Hello everyone! I was wondering if you wouldn't mind reading my story and letting me know what you think. I would appriciate hearing what someone other than a Dr has to say!!
Really quick (I hope),
I thought I had PCOS. Went to my Dr, she said probably not. I will run some tests. Only test she did was to see if I had IR. I did not. My fasting insulin levels were 3. I asked her, "what about my testosterone?" She said, if you have any other concerns to see my OB.
Told my OB, she said, probably not. I will run some tests. She tested me for diabetes and my testosterone and also my DHEA. My fasting glucose was 89, my test. was 24 and I forget my DHEA, but it was normal also.
Not convinced, I went to a Endo. She ran almost everything and the only thing that was not right was my LH/FSH ration. 4:1. Gave me BCP's and sent me on my way. I took them one moth got ill and stopped. (I have been on BCP's for 15 years)
Went to another Endo that specialized in thyroid. He by far did the most comprehensive testing. Said he didn't think I had PCOS, that the other Endo didn't have me take the tests on the right days. Ran the most tests I have had by far. Said my LH/FSH ratio is fine. No PCOS. Thought I might have been hypothyroid, but said that was all normal. Thinks most of my hypo symptoms are due to low blood pressure. (105/65)
Went to derm. to see why I always break out at 34 and why I am losing my hair. She looked at my results from the Endo and thinks I have Hyperthyroid and is sending me to another Endo for a second opinion.
WHEW! What a journey!
My symptoms:
acne
hair loss
mild excess hair
always freezing
extremely tired ALL the time
dizzy
very oily hair and skin
anxious
weight gain
IBS
chronic yeast infections
very slow pulse rate
sometimes my heart rate is very very fast and sometimes it skips for lack of a better word
and now I feel like I can't breathe, like I am having panic attacks.
The acne hair loss and oily skin and hair has gotten worse since I stopped taking BCP's and stopped having children.
SORRY! long, I know. Here are the test results:
TSH: .66 normal range is .40-5.5
T-3 Total: 182 Normal range is 60-181
T4 Free: .9 normal range is .8-1.8
Showing borderline hyper, I show most signs of Hypo. I am confused. Any other test results you would like to know? I am very curious what you all have to say about the thyroid issue.
Thank you for taking the time to read this long long post!
Wow, you certainly have been through the endocrine jungle! You have a complicated case for sure. I'm going to take a stab at this, but that's all it is is a stab. You really need to find a an endo who is willing to investigate this further for you.
Your confusing thyroid test results could be a result of impaired pituitary function. When the pituitary isn't working right, the test results look just like primary hypothyroidism except TSH is low (like yours is). Your FT4 is rock bottom in the lab range, yet your T3 is high. So you have a high conversion of T4 to T3 but the TSH isn't rising to help T4 production. That indicates a problem with the pituitary.
Here's a blurb about this:
Quote:
If the T4 level is low and TSH is not elevated, the pituitary gland is more likely to be the cause for the hypothyroidism. Of course, this would drastically effect the treatment since the pituitary gland also regulates the body's other glands (adrenals, ovaries, and testicles) as well as controlling growth in children and normal kidney function. Pituitary gland failure means that the other glands may also be failing and other treatment than just thyroid may be necessary. The most common cause for the pituitary gland failure is a tumor of the pituitary and this might also require surgery to remove.
Here is a link to a comprehensive article about hypopituitarism, along with a blurb from the article that lists possible symptoms. You'll notice several of your symptoms listed there:
Quote:
Symptoms of hypopituitarism vary with the affected hormones and severity of deficiency. Frequently, patients have had years of symptoms that were nonspecific until a major illness or stress occurred. Overall symptoms may include fatigue, sensitivity to cold, weakness, decreased appetite, weight loss and abdominal pain. Low blood pressure, headache and visual disturbances are other associated symptoms.
The pituitary gland is responsible for regulating many other endocrine functions, including the adrenal gland. Your low blood pressure may be a result of adrenal hormone deficiency. So keep being as proactive as you are about this and get a doc to run the appropriate tests to help you sort this out! The article at the above link discusses tests needed for a diagnosis.
Good luck
Linda
__________________ dx pcos 1984, type II diabetes 2001, also hypertension
Met 2000mg since 2001, started Glucophage XR 4/22/04, then switched to Met ER 6/04; also: multi, Vit. C, Vit. E, B12/folic acid combo, fish oil & borage oil combo, garlic capsules, cinnamon, Vitex, calcium with magnesium/zinc, biotin, CoQ10, selenium,iron
Other meds: Verapamil and Altace(for blood pressure)
Started laser hair removal 7/29/03, completed 3/04 (it works!)
UAE for fibroid 3/24/03 and 3/16/04
I'm having the same thing going on with my thyroid...I just got my results and my TSH was 0.82...last year it was 1.42...I think the ATA (antibodies) is killing off my thyroid...my RE is still waiting for my T4 and T3 to come back...I'm a VERY, VERY annoyed because I feel like I have to keep pushing for all these tests and I'm not getting anywhere.
Linda, you have great information.
__________________ TWINS!!!! C-section On April 9, 2007 Angelo Joseph, 5lbs 12oz Antonia Angelina, 7lbs 2oz
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Now that you mention it, I think my OB tested my Pituitary when I first came to her. She said that an sudden increase in hair or hair loss could mean a tumor on the Pituitary, so she tested it. She said it's normal. I have come to learn that normal means nothing!
I will have to call to see if I could get the numbers for it.
I have never had my adrenal glands looked at though. I wonder why one Dr will test something and the other won't? Very frustrating.
this is exactly what is happening to me right now. I have had it before, but it only lasted 15-30 minutes. I have now had this going on for 5 days straight. It's horrible!
My appt for the Endo is not until next wednesday, I am not sure what I shoudl do. Should I call my regular Dr (who has no idea I am going to the Derm or the Endo)? Or call the Endo?
once I had my TSH tested and that came back .59. But I just found out that they tested my total T4 and that was a 7.8. Can someone tell me what that means?
once I had my TSH tested and that came back .59. But I just found out that they tested my total T4 and that was a 7.8. Can someone tell me what that means?
THANK YOU!
Please post the lab range. However, since you had a free T4, it really doesn't matter what the total T4 is (the Free T4 tells how much of the hormone your body is actually USING, whereas the total just tells how much is circulating in your blood). It would be interesting to see what your Free T3is, and it wouldn't hurt to get tested for thyroid antibodies, too.
Linda
__________________ dx pcos 1984, type II diabetes 2001, also hypertension
Met 2000mg since 2001, started Glucophage XR 4/22/04, then switched to Met ER 6/04; also: multi, Vit. C, Vit. E, B12/folic acid combo, fish oil & borage oil combo, garlic capsules, cinnamon, Vitex, calcium with magnesium/zinc, biotin, CoQ10, selenium,iron
Other meds: Verapamil and Altace(for blood pressure)
Started laser hair removal 7/29/03, completed 3/04 (it works!)
UAE for fibroid 3/24/03 and 3/16/04
Thank you so much nobimbo. I know that you hear it all the time, but you are a wealth of information! I appriciate it.
I went in to urgent care about the not breathing, the first thing the Dr asked was if I had a thyroid problem. She tested only my TSH and it was .88. But told me to keep the appt for the Endo on Wed.
I was wondering what exactly I should ask for. I have had TSH tested so many tiems I can't count now, and the ones above. I hear you talk about antibodies, I have never had that tested. Should I ask for that? I also will ask for my pituitary and I think I am going to ask for them to test my adrenal glands. Any others you think I should ask for?
Thyroglobulin Antibodies and Thyroid Peroxidase Antibodies (to check for Hashi's and Graves)
Free T3
full iron panel (including ferritin; you have to specifically ask for ferritin because it's not a routine test...low ferritin. even if in lab range, can cause hair loss, feeling cold, tiredness; in other words, it can mimic hypothyroidism)
progesterone and estrogen (too much estrogen can bind thyroid hormone, low progesterone can inhibit thyroid function)
free and total Cortisol
ACTH stimulation test
A link to a good article about the adrenal/thyroid connection and explanation of testing:
__________________ dx pcos 1984, type II diabetes 2001, also hypertension
Met 2000mg since 2001, started Glucophage XR 4/22/04, then switched to Met ER 6/04; also: multi, Vit. C, Vit. E, B12/folic acid combo, fish oil & borage oil combo, garlic capsules, cinnamon, Vitex, calcium with magnesium/zinc, biotin, CoQ10, selenium,iron
Other meds: Verapamil and Altace(for blood pressure)
Started laser hair removal 7/29/03, completed 3/04 (it works!)
UAE for fibroid 3/24/03 and 3/16/04
If I might throw in my 2 cents I was diagnosed with PCOS in 1998 and the only thing I remember is that my OB wanted a please excuse my spelling he wanted a sonagrahm done because I believe he told me that was the only was to tell for sure that someone had PCOS because of the ovarian cysts as for the thyroid problem I am in the same boat since 1998 my doctor has been telling me that my thyroid is border line but the funny thin is that my mother my grandmother my aunt and my sister are all on the synthroid but not me anyway just be causious and always get a second opinion that is what I have learned through my years of battling doctors over this but anyway best of luck to you my thought and prayers are with you!!! Tia
wife to Victor expecting baby via adoption is November!!!
he wanted a sonagrahm done because I believe he told me that was the only was to tell for sure that someone had PCOS because of the ovarian cysts
Many docs are still confused about how to diagnose PCOS. Not everyone with PCOS has cysts on her ovaries. There are many different variations in the syndrome; it is much more complex than just ovarian cysts and the name "PCOS" is a misnomer.
Some info about PCOS Variants:
1. traditional PCOS -- anovulatory, increased androgens, no insulin resistance
2. endocrine syndrome X -- anovulatory, increased androgens, insulin resistance or type 2 diabetes
3. non-traditional PCOS --anovulatory, normal androgens, obese, insulin resistant or type 2 diabetes
4. non-traditional PCOS -- ovulatory, increased androgens, mild insulin resistance
5. idiopathic hirsutism -- ovulatory, increased androgens, no insulin resistance
In 1990, the National Institutes of Health formed a group to investigate PCOS. Even though no consensus was reached regarding the name of this disorder, which remains controversial to date, diagnostic criteria were determined.[51] The consensus was that women who present with hyperandrogenism and chronic anovulation, in the absence of congenital adrenal disorders, Cushing's syndrome, hyperprolactinemia, or tumors should be diagnosed with PCOS.
More info, about polycystic ovaries:
A spectrum of sonographic results may be found. Polycystic ovaries may sometimes be absent in women with all other classic clinical characteristics of PCOS. This may be in part due to the resolution of ultra-sonographic technique. For example, abdominal ultrasounds are much less sensitive than trans-vaginal scans.[1] Since ultrasound diagnosis alone is not sufficient to diagnose PCOS, similar treatment protocols should be considered in cases where endocrinologic findings exist, but no polycystic ovaries are found. At the same time, the presence of polycystic ovaries alone is not consistently linked to clinical or biochemical abnormalities as evidenced by a study of postmenarchal women (ages 18-25 years) recruited from the general population for a women's health study.[56] This study detected the presence of polycystic ovaries in 33 percent of the population, suggesting this may be a "normal variant" of ovarian morphology. These findings can only be confirmed by performing a large-scale prospective study to follow this group of women to determine any long-term risks. Table 2 outlines some of the most important diagnostic criteria for PCOS.
__________________ dx pcos 1984, type II diabetes 2001, also hypertension
Met 2000mg since 2001, started Glucophage XR 4/22/04, then switched to Met ER 6/04; also: multi, Vit. C, Vit. E, B12/folic acid combo, fish oil & borage oil combo, garlic capsules, cinnamon, Vitex, calcium with magnesium/zinc, biotin, CoQ10, selenium,iron
Other meds: Verapamil and Altace(for blood pressure)
Started laser hair removal 7/29/03, completed 3/04 (it works!)
UAE for fibroid 3/24/03 and 3/16/04
I went to the Endo today. She was very nice and very helpful.
She told me those test results tell her nothing. And that taking them on the 3rd day of your period is not ideal, because that is when everything is your body is low. Your Estrogen, testosterone, everything is low.
So she ordered new tests. Here they are:
ACTH
ANA (antinuclear Antibodies)
Cortisol (which she said is checking the adrenals)
Creatnine, serum
Electrolyte panel
DHEA-Sulfate
Estradiol
FSH
Glucose, serum
LH, serum
Prolactin
RA factor
Testosterone, free and total
TSH
Thyoxine free
T3 free
Thyroid Peroxidase Antibody
I didn't have to ask, those are what she ordered. The only one I mentioned was progesterone. She said she never tests that because there really is no way to treat it. ??
So, hopefully we will get the results soon. I went to Dr. Rees-Jones, if anyone has heard of him. I heard great things about them. So we'll see.
Sorry you didn't find a reason for your symptoms, but it's good that your test results were all normal. Doesn't look like you were tested for your iron status. Did your GP do a complete iron panel when you were there last? Many of your symptoms could result from iron deficiency anemia (or low ferritin..which is your iron stores....even if the other iron tests are in normal range). Another type of anemia is pernicious anemia (results from a B12 deficiency). Have you had your b12 tested?
I have seen both slow heart rate and fast heart rate listed as symptoms of anemia. Here's one list:
While most people with mild anemia have no symptoms, when present, symptoms may include:
Fatigue
Increased skin pallor
Fingernail changes
Weakness
Dizziness or light-headedness
Headache
Decreased work capacity
Slow pulse
Cold intolerance
Heart palpitations or fast heart beat
Decreased resistance to infection
Hair loss
Shortness of breath during or after physical activity
Here is a link to info about anemia and hair loss:
Stopping BCP's can also cause some of your symptoms, such as hair loss. That's usually a temporary thing until your body adjusts.
Btw, the Thyroid Peroxidase (TPO) test was to see if you have thyroid antibodies present (Hashimoto's Thyroiditis), and you don't. That's a very good thing!
__________________ dx pcos 1984, type II diabetes 2001, also hypertension
Met 2000mg since 2001, started Glucophage XR 4/22/04, then switched to Met ER 6/04; also: multi, Vit. C, Vit. E, B12/folic acid combo, fish oil & borage oil combo, garlic capsules, cinnamon, Vitex, calcium with magnesium/zinc, biotin, CoQ10, selenium,iron
Other meds: Verapamil and Altace(for blood pressure)
Started laser hair removal 7/29/03, completed 3/04 (it works!)
UAE for fibroid 3/24/03 and 3/16/04
My BP is always great (114/60 and so on) but my pulse rate was unreasonably high (100 bpm resting) and so I was put on a bp med. Turns out, after I'm taking it a lot of my symptoms go away including swelling, generalized inflammation which worsens pain all over my body, and other things like mood stabilization (less anxiety, panic) and so on.
Also do get the iron checked out- make sure they check your FERRITIN and not just your hematocrit or hemoglobin... my ferritin is chronically low while my other numbers come back great, but yet low ferritin can cause all the same symptoms as generalized anemia.
__________________
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PCOS+IR, Hypothyroidism
Sleep Apnea (cured by tonsillectomy)
30-Something Mommy of 2
Logan Scott born April 9, 2004!
Conor James born Nov 1, 2006.
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your opinion please (very long, sorry) 
