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Endo confused...I am exhausted
I am a 42 yr old female with endocrine issues since 2009. The first symptoms were exhaustion and rapid weight gain.
It weirdly started happening about 4 - 6 months after I had 2 surgeries for colon bleeding that brought my blood levels down dangerously low for about 6 -9 months previously in late 2008/early 2009. After recoverying from surgery and was able to eat and get around, I started to gain weight rapidly starting in May 2009 (my last surgery was Feb 2009).
I thought it was related to the blood loss...and so went to get tests. They did a CBC and TSH and Cortisol blood test. The anemia and hemacrit was moving up as expected and was now in the low levels of normal. My Iron Sat was very low at 8, but the Dr said that would rise with time.
The Cortisol were low at 5.5 for AM sample and the TSH was 0.6......he said I did not have a thyroid issue
Then a week later I went to an endo and I had more bloodwork that showed the T4 at .5. She sent me a blue card and told me I was fine. I kept getting exhausted and the weight was piling on at about 12lb a month and my muscles in my neck ached terribly.
I went to see another Dr in 9/2009 who said my T4 were too low and my Cortisol was too low. He put me on 100mg of Synthoid and then also Pretnisone (I cannot remember dosage) for three weeks and 5g of D Ribose twice a day. I started to feel a little better, had more energy and was able to successfully start life again. However I lost 5 pounds of the 30 I gained and then stalled (at a 29 BMI no less).
I started feeling lousy agin with exhaustion and weight gain in May 2010 and went back in June 2010. My thyroid was working well with a 0.12 TSH low, T4 0.9, and T3 3.1 but I felt bad and was struggling to lose weight. He check Cortisol and this one was 23.6 for AM so it was high (range of 6.2 - 19). He also did Chol 202 high, HDL 24 low, LDL-P high 1799, HDL-P 27.4 Low, Trig 148 High.
He said I was nearly insulin resistant, told me to change to low carb diet, 20g a day max, and he switched my thyroid medication to Armour 120mg 1X per day.
I felt better in two weeks, lost 16 lbs and then stalled (at a 29 BMI again) but felt a little better.
Moved over the summer and went to a new Dr.right after Christmas. I had started feeling drained and gaining weight again in 11/2010. In Jan 13 2011, the Dr put me on Phetermine fr one month. I ran out of Armour on Feb 6th and waited to see him on the 11th again to get more. I did not feel better nor did I lose any weight even on a strict low carb diet and Phetermine. He took bloodwork at my TSH was 0.004 Low and T4 .87 boarderline low and T3 3.4 normal Cortisol AM 6.2 Low (7 - 19 range). He did not know what to think and referred me to an endo in my area. He did not prescribe anymore thyroid as he wanted the endo to look at it first.
I went to the endo a week later. He did not prescribe any medication to do testing. He tested thyroid TSH 0.12 Low, T4 0.84 boardline low T4 3.4 normal. He also tested cortisol which was at 6.0. He went on feel a lump in my thyroid and then ordered a 24 hr cortisol urine which came out at 15 (range 0 - 50...but he said 15 is pretty low). He tested Prolactin 12.4, Estradol (I do not know the number but he said normal), IGF-1 (he said normal), and ACTH which was the bottom of the normal scale so boarderline. I had a thyroid ultasound and they found 5 lumps...2 larger and 3 smaller. The T4 came back at 0.5 and TSH rose to 1.66 but still both too low.
He is stumped. He said that the TSH is suppressed, the T4 is slightly low, the T3 is producing well, the ACTH is slightly low, the Cortisol is low which may point to a partial Pituitary deficiency as the other hormones from the pituitary were fine. He is thinking of doing a radioactive scan of the thyroid and a ACTH stim test. He said I am very unusual to what I should have. He does not think I have a tumor as I would have other low levels of hormones other than TSH and ACTH.
Meanwhile I am on no medication, I am sleeping a lot, I have gained 10 lbs since 2/11/2011, my blood pressure has gone up to 150/105 and 140/90-95 at my appointments, and I am retaining water. I am avoiding travel for work and working exclusively from home...I am exhausted and my neck aches again. He is trying to help me but can't figure out a central cause.
Has anyone even heard of this or has this happened to someone else?
It weirdly started happening about 4 - 6 months after I had 2 surgeries for colon bleeding that brought my blood levels down dangerously low for about 6 -9 months previously in late 2008/early 2009. After recoverying from surgery and was able to eat and get around, I started to gain weight rapidly starting in May 2009 (my last surgery was Feb 2009).
I thought it was related to the blood loss...and so went to get tests. They did a CBC and TSH and Cortisol blood test. The anemia and hemacrit was moving up as expected and was now in the low levels of normal. My Iron Sat was very low at 8, but the Dr said that would rise with time.
The Cortisol were low at 5.5 for AM sample and the TSH was 0.6......he said I did not have a thyroid issue
Then a week later I went to an endo and I had more bloodwork that showed the T4 at .5. She sent me a blue card and told me I was fine. I kept getting exhausted and the weight was piling on at about 12lb a month and my muscles in my neck ached terribly.
I went to see another Dr in 9/2009 who said my T4 were too low and my Cortisol was too low. He put me on 100mg of Synthoid and then also Pretnisone (I cannot remember dosage) for three weeks and 5g of D Ribose twice a day. I started to feel a little better, had more energy and was able to successfully start life again. However I lost 5 pounds of the 30 I gained and then stalled (at a 29 BMI no less).
I started feeling lousy agin with exhaustion and weight gain in May 2010 and went back in June 2010. My thyroid was working well with a 0.12 TSH low, T4 0.9, and T3 3.1 but I felt bad and was struggling to lose weight. He check Cortisol and this one was 23.6 for AM so it was high (range of 6.2 - 19). He also did Chol 202 high, HDL 24 low, LDL-P high 1799, HDL-P 27.4 Low, Trig 148 High.
He said I was nearly insulin resistant, told me to change to low carb diet, 20g a day max, and he switched my thyroid medication to Armour 120mg 1X per day.
I felt better in two weeks, lost 16 lbs and then stalled (at a 29 BMI again) but felt a little better.
Moved over the summer and went to a new Dr.right after Christmas. I had started feeling drained and gaining weight again in 11/2010. In Jan 13 2011, the Dr put me on Phetermine fr one month. I ran out of Armour on Feb 6th and waited to see him on the 11th again to get more. I did not feel better nor did I lose any weight even on a strict low carb diet and Phetermine. He took bloodwork at my TSH was 0.004 Low and T4 .87 boarderline low and T3 3.4 normal Cortisol AM 6.2 Low (7 - 19 range). He did not know what to think and referred me to an endo in my area. He did not prescribe anymore thyroid as he wanted the endo to look at it first.
I went to the endo a week later. He did not prescribe any medication to do testing. He tested thyroid TSH 0.12 Low, T4 0.84 boardline low T4 3.4 normal. He also tested cortisol which was at 6.0. He went on feel a lump in my thyroid and then ordered a 24 hr cortisol urine which came out at 15 (range 0 - 50...but he said 15 is pretty low). He tested Prolactin 12.4, Estradol (I do not know the number but he said normal), IGF-1 (he said normal), and ACTH which was the bottom of the normal scale so boarderline. I had a thyroid ultasound and they found 5 lumps...2 larger and 3 smaller. The T4 came back at 0.5 and TSH rose to 1.66 but still both too low.
He is stumped. He said that the TSH is suppressed, the T4 is slightly low, the T3 is producing well, the ACTH is slightly low, the Cortisol is low which may point to a partial Pituitary deficiency as the other hormones from the pituitary were fine. He is thinking of doing a radioactive scan of the thyroid and a ACTH stim test. He said I am very unusual to what I should have. He does not think I have a tumor as I would have other low levels of hormones other than TSH and ACTH.
Meanwhile I am on no medication, I am sleeping a lot, I have gained 10 lbs since 2/11/2011, my blood pressure has gone up to 150/105 and 140/90-95 at my appointments, and I am retaining water. I am avoiding travel for work and working exclusively from home...I am exhausted and my neck aches again. He is trying to help me but can't figure out a central cause.
Has anyone even heard of this or has this happened to someone else?
They are called on the lab report
T3 - Triiodothyronine,Free,Serum 3.4 pg/nL [2.0 - 4.4] (I mistyped the first number in the range sorry)
T4 - Thyroxine Free, Direct 0.5 ng/dl [0.80 - 1.80] Low
T3 - Triiodothyronine,Free,Serum 3.4 pg/nL [2.0 - 4.4] (I mistyped the first number in the range sorry)
T4 - Thyroxine Free, Direct 0.5 ng/dl [0.80 - 1.80] Low
Would you please double check the T3 range. Those have to be free T4 and free T3, and I have never seen any lab with a range like that. The closest one I have seen is 3.5 - 7.7 p mol/L
Bump
Also ultrasound showed 5 thyroid nodes
Current thyroid numbers are
TSH 0.16 [0.5 - 5.0] Low
T4 0.5 [0.8 - 1.8] Low
T3 3.4 [0.7 - 4.5] Normal
Thyroid Antibodies None
Adrenal Numbers
Cortisol AM 6.0 [6.0 - 19.0] Borderline/Low
Cortisol 24 Urine 15 [10 - 50] Borderline Low
Putitary
ACTH - Not sure of number...Dr said lowest score on the "normal range"
LH - Normal
Estrogen Normal
IGF -1 Normal
TSH 0.16 [0.5 - 5.0] Low
T4 0.5 [0.8 - 1.8] Low
T3 3.4 [0.7 - 4.5] Normal
Thyroid Antibodies None
Adrenal Numbers
Cortisol AM 6.0 [6.0 - 19.0] Borderline/Low
Cortisol 24 Urine 15 [10 - 50] Borderline Low
Putitary
ACTH - Not sure of number...Dr said lowest score on the "normal range"
LH - Normal
Estrogen Normal
IGF -1 Normal
Welcome to the forum The weight gain, fatigue, sore neck, and high BP are all symptoms of Hypothyroid, I am not up on the other test results you posted, but for members here to get an idea where you are in regards to thyroid, could you post your last thyroid labs and the ranges provided with them,which would be Free T4 Free T3 you can include Tsh also but the T3 and T4 and ranges are important. Then members can comment. Good Luck FTB4
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