe my meds are involved, but I've been like this my whole life...Just worse since FM hit full force. I DO tend to have low BP... Ahhh...Niagara Falls! Do you live in the U.S. or Canada? I've been to both places many times! My hubby & I were just watching a TV series called "WonderFalls" which takes place in N.Falls! It was only shown 4 times before being cancelled, but the entire season is out on DVD. We think it was very clever!(and funny!) Ever heard of it?

    Cindy~ Maybe the fact that your freezing cold state follows having hot flashes means this has something to do with our hormones? I'm in Perimenapause...It has gotten way worse over the past few years.(the Perimenmapause symptoms AND being so cold!)

    Jeanne~ Raynaud's runs in my family...My sister, Mom, Aunt & husband (!) all have it. But I do not have the discoloration & tingly pain in my fingers. My hands are just frozen!(Along with the rest of my bod.)

    Well, thank you for your replies. I truly appreciate you! This is more than just uncomfortable...It is becoming a real problem for me. It certainly doesn't help my already spasmed & painful muscles either.

    Happy Weekend to all!

    Blessings & Hugs,

  6. Wasabi

    Wasabi New Member

    Annie and others,

    I know what it's like to be freezing! Last summer, it would be 100 degrees outside, and I would still feel cold. It's like my body would be overheating, but I still felt cold.

    Anyway, what I think has helped me are Oxytocin injections. Oxytocin is a hormone, and it is typically used to induce labor. However, with FM/CFS, it is used to take the edge off the pain, and another nice thing is that it also helps regulate body temperature.

    After the first shot, I had a slight flushed feeling through my neck and face, barely perceptible. It really took the edge off my pain, and ever since I started taking these injections, I've felt less cold. I'm still really sensitive to cold, but I'm no longer always freezing.

    My FM specialist, Dr. Michael Powell, prescribed these injections for me. I think Dr. Teitelbaum also discusses Oxytocin injections in his book, From Fatigued to Fantastic. Anyway, I know it has made a positive difference for me, so I thought I'd mention it.
  7. CAAnnieB

    CAAnnieB New Member

    Thanks for your input. I am actually going to investigate going to see your Dr soon! I read your posts & went to his web site. I liked the approach & info I saw. I have had Teitelbaum's book for awhile...If Dr. Powell is diagnosing & treating similar to Dr. T & the FFC's; I think it would be worth going to him. I need to call my insurance to see if he's one of their providers...Sure wish I had unlimited amounts of money to go to whoever I wanted! I'm already spending oodles on supplements!

    Oxytocin, huh? I'll have to do some research on that. Glad to hear it has helped you with your pain AND body temp!

    Thanks for your reply. Keep us posted on your progress.

  8. cosmoo

    cosmoo New Member

    have you tried weaing any of the therrmal wraps? I especially like the trerma care wrap that goes around your lower back. It's comfy I've eaven worn one to bed, it really helps keep your bones warm. My other trick is to use "ski" pocket warmers, they are same idea as the theramal wraps and can be put in you pocket or tucked into sleeve ect.. I get very creative with them. Costco sells them cheap of a big box which I go through every winter. I live in WA and today we are having an inch of hard rain and it's barely 40 outside-brrr. Been sitting on the heating pad most of today!
    Sending warm thoughts your way
  9. GwenGlo

    GwenGlo New Member

    I am freezing also. My room is 70.7° and I just took my temp and it is 96.6°. I have heavy socks on, two shirts and winter pants. I will need to add more clothes or turn the thermostat up. I do live in Canada but right now it is 52° outside which is a veritable heat wave for November!
  10. LittleBluestem

    LittleBluestem New Member

    You will feel more cold at a given tempurature, the dryer the air is. Most furnaces dry the air. Adding some humidity to the air in your house may make you feel more comfortable and will be better for your furniture, as well.

    You lose a lot of your body heat through your head. I wear a bandana 'kerchief on my head indoors in the winter.

    I also have an electric matress pad for my bed. The greatest thing since sliced bread!

    And how could I forget my Bed Buddy. It helps keep me warm whether I have sore muscles or not. I don't know what the microwave is adding to the electric bill keeping it warmed, but it has to be less than it would cost to run the furness and keep the whole apartment warmer.[This Message was Edited on 11/06/2005]
  11. blondie45

    blondie45 New Member

    Yes now that it is cooler outside I get those "I am freezing" episodes every day. In the summer it was the opposite and I was "HOT" all of the time. Cannot win!!!
  12. elsa

    elsa New Member

    Hi Annie,

    There have been alot of studies dating back to 1997 proving dysregulation of the HPA (hypothalamus-pituitary-adrenal)axis in patients with CFS/FM. Dr. Yanus, rheumatologist and medical professor at University of Il. medical school spoke of this at a Fibro conference.

    Many other CFS/FM specialists have since backed this up with more conclusive studies.

    The problem is getting proper testing and treatment. For freezing cold in unrelistic temps., perpetually cold hands and feet, diffuse hair loss, dry shin, etc the thyroid gland should be looked at.

    The numbers on the "normal reference range" differ from lab to lab and they are an average of a small number of individuals tested. Age and gender are not considered.

    Besides asking for the TSH, T4 and T3 tests, also ask for free T4 and free T3. ALso include reverse T3 in testing.

    Many times TSH may be normal but the body will have difficulty converting T4 into the usable T3 or during the conversion process, T4 will be converted into reverse T3 .. (which is an improper, inactive by-product of the conversion process)causing the hypothyroid symptoms.

    Many doctors overlook the peripheral T4 to T3 aspect of the thyroid mechanism.

    In my opinion, compounded thyroid medication is best. Many doctors rx synthroid which is synthetic, but it also only has "T4" in it ... mostly CFS/FM patients who are also hypothyroid benefit from T3 medications .. or at least a combo of both.

    In 1997 the FDA re-classified all products made with T4 levothyroxine (including synthroid) as new products as their stability and potency were problematic.

    Many doctors will treat if TSH is higher then 1.5 ( "normal range" = 4.5 - 5.50 )and/or low to low normal T4 and T3. Also included in their decision process is high rT3.... rT3 shouldn't be greater then 145pg/ml.

    I hope this helps some. The trick is to find a doctor who is well versed in the HPA axis and fibro/cfs patients. With treatment, some of the symptoms start to decrease almost immediately. Maybe not optimal for a while, but definate improvements.

    As an added note ... unbalanced hypothyroid numbers can lead to coronary heart and other vascular diseases, stroke and high blood pressure. It also contributes to memory and concentration problems. Just what we need!! LOL

    Take care,

  13. ulala

    ulala New Member

    I used to live in New Jersey and moved to Calif. because I was just TOO cold. I'm still cold here. Have low-normal thyrodi tests. My doctor started me on Synthroid, which has helped some, it has stopped my hair from falling out but I am still cold.

    I am seeing Dr. Holtorf at the FFC in Torrance, Ca. this week and will ask him for T3. Read this article on Wilson's especially if you have low body temp. When I have a flare I am always freezing, with chills. I have started taking my temp. during the flares and it is always in the 96.5 or lower range. Try doing this when you feel bad and see if your temp is low.

    Wilson's Thyroid Syndrome
    Is Your Body Temperature Below 98.2ºf?

    Important Update: I have completed treatment for Wilson's Thyroid treatment for the time being. I did see partial improvement, but not a cure. See below.

    Seaonal Affective Disorder can also cause severe fatigue and a low temperature. See my page for more information.

    If your body temperature is routinely below 98.2ºf, you may have a thyroid problem and you should be tested for the common thyroid problems using the TSH test, but if your body temperature is low and the test is normal, you may have Wilson's Thyroid Syndrome.

    The most important thyroid hormone is T3, but it varies considerably depending on the person and time of day, so it cannot be accurately measured directly. The most common thyroid test is the TSH test. This measures the level of thyroid stimulating hormone. If this is in the proper range, then most doctors believe you don't have a thyroid problem no matter what your other symptoms are. The problem with this is no one has ever proven that a normal TSH test always means that you have adequate T3. According to Dr. Wilson, you can have low levels of T3 and have a perfectly normal TSH test!

    Dr. Wilson has a protocol which is effective for many people and his site has a list of doctors that use it.

    Dr. Wilson's treatment is very controversial, and his license was taken away after one woman suffered a fatal heart attack. There is little question that his alternative approach is controversial and angered the medical board. The fact is that doctors treat thousands of patients per year and odds are that several will have heart attacks.

    More information is available at the Wilson's Syndrome site:

    Dr. Wilson's site.

    Doctors who treat Wilson's Thyroid Syndrome


    If you have heart disease, be sure to tell your doctor. T3 therapy can cause rapid heartbeat and put a strain on the heart. Many people including myself have ended up in the hospital wondering if they might be having a heart attack. It was in fact an anxiety attack, a rather miserable condition that in fact has little to do with psychological stress. It has however been related to low thyroid.

    Despite this, I am having good results and I am continuing the therapy. My prostate problems have improved. My energy and concentration are better. Even my back problems are better.

    According to Dr. Wilson, 65% of all patients have a total improvement, Another 25% see a partial improvement, and another 10% see no improvement. I am in group 2.

    I did discover that the adrenal extract I was taking seemed to be interfering with the treatment, so I discontinued it and have been doing much better. The only supplement I am now taking is guaifenesin.

    In view of the dangers of rapid heartbeat, I would recommend that you review anything that you are taking that might be a stimulant and might contribute to this problem.

    My Results

    I spent two years trying this therapy. I did see partial improvement. I kept trying different variations. I did eventually find a variation that helped a great deal. See "The One Microgram Variation" below.

    I certainly felt it was worth it and may well try it again in the future. At this time, I am trying light treatment for Seasonal Affective Disorder. This also affects temperature. See my page on this condition.

    If You Decide To Try It

    The treatment requires taking time released T3 medication at the same time everyday. I strongly suggest you get the doctor's manual and read it carefully. There are a few suggestions I will make to anyone trying this.

    The index is terrible, so mark the book as you read it for later reference.

    The dosage of medication varies and may have to be changed on a daily basis depending on the average of three oral temperatures. Make sure you understand when to increase the dose and when not to.

    The doctor's manual emphasizes the idea of "capturing your temperature." To do this, you must understand the concept of "compensation time". You will have to determine if you are a one day compensator, two day compensator, three day compensator, etc..

    You should understand the idea of "unsteadiness" and know what to do about it if it happens to you. (You may want to have your doctor write a prescription for .025mg of T4 so you will have it to treat unsteadiness if you need it.)

    If you are mentally foggy, you may want to have someone else read the manual and help you.

    I did find that I had fewer side effects and the therapy was more effective after I discontinued the adrenal extract I was taking.

    The One Microgram Variation

    If you read Dr. Wilson's protocol, you will see that he recommends increasing the dose by 7.5 mcg increments depending on daily body temperature readings. I found this did not work well for me. I did find that varying the dose by just one microgram I had much better results. This takes much longer, but I found it was worth it.

    I found that if my T3 dose was too low, my temperature remained low, but I also found my temperature would remain low if my dose was too high. I had to find exactly the right dose and I found that the window for this dose might only be a few micrograms. If I were one or two micrograms too low, I wouldn't get good results, but if I were one or two micrograms too high, I also didn't get good results. If I raised my dose by 7.5 mcg, I might go right past this window! I found that the best way to hit this window was to raise my dose by only one microgram at a time instead of the recommended 7.5mcg. Consult your doctor if you think this is right for you.

    Wellness Pharmacy charges a bit more for nonstandard doses, but it is worth it. Their standard doses include 3.75 mcg pills in addition to 7.5, 15, 22.5, etc.. I ordered nonstandard doses of 1, 2, and 3 mcg. I would start with 1 mcg, then 2 mcg, then 3 mcg and then go to 3.75 mcg. I would then go to 4.75, 5.75, 6.75 and then go to 7.5 mcg, etc. by combining the different pills.

    Risks Involved: The treatment may not be suitable for those with heart disease.

    See Warnings section above.
    Doctor Needed: See the Wilson's Thyroid Syndrome web site for doctors who treat the condition.
    Effectiveness: According to Dr. Wilson, 65% of all patients have a total improvement, Another 25% see a partial improvement, and another 10% see no improvement.
    Difficulty: The treatment requires taking at least three temperatures per day and taking medications at exactly the right time twice per day. You should read and understand the doctor's manual. Medication dosages may have to be changed daily based on several factors.
    Costs: The cost of medication is approximately $150 per month.

  14. CAAnnieB

    CAAnnieB New Member

    I'm so sorry to have not thanked you all sooner! I'm usually prompt about getting back to those who have taken time to reply & share. Thank you for all your suggestions & info!!!

    Elsa, I really appreciate the info about the Thyroid hormones. I really have suspected that my symptoms are caused by hormonal imbalances. As I said in my other post; I will have to dig out my old lab results to see if they tested for the reverse 3.

    ulala, Thanks for the Wilson's Thyroid info. You are the 2nd person to tell me about it! The other is a coowner of a Health First supplement/ compounding pharmacy store near me. I don't buy tons there as I usually purchase from my Holistic Dr...But she directed me to the website & can you believe that I don't even recall how our conversation ended up there?! My brain is SO bad with memory lately. I'm trying to remember why she would have thought I might have that problem!...Hmmm...Oh well, I am for sure going to check my old labs & find a DR who will treat based on symptoms...

    This thread might help the other woman (Sheila1366) who recently posted about being cold all the time. Hope she sees it!

    Blessings & Hugs,

    [This Message was Edited on 11/13/2005]
  15. Jeanette62

    Jeanette62 New Member

    I had trouble all summer feeling freezing cold all the time. I live in CALIF too and have all my life so I just didn't understand it. It could be 90 out and my upstairs could be really hot and I would be under the down comforter in bed upstairs and still feel cold. Thought I was crazy and didn't know what was wrong with me.

    If I went in to Oakland for a family event and hit a cooler day I would get the chills and my teeth would chatter. My daughter was with me one evening after visiting my cousin, and she couldn't believe it because I never use to get cold and was generally warm blooded. Noone else was cold, chilled or shivering only me.

    My thyroid TSH test in Aug. was considered normal at 1.12 and in Oct. was 0.63 prior to that in May it was low .35 but the T4 Total was high at 15.4. In Mar. the TSH was low .36. I think my PCP wasn't sure what to do with it flucuating other than watch it. I had lots of other symptoms besides being cold all the time. Hopefully my new doctor will figure out if something needs to be done.

    It's good to know I'm not the only one with this problem.

  16. hehmommy

    hehmommy New Member

    I couldn't figure out why I was exceptionally tired and freezing all the time so he checked my Thbroid and that came out normal, but he decided to check my iron levels. he said that can cause you to feel cold all the time. Sure enough I was very very low almost to the point of Anemia. Now that I am getting more Iron in my diet I find I am not as cold and the tiredness is not there like before. I know a lot of us with this FM and CF have a tendency to have bad eating habits. I know sometimes I just can't bring myself to eat because of the pain and other times all I crave is certain foods that just aren't that great. Have your doctor check for low iron. You might be surprised. Most people don't even know they are Iron deficient until their levels get so low that you are not able to build those large cells up anymore and you are always Anemic. So better to check it now.

  17. blueseat23

    blueseat23 New Member

    Dear Annie,

    Just be grateful that you don't live in the u.k.
    80 degrees would be a heatwave, at the moment the centigrade temp. is about 8-10 degrees outside
    and even inside a centrally heated house both my hands and feet are freezing.
    It may be a hormonal thing as a lot of advice for people feeling the cold is to take fish oil supplements omega3's etc.these do have a hormonal effect.
    Cayenne pepper is another possibility often mentioned
    on web sites etc,
    Personally i think various medications, in my case amitriptyline anti-depressants may exacerbate the coldness.
    if things do not improve i will have to think seriously of wearing gloves INSIDE the house.
    the weather forecasters in the u.k. are predicting a very cold winter i just hope their wrong.
    One thing i can assure you is that you are certainly not alone as many people with F.M. or as withmyself C.F.S. seem
    to suffer come winter time.
    My hands are currently like thin icicles that i have to melt under a warm tap every so often,
    If you have not tried the omega 3's fish oil supplements then i can recommend them to a point, my problem is that i cannot take them every day as they effect other meds i am taking,
    goodluck and stay warm!
  18. CAAnnieB

    CAAnnieB New Member

    You are so right...I would never be able to live in a very cold climate anymore!

    Thank you for your suggestions. I'm glad you mentioned the Cayenne because I have been straining my Fibro brain to remember that one! I KNEW there was something plantwise to warm me up but couldn't recall the name! I'll give it a try.

    I'm now very curious what medications do not mix well with the fish oil...I've never heard of any contraindication when taking the Omega 3's.

    I've been thinking back to when I grew up in Buffalo, NY...I remember being cold even in a warm house in the winter. But I also would bundle up as a teen & go skiing in the coldest of weather! I don't remember the cold keeping me from enjoying the skiing, even in blizzards!

    I really think this condition of being EXTREMELY cold intolerant has happened over the past 8 years or so...It seems to be worsening each year. This year it has been terrible. I am only "comfy" when it's between 80 & 90 degrees! Any lower, I start to chill. Any higher & I swell with the heat & feel lifeless! Very weird...I've been trying to think of somewhere I could live where it's warm all the time. Maybe Hawaii? Sounds wonderful to me!

    Thanks for replying! How cool that I am writing to someone in England!

    Blessings & Hugs,
  19. CAAnnieB

    CAAnnieB New Member

    Jeanette, I know the feeling about being the only one who feels cold! I clicked on your profile & it jogged my memory about Wasabi's post re : Dr. Powell. Are you going to see him? I think I am going to make an appt soon with him. I looked at his website & it appears he does the same extensive testing as Teitelbaum & the FFC's. Let me know if you see him, OK?

    Trish, I think I was tested for anemia. I found my old lab results (from January of this year) today & I tested high for B12 & normal for serum Folate.My Hemoglobin last December was 12.9 (12.0 is lower end of normal) Is there another test that should be done for Anemia?

    Thank you for your replies. I WILL get to the bottom of this sooner or later! Hopefully SOONER.

    [This Message was Edited on 11/14/2005]
    [This Message was Edited on 11/14/2005]
  20. blueseat23

    blueseat23 New Member

    Dear annie,

    Just to let you know after freezing for much of sunday
    and monday i took a omega 3 fish oil capsule and
    although it took some 4 to 5 hours for the full affect
    to work i can tell you that it really DOES warm you up,
    you can actually feel the blood coursing into the veins
    of the hands and feet .

    Quite simply this is the warmest i have felt for
    about 4 days.

    The point i was making about omega3's is that although
    they do not interact in the normal sense it's just
    that they are a natural anti-depressant and if like me
    you are taking anti-depressant medication then it is
    nigh impossible to regulate the dosage if taking the two
    at the same time,

    One great panacea that i simply must mention to you
    as i do anyone suffering health problems is the magic
    of GARLIC capsules!
    If like me you cannot stand the odour then taking
    odourless capsules once a day just about guarantees
    no colds, coughs, sore throats or influenza.
    They are also excellent for the sinuses and like the
    omega3's affect circulation.

    I have tried cayenne pepper but i found it quite
    difficult to absorb without it making the throat
    pretty sore, the garlic mentioned above does a very
    similar job and is much easier to consume.

    If you are still feeling the cold though you must
    at least ONCE try for yourself the omega3's.

    you will know within 4 or 5 hours whether they are
    going to work for you and if like me yesterday you
    will be pleasently surprised to find just how much
    of a difference they can make.

    Hope things warm up for you over there,
    I wish my thermostat showed 71 degrees!


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