What are my options

[janj63]

In 2000 I found out I had a multi nodular thyroid and was told the results would be sent to my family doctor and I would be treated for hypothyroidism. I was never treated, only had TSH levels checked (when I reminded them). I complained of choking, bruising, hair loss, weight gain, and extreme tiredness, reminded them of the hypothyroidism and asked if it should be checked. I was dismissed. I was choking so bad. I made myself an appointment with an ENT and in March 2015,was told by the ENT, that the  multi nodular thyroid was now goiter, and  too bad to be treated, had to come out, and he removed it 3 days later. in April I was put on 88mg of levothyroxine.  Did blood work in May (TSH levels only) and put on 100mg levothyroxine. before that my hair was coming out a little bit but after the month of May on the 100 mg my hair was coming out in wads and I was so tired. The ENT said he was going to let my family doctor monitor my medication and so he more or less washed his hands of me. The Family doctor did blood work in June (TSH levels only) and kept me on 100mg levothyroxine. When I wash my hair I get a glad sandwich bag full( I saved it as proof) its it's insane how much its coming out and the dr. is giving me b12 shots for energy but I'm still so tired. Now here it is August, 4 months on 100 mg levothyroxine and my scalp is red, irritated and itches like crazy. I took the hair to the family doctor  told her I thought it was the medication. I wanted  a full panel not just TSH but T3 and T4 checked, and finally she saids she thinks I should see a Endocrinologist. Let that doctor do T3 and T4 test, but she couldn't get me an appointment  till January of NEXT year!!!!  Mean while I went to a dermatologist. he did do a full thyroid panel CBC, anemia, alopecia the works and told me today its not dermatological its something to do with my hypothyroidism and medication and I need to see the Endocrinologist as soon as possible because I have sever thinning hair and will have bald spots by then.  Had to inform him today that for the last 3 days I now have what looks and feels like body acne or risens all over. Just another sign that something's not right. He's put me on a topical steroid for the scalp irritation and said if I can see the Endo and get on the right medication or dose then the hair loss can be reversed the bumps will go away and so will the tiredness. ( I so hope he's right). I am so depressed and can't help but ask why the ENT doctor didn't refer me to a Endo. Why he thought a nurse practitioner(that's all we have in this small town)  could monitor this!!!! So 5 months after the thyroidectomy they refer me and its going to take 5 more months to get seen. I can't wait that long,what can I do???


This discussion is related to Newly Diagnosed w/Hashimoto's- Synthroid Side-effects??.

[gimel]

Your problem is not that you need more T4 med.  The problem is that your Free T3 is too low, because your body is not adequately converting the T4 to T3.  So what you really need is to get a source of T3 in your med.  I would ask your family doctor to let you try 5 mcg of T3 med daily for a few weeks and then increase to 10 mcg.  Any T3 med dose should be split in half for the morning and early afternoon.  

Also I would try to get your family doctor to test for Vitamin D, B12 and ferritin.  All are important for a hypo patient.  D should be about 55-60, B12 in the upper end of its range, and ferritin should be about 70  minimum.    

[gimel]

You should request those additional ones, and if they resist, explain that Free T3 levels correlate best with hypo symptoms and that B12 is very important to prevent fatigue, and that ferritin is important for metabolizing thyroid hormone.  Don't take no for an answer.  All are important.

[janj63]

I have the paper  work to do lab work on October 22 and I'll see her on the 27th. She's ordered  PTH intact, magnesium serum, basic metabolic panel, TSH + free T 4, vitamin D, and 25-hydroxy. Free T 3 wasn't listed nor was B12 or ferritin

[gimel]

Where are the promised tests for Free T4 and Free T3?  They run all those tests and would not test the biologically active  thyroid hormones?  That is terrible.  When you are taking thyroid med, the TSH test is useless.  In fact it is worse than that because they reduced your meds based on the TSH test.  If it were me I would light a fire under that doctor and insist on the Free T4 and Free T3 tests that were promised.  You need to know those to prove to your doctor that you are too low in the ranges for both, which causes hypo symptoms, including hair loss.

You also need the Vitamin D, B12 and ferritin tests.  Low ferritin is a potential cause for hair loss.

[janj63]

Sorry still trying to get the hang of posting, forgot to put reference ranges

This is all the blood work that's been done on me since I had the total Thyroidectomy....


May 7,2015 Blood Work

TSH 3.54         Reference Range [0.34-5.60]

July 1, 2015 Blood Work

TSH 1.840     Reference Range [0.50-4.500]

August 6,2015

TSH 0.56       Reference Range [0.34-5.60]
WBC 8.9       Reference Range [4.0-11.0]
RBC 5.29      Reference Range [3.69-4.87]
Hemoglobin 15.8   Reference Range [1.4-14.4]
Hematocrit 47.0     Reference Range [33.0-41.0]
MCV 88.9     Reference Range [79.0-95.0]
MCH 29.8     Reference Range [27.0-33.0]
MCHC 33.6   Reference Range [34.0-36.0]
RDW 13.0     Reference Range [11.9-15.1]
Platelet Count 299  Reference Range 165-353]
MPV 9.8        Reference Range [7.5-10.7]
ANA Direct negative    Reference Range [Negative]
Testosterone, Serum 13    Reference Range [3-41]
Free Testosterone 3.4      Reference Range [0.0-4.2]
DHEA Sulfate 96.1      Reference Range [41.2-243.7]

[janj63]

This is all the blood work that's been done on me since I had the total Thyroidectomy....


May 7,2015 Blood Work

TSH 3.54

July 1, 2015 Blood Work

TSH 1.840

August 6,2015

TSH 0.56
WBC 8.9
RBC 5.29
Hemoglobin 15.8
Hematocrit 47.0
MCV 88.9
MCH 29.8
MCHC 33.6
RDW 13.0
Platelet Count 299
MPV 9.8
ANA Direct negative
Testosterone, Serum 13
Free Testosterone 3.4
DHEA Sulfate 96.1