I could sure use some help here. Some of you may recall that I posted in May 2011 that I was having trouble with what seemed like Thyroid problems, fatigue, low body temperature and problems recovering from exercise. I still have these problems and they seem to be getting worse and I need some help on how to goose my medical team into action on this. At this point, all I get is head scratching, here take this pill for symptoms and "it must not be serious if you are still alive."
I had a whole bunch of tests done which seemed to rule out the simple things like Hashimotos and basic primary and secondary hypothyroidism and in October I was found to have Obstructive Sleep Apnea (OSA). So I spent the next six months trying to get effectively treated for the OSA and finally I have a machine which has gotten me to the point where I only wake 7-8 times/hour. The sleep doctor feels that is the best we can achieve and has now prescribed a "stimulant" to address my fatigue.
But I think this may be a big mistake. My basic symptoms are unchanged but my blood sugar is out of whack, particularly my Darn Phenomenon and my insulin requirements are up 25%. I think I may have some sort of adrenal problem already and a stimulant may be the last thing I need.
Here are the basics of my test results.
Test
Ref Range
TSH
1.3
.4-4.5
Free T4
1.3
0.8-1.8
Total T3
87
76-181
DHEA-S
293
25-240
Cortisol
14.5
4-22
Ferritin
131
20-380
Iron
72
45-170
TIBC
334
250-425
Iron Sat
22
20-50
B12
745
211-946
My body temperature is highly variable, between 93 and 95 deg F in the morning and on average 95 deg during the day, but it has swung as high as 97 deg F. I have checked my temperature daily (sometimes multiple times) with three different thermometers over more than a year. These are actually my temperatures and they have been confirmed on doctor visits.
My vitamin D is fine, I have regularly had it tested and I supplement.
So I could use your help in how to engage my endo in trying to track this down. I have an endo visit in two weeks. What test results should I ask for? Should I press for certain treatments? Should I see another specialist? Should I press for X-Rays or ultrasounds of my "glands?"
I can relate to your problems. I have not monitored my temperatures like you did but I am always on the lower side. As a desk worker I have down-regulated my metabolism too. But I still think it is related to the Thyroid but like you my TSH, T3 and T4 is normal. Vitamin D can be ruled out for you and for me it did not make any difference. The following might be helpful but I am not convinced. For the following orchestration to go wrong it needs neurological problems on a more severe scale in my opinion:
The hypothalamus gland, located at the base of the brain, controls internal body temperature. This gland responds to sensory signals from temperature receptors in the skin and deep inside the body. The hypothalamus establishes a "set point" for the internal body temperature, then constantly compares this with its own actual temperature. If the two temperatures do not match, the hypothalamus activates temperature-decreasing or temperature-increasing procedures until the temperatures are equalized.
Sources: Guyton, Arthur C. Textbook of Medical Physiology, 8th ed., p. 802; Selkurt, Ewald E. ogy, 5th ed., p. 169.
The following conditions should be considered too:
Thanks Holger. There may well be something with my hypothalmus or pituatary, I just don't know how to test and diagnose for it. My endo has queued up an IGF and GH test, but I don't know what they would say.
I doubt it is Raynaud's, that generally affects blood flow and temperature regulation in the extemeties.
And I sorta ruled out Addison's. From your link:
Addison's disease is an insidious, usually progressive hypofunctioning of the adrenal cortex. It causes various symptoms, including hypotension and hyperpigmentation, and can lead to adrenal crisis with cardiovascular collapse. Diagnosis is clinical and by finding elevated plasma ACTH with low plasma cortisol. Treatment depends on the cause but generally includes hydrocortisone and sometimes other hormones.
I have hypertension and no hyperpigmentation and I seem to have elevated cortisol. And the other results don't seem to match, I have normal electrolytes and I am not hypoglycemic. Still it is worth asking the doctor.
And the whole Wilson's Temperature Syndrome. Oh boy. The American ThyroidAssociation has denounced it and I don't want to argue about an unrecognized condition. But in either case, I do have a low T3 and low body temperature. In truth, I might respond to T3 treatment just as recommended by Wilson.
Thanks. I do think you are right, as diabetics we are at higher risk of hypothyroidism. I have had slightly high blood pressure, but much of that could be the OSA which clearly raises blood pressure. And if I do have some adrenal problem that can cause high BP.
Weird...my temperature has always run in that range as well.
Bsc, your mention of pituitary made me think of my youngest brother, who is not diabetic but has had similar symptoms for the last couple of years. He's been doctor to doctor trying to figure out what it is.
Part of my brother's puzzle lead to him finding that he has low testosterone. I don't know if you've had your testosterone level checked? Although my brother's bg level has been normal thus far, I have read that there is a link between Type 2 diabetes and low testosterone.
My brother's doc did an MRI of the pituitary when his bloodwork showed low testosterone to check for some kind of pituitary tumor that could cause this but he didn't find anything -- I've talked to a couple of other men who have been through this process and I think the MRI is one of the screening steps for diagnosis.
I don't know if it's realted in any way, but my brother was also diagnosed with severe sleep apnea and has the machine also. When he went to the sleep lab, they woke him up and put the mask on him before the night was over because it was so bad.
I really empathize with you. The hardest part sometimes is finding the right doctor to make the connection. My brother still hasn't completely diagnosed his issues. Like you, his bloodwork is in normal ranges (other than his testosterone level).
I don't know that any of this helps but I wish you the best in finding some answers.
About 7 years ago I submitted to statination and my testosterone dropped like a rock. At the time, I had X-rays of my pituitary to look for tumors and then was started on hormone replacement. That caused side effects, most notably extremely high blood pressure, I ended up having to stop the statins and my testosterone and other symptoms all got better. I have had recent testosterone tests and it is normal. I do think that low testosterone is common when you have diabetes.
Very astute observations. I see you have really been studying this. My Free T3 was last tested a year ago. It sounds like I should really get a Total T3, Free T3 and reverse T3. Has anyone been successful getting a reverse T3 test ordered from a mainstream doctor?
Have you added an iron supplement? At 22 you are on the low side, I would also like to see your B12 closer to 1000, especially if you are over 40. The US cuts normal B12 at under 250 but outside the US they like to see minimum reserves at 500 and even under 1000 you could have some symptoms.
Do you have any older records to bounce these numbers against? Specifically your T3? You could be dropping and as a result experiencing hypo symptoms.
Good luck
I have not been taking iron supplements but it is in my high performance vitamin (50% RDA). And given my diet, regularly eating things like liver, it seems unlikely that I would benefit. In either case, I am happy to try it. I take a B-100 supplement which provides 1600% of the RDA and my diet is high in meat and seafood, it am probably at the max I could achieve without injections.
I looked through all my test records for the last 8 years and never had a T3 test. I had TSH tests and a couple of T4s, but no T3s.
Thanks, it is my understanding that if I know my total T4 and the Total T3 I can get an idea of how much Reverse T3 I have since the T4 will convert to either T3 or Reverse T3 and the Reverse T3 is roughly T4 - T3. Is that true?
ps. I avoid soy almost completely as well as being almost gluten free.
So today I composed a fax to my endo. I asked for a retest of my Total T3, Free T3 and reverses T3. She approved those tests and they should be ready for my appointment next week. I'll report back on how things go.
All my thyroid tests came out normal. In particular, the Free T3 was right in the middle despite my total T3 being low before. My endo is not willing to explore thyroid medication (like Cytomel) but feels that my body will likely compensate and my problems (like with body temperature) are probably not caused by the thyroid hormone levels.
So we are exploring some other things. She was intrigued by my comments that I was craving salt and have had some hot flashes, so she is ordering more cortisol tests suggesting that I might have Cushings. And she was concerned about my testosterone levels, so she ordered more tests. And she have me a prescription for Clomid which should stimulate for androgen hormones. So we shall see, the adventure continues.
You can't really calculate RT3 from those totals. Important to know the ratio of RT3 & T3. A healthy ratio is 20 or over. An option is to pay for your own RT3 test. I got mine done by being sneaky. I called the doctor's office & said an error was perhaps made because RT3 wasn't included. Sheer luck & chutzpah that they sent another Rx.
Something to bear in mind is that thyroid advocates strongly believe "normal" range levels are too low. Low body temp is one indicator of thyroid problems.
People can produce sufficient amounts of T4, but be unable to convert it. Cortisol & ferritin are crucial components of this process. Your Fe staturation, iron & ferritin are low.
Sufficient cortisol is needed for cells to utilize T3. The cortisol test you had isn't an effective measure of adrenal function. A saliva cortisol test is needed. It tests cortisol four times a day. Cortisol levels change during the day. Not expensive to get this done yourself.
If there's hypothyroidism the adrenals kick in to make up for the lack of thyroid hormone & this can cause overtaxing of the adrenals & potential burn out. A vicious cycle.
There are ways to aid the adrenals.
Guess you can tell I've been dealing with both conditions.
Other goitrogens besides soy, though soy's a biggie to avoid.
Well, I did get retested and the tests included reverse T3(RT3). I calculated my ratio, 13.3. Not over 20, but somewhat borderline.
You can see my additional tests below. Pretty much my tested thyroid levels are mid range, including Free T3 and RT3.
I almost totally avoid all soy, although I do eat pretty high amounts of brocolli and cauliflower.
My doctor is going to look at the whole cortisol thing. I've started to wonder whether some of this is my body fighting against lower fasting blood sugars. This all started soon after I began using insulin and dropped my fasting blood sugars from 120-140 mg/dl to 80-100 mg/dl. I've always wondered whether I might be MODY-2 which has a higher blood sugar set point. The counterregulatory hormones include of course cortisol.
My ratio is 12.9, close to yours, & I don't feel normal regarding energy level & other hypo symptoms. My previous ratio was 9.2. Slowly inching up thanks to the additional of T3 to dessicated thyroid. My iron panel was completely in range & yours is low. I was hoping iron was my problem since that's easy to address.
Interesting you may be MODY-2. Man, the endocrine system is one intricate thing.
My doctor was not averse to trying T3, but felt that my problems (particularly body temperature) were exaggerated enough that it was unlikely to be simply a borderline hypothyroid issue.
And she thought my iron was fine. I will ask again.
I highly recommended you study “Stop the Thyroid Madness” website which has detailed information on optimal levels of free T3, reverse T3, and T4, and TSH. Although your thyroid numbers are “in range” they’re not optimal and you’re symptomatic. Low body temp, fatigue and constipation are some symptoms of hypothyroid. I had those symptoms.
I finally found a doctor to think outside the box and prescribe Armour which is a natural dessicated thyroid containing T3 and T4.
That plus adrenal support supplements have restored my quality of life. My body temp has climbed to 98.4 after hanging at 97.8 for years and I feel much better.
I found my doctor through a list on a Yahoo Group called Natural Thyroid Hormones. Also make sure your testosterone is optimal. I started bioidentical hormones including testosterone and my insulin requirements have significantly decreased. Please pm me if you want name of adrenal supplement. Good luck.
