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What are my options
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??.
This discussion is related to Newly Diagnosed w/Hashimoto's- Synthroid Side-effects??.
Yes.
1 Comments
Went to Family Dr. Friday and asked her to check my vitamin B12 and Ferritin and to try me on the T3 meds. It was a big NO. She doesn't want to treat me for the hypothyroidism since I'm seeing the Endo. I went to her because my blood pressure has been high since I started Synthroid, but since she put me on the 100mg it has gone through the roof. Family dr. did up my Lotrel to 10/20 as of yesterday. Guess it will take some time to work. My BP was 158/107 at 7 am.
She also started me on a free trial of Amatisa for the constipation the Synthroid caused and got me preapproved for it for next month. I asked her to go over my blood work and tell me why she thought the Endo might have gone up on the Synthroid instead of giving me T3 meds and she said I was in normal range and she wouldn't have changed anything, just kept me at 88mg of Synthroid. That doesn't sound right either. :(
She also started me on a free trial of Amatisa for the constipation the Synthroid caused and got me preapproved for it for next month. I asked her to go over my blood work and tell me why she thought the Endo might have gone up on the Synthroid instead of giving me T3 meds and she said I was in normal range and she wouldn't have changed anything, just kept me at 88mg of Synthroid. That doesn't sound right either. :(
Went to the Endo today and she is increasing my Synthroid from 88mg to 100. I got the results back from all the blood work I did 7 days ago. This is it....
Free T3 2.9 ref. range 2.3-4.2
Free T4 1.06 ref. range 0.61-1.50
Vitamin D 45 ref. range 30-100
TSH 4.01 ref. range 0.34-5.60
PTH Intact 53 ref. range 12-88
Magnesium 1.9 ref. range 1.8-2.5
Sodium 141 ref. range 136-144
Potassium 4.3 ref. range 3.6-5.1
Chloride 105 ref. range 101-111
Carbon Dioxide 29 ref. range 22-32
BUN 14 ref. range 8-20
Creatinine 0.9 ref. range 0.6-1.1
Glucose 109 ref. range 74-118
Calcium 9.4 ref. range 8.9-10.3
EGFR Non African American >60
EGRF African American >60
Anion Gap 7 ref. range 3-14
BUN /CREA RATIO 16 ref. range 6-22
The Endo has about as much personality as a door and doesn't really answer question so I have no idea how I'm actually doing.
Free T3 2.9 ref. range 2.3-4.2
Free T4 1.06 ref. range 0.61-1.50
Vitamin D 45 ref. range 30-100
TSH 4.01 ref. range 0.34-5.60
PTH Intact 53 ref. range 12-88
Magnesium 1.9 ref. range 1.8-2.5
Sodium 141 ref. range 136-144
Potassium 4.3 ref. range 3.6-5.1
Chloride 105 ref. range 101-111
Carbon Dioxide 29 ref. range 22-32
BUN 14 ref. range 8-20
Creatinine 0.9 ref. range 0.6-1.1
Glucose 109 ref. range 74-118
Calcium 9.4 ref. range 8.9-10.3
EGFR Non African American >60
EGRF African American >60
Anion Gap 7 ref. range 3-14
BUN /CREA RATIO 16 ref. range 6-22
The Endo has about as much personality as a door and doesn't really answer question so I have no idea how I'm actually doing.
From the sources I have gone through, the best possibilities are the Charlotte area, or High Point, or Wilmington. Would either of those work for you?
Rather than wait until Jan. and just hope that the Endo is a better doctor, if you will tell us what town/city you are willing to travel to, maybe we can come up with a doctor we can recommend as a good thyroid doctor.
2 Comments
I can travel as far as Southern Pines in North Carolina nd Florence in South Carolina. The January 21 appointment with the Endocrinologist in Lumberton, NC, the only thing that bothers me is the fact that I wont have any recent blood work to show him. The Endocrinologist I have been seeing but don't like has ordered blood work but it can't be done till around the 25th of January. 7 days before I'm suppose to go back to see her. I wonder if the hospital would do the blood work earlier so I could have the results for the new Endo, or should I just go see the new one with the results from 3 months ago before she changed my synthroid up to 100mg. Any suggestions?
The Endo that I was suppose to see on Thursday is suddenly going on maternity leave and I cant be seen after waiting 6 months. They rescheduled me for May!!! So I'm stuck with going back to a Dr. I have no faith in in February because I definitely need to get off this 100mg dose of synthroid. My eyes are so dry the sting and burn and crust over in the mornings. My skin is beyond dry and my scalp is red dry and has tiny red bumps. My memory is so bad 5 seconds after I do something I forget it no lie! The strange thing is that last December I had a colonoscopy because I'm over 50. It was good got pics of my appendix it was good. had the TT in March and this December almost to the day of the colonoscopy I had to have emergency appendectomy. Surgeon said it had turn to mush and was leaking. If I had waited 30 more minutes it would have ruptured and I would have been a very sick woman. I've read where other people have had their appendix turn to mush after a TT. I feel like I'm in a night mare!!!! Since the Endo in Lumberton NC is no longer a possibility I reached out to my FB community and have the names of a few doctors in Southern Pines NC and will be contacting their office first thing tomorrow. I also go comments form 2 people to NOT go to the one I'm going to as they have had terrible visits with her also. She is not a likeable person and they felt she did do them any good either.
I find it very strange that the doctor would not even test for Vitamin D, B12 and ferritin. Even if they are the result of being hypothyroid, so what? With test results you can supplement as needed to optimize.
I also find it strange that your Endo raised your T4 dosage by a whopping 12 mcg. Your Free T4 is at 50% of its range, which is the recommended minimum. What needed to be addressed was your Free T3 level at only 32% of its range, when recommended is the upper third of the range, as needed to relieve symptoms.
So I would take another shot at getting your regular doctor to test for Vitamin D, B12 and ferritn. I would also call the Endo and talk about the symptoms you have, the fact that you had a total Thyroidiectomy, and are only on a relatively small dose of medication. That your Free T4 level is adequate, but there was a scientific study that concluded that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate. So you would like to have the Endo re-consider a prescription for 10 mcg of T3 med, needed to raise you Free T3 above the middle of the range.
As a last resort, what is the nearest town/city that you would be willing to travel to, in order to get adequately diagnosed and treated? Also, is insurance acceptance a potential problem or not?
I also find it strange that your Endo raised your T4 dosage by a whopping 12 mcg. Your Free T4 is at 50% of its range, which is the recommended minimum. What needed to be addressed was your Free T3 level at only 32% of its range, when recommended is the upper third of the range, as needed to relieve symptoms.
So I would take another shot at getting your regular doctor to test for Vitamin D, B12 and ferritn. I would also call the Endo and talk about the symptoms you have, the fact that you had a total Thyroidiectomy, and are only on a relatively small dose of medication. That your Free T4 level is adequate, but there was a scientific study that concluded that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate. So you would like to have the Endo re-consider a prescription for 10 mcg of T3 med, needed to raise you Free T3 above the middle of the range.
As a last resort, what is the nearest town/city that you would be willing to travel to, in order to get adequately diagnosed and treated? Also, is insurance acceptance a potential problem or not?
1 Comments
I have BCBS and it is excellent my copay is only $50 so not terrible. The family doctor really does not want to address anything to do with the thyroid issue since I'm seeing an Endo. I have an appointment with another Endo an hr away in January. It take 6 months to see someone here. I have no idea why my Endo is doing any of the things shes' doing. I told her about the symptoms 2 weeks ago and she told me to see my family doctor for the headaches, high blood pressure and constipation. She also told me she never had a patient she prescribed Synthroid to have constipation or have their bp raised. I don't know what to believe because I've been told that it can. it's only been 8 months since the TT so I'm still learning what these numbers mean. Even though the tumor were found on the tyroid 13 years ago I was never treated. Maybe that's why it goiter. I even asked where my numbers would need to be to color my hair finally and she wouldn't answer. I wont be going back to her. I'll see the other Endo in January and hope that he's a better doctor.
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.
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.
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.
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
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.
You also need the Vitamin D, B12 and ferritin tests. Low ferritin is a potential cause for hair loss.
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]
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]
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
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
y other symptoms are EXTEME tiredess to the point i'm scared to drive anymore because I will nod off. Its like I just bottom out w/o warning. My hair has gone from soft to dry and brittle,skin is now dry and itchy,my eyes are dry and burn a lot,blurry vision and I just got new glasss before the surgery. something weird but I swear is new since I got on throid meds. My jaw is locking up on me or poping out of place of something if I yawn or try to bite things like apples OMG the pain of poping it! My legs now have pain that starts around the knee areasits the weirdest thing and maybe has nothing to do with my surgery or the meds just funny it started when I had surgery.
The dermatologist I saw ordered a full thyroid panel but only the tsh levels were sent. The lab told me that if the tsh levels were in the normal range t wouldn't give t4 and t3 levels. The ENT pulled strings to get me into see an Endo on the 27th of this month. She is the one that thinks its from the surgery she called it telogen effluvium. she will see me again on Oct 27th and I'm going to have blood work done a week before she's specifically ordered PTH intact, magnesium serum, basic metabolic panel, TSH
+ free T4, vitamin D,25-hydroxy. If she doesn't get to the bottom of this I will keep the apt with the Endo the family doctor got me for January 21st.
I have tracked all my blood work from September of last year till July of this year which was when the last was done. Can you access my page to view or do you need me to post it all here? As soon as I can get a copy of the blood work this Endo I saw Thursday ordered I'll track it too. The ENT said he was dropping the dose because my TSH numbers were low which indicates high levels of levothyroxine and he changed me from the Levothyroxine to Synthroid because the Levo might not agree with me. The Endo said I wasn't on it long enough to do the blood work yet. It was only changed on the 18th. She left me on it till I go back Oct 27th.
+ free T4, vitamin D,25-hydroxy. If she doesn't get to the bottom of this I will keep the apt with the Endo the family doctor got me for January 21st.
I have tracked all my blood work from September of last year till July of this year which was when the last was done. Can you access my page to view or do you need me to post it all here? As soon as I can get a copy of the blood work this Endo I saw Thursday ordered I'll track it too. The ENT said he was dropping the dose because my TSH numbers were low which indicates high levels of levothyroxine and he changed me from the Levothyroxine to Synthroid because the Levo might not agree with me. The Endo said I wasn't on it long enough to do the blood work yet. It was only changed on the 18th. She left me on it till I go back Oct 27th.
Sorry. I missed that you had a prior thread and posted on your other post. This is what I said.
"Have you been tested for the biologically active thyroid hormones, Free T4 and Free T3 since the TT? If so, please post the test results and reference ranges shown on the lab report.
Also, what thyroid med are you taking as a replacement, and what daily dosage?"
What symptoms are you having besides hair loss? Please post any thyroid related tests were done since your TT, along with reference ranges shown on the lab report.
From our many experiences with the aftermath from a TT where the doctor is not adequately testing and treating the now hypo patient, I'd bet my last dollar that your hair loss is due to either low Free T4 and Free T3, or low ferritin.
Why in the world did the doctor lower your dose from 100 to 88. You had a TT. Even the 100 mcg is not likely enough. You need a good thyroid doctor and you should start looking now. What options do you have for going to a different doctor?
"Have you been tested for the biologically active thyroid hormones, Free T4 and Free T3 since the TT? If so, please post the test results and reference ranges shown on the lab report.
Also, what thyroid med are you taking as a replacement, and what daily dosage?"
What symptoms are you having besides hair loss? Please post any thyroid related tests were done since your TT, along with reference ranges shown on the lab report.
From our many experiences with the aftermath from a TT where the doctor is not adequately testing and treating the now hypo patient, I'd bet my last dollar that your hair loss is due to either low Free T4 and Free T3, or low ferritin.
Why in the world did the doctor lower your dose from 100 to 88. You had a TT. Even the 100 mcg is not likely enough. You need a good thyroid doctor and you should start looking now. What options do you have for going to a different doctor?
Saw the endocrinologist yesterday. She thinks all my symptoms are point towards telogen effluvium. It does sound like what's going on with me. Because the ENT changed the medication from Levothyroxine to Synthroid and the dose back down from 100 to 88 on the 18th, I have to wait for it to get into my system and go back in 6 weeks. She's given me a list of blood work to have done a week fore I go back and she specifically asked for free T3's and 4's and testosterone levels as well as B12 and vitamin D. Hopefully she will know for sure what's going on with me by then.
I brought up the fact that no T3 or T4's have ever been done on me, I swear for an intelligent man he 's clueless. I took all the hair for 12 days to show him how bad it was, he actually made a poor joke. then he felt bad when my daughter and I let him know it was no joking matter to us. He changed me from Levothyroxine to Synthroid and changed the dose from 100mg back down to 88 mg. said if he hadn't found a Endo to see me soon he'd do the T3 and T4 test. Got a call yesterday he's call in a favor and a Endo in his building will see me this coming Thursday the 27th. This is my 3rd day on the synthroid and I'm so tired. guess it will take a month to get into my system. Hair is still coming out like crazy!
Hello,
TSH is not very useful for monitoring thyroid function for many people who are already on Thyroid meds. The tests needed are FT3 and FT4 (free T3 and free T4). You need to adjust your meds based on the results of these 2 tests.
TSH is not very useful for monitoring thyroid function for many people who are already on Thyroid meds. The tests needed are FT3 and FT4 (free T3 and free T4). You need to adjust your meds based on the results of these 2 tests.
I asked about the vitamin d and b 12 and if I needed to be checked to make sure my body will absorb them now I got the clueless stare said that's something for me to discuss with the end and I reminded him that until he finds me one he's all I have. Guess I'll just take them regardless
The ENT changed me from 100 mg levothyroxine to 88 mg of synthroid. We discussed the T3 and T 4 test and why that didn't show up in the full thyroid panel. He is trying to call in favors to get me into an Endo but as far as 5 hrs out in any direction they are all booked till around January. He said we would try the synthroid and a lower dose I go back in 4 weeks and he will do all the blood work. He didn't take me serious about my hair loss even after I produced a glad sandwich bag full that was only 10 days worth, then I ran my fingers through my hair and 10 strands or more came out. He was shocked said that's not Supose to happen and FINALLY took me serious. I told him I don't want to be in the low normal ranges my expectation is to be in the optimal range with no severe side effects. So if I understand this right... If the tsh number is low the meds are high and if tsh number is high meds are low dose right? I tracked my blood work on my page.
Got the results of the blood work and only TSH was given. the lab said it was a generated thing and if my TSH was in the normal range it wouldn't do my T3 and T4. The TSH from Aughust 6th test is 0.56. the one done in June was 1.840. I'm still so new to all this I don't even know if this is good or bad.
also the ENT's office told me the same thing as the family doctor that it is up to 6 months to see an Endo in this area where I live.
tysm for the info, I'm going to see the ENT that took the thyroid out tomorrow and I'm taking a copy of all the blood work the dermatologist did with me. I'm going to ask him about everything you mentioned I'm desperate!!! If he cant do the test for me then he will need to give me good reasons why not.
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You need to insist on testing for Free T4 and Free T3, in order to convince your doctor that you are too low in the ranges for both, as I expect, based on your symptoms. Certainly you do not want to wait for 5 more months to see an Endo, only maybe to find out he is not a good thyroid doctor anyway. If I were you I would get really aggressive with your doctor and say you must be tested for Free T4 and Free T3, since you have hypo symptoms still. Do you think you can put up enough of a squawk to get the doctor to do those tests, along with Vitamin D, B12 and ferritin? If not, what is the nearest medium size town in which we could try to find a good thyroid doctor? How far ar you willing to travel to find a good thyroid doctor?