Today I saw the Endocrinologist

[Sammyg61986]

Hey all! Today I went to see the Endocrinologist and before I even saw him they drew 4 vials of blood work. This office has their own lab right there and some things I will know the results of today. I am being tested for ANA, Prolactin IGF1, TPO, TFT’s & RF. My previous blood tests were TgAb 214 (reference rang 0-115), Sed Rate for inflammation 22 (reference range 0-20), He also wants me to do a test for Cushing disease next Tuesday to rule everything out. My question is, do these tests seem right? He didn’t put me on any medication although I have a notebook page worth of symptoms? I’m so anxious to find out what is going on, I feel like I am dying. My hair is falling out a lot now, and my eyebrows are jacked up too. This is just awful. He said my Previous TFT’s test everything was within range but barely. This sound familiar to anyone?

[gimel]

All I can tell is that your TSH level is not enough to stimulate any natural thyroid production that could account for your levels, and your 25 mcg dose of Levo is not enough to account for your FT4 and FT3 levels.   Your ultrasound did not show nodules.  You say your gland is swollen and making it hard to swallow sometimes.  
Note the following:  "Subacute thyroiditis: Inflammation of the thyroid that causes the gland to "leak" excess hormones, resulting in temporary hyperthyroidism that generally lasts a few weeks but may persist for months."

At any rate I think you need to review with the Endo that you were diagnosed with autoimmune antibodies.  Those attack the thyroid gland and can cause inflammation and or nodules which can leak hormone faster than normal and could account for you having those FT4 and FT3 levels with suppressed TSH and only taking 25 mcg of T4.  And then ask him what he suggests should be done for you.  

Following is a link to some good information about thyroiditis, diagnosis and treatment that will be useful in discussion with the doctor.

https://my.clevelandclinic.org/health/diseases/15455-thyroiditis/management-and-treatment

[gimel]

As I said, 25 mcg of T4 would do nothing for you.  It would not account for the levels of FT4 and FT3 and relatively low TSH.  Just to make sure of the dosage, what brand is it and what color is the pill?  If you need further tests for cortisol, are you willing to spend about $145 on a diurnal saliva cortisol test kit that tests free cortisol at 4 times of the day?

[Sammyg61986]

The dosage is Levothyroxine 0.025mg (25mcg), manufactured by Lannett. Pill is small round pink.
Side one: 5|3
Side two: JSP
Currently on a tight budget, but I would do the cortisol testing when I can.

[Sammyg61986]

So if it’s not a nodule, what could it be?

[gimel]

There is no way that 25 mcg of T4 should result in those test results.   Since you were previously found to be high in Thyroglobulin antibodies, indicative of Hashimoto's thyroiditis, I wonder if perhaps your thyroid gland has developed nodules that are leaking hormone faster than normal.   Perhaps it would be good to do an ultrasound test of the gland to determine its condition.  

You also need to supplement with iron, as previously discussed.  

What symptoms are you having now?

[Sammyg61986]

Gimel, you have been a lifesaver for me in all of this... thank you so so much!

I was kind of thinking the same thing, it’s the lowest dose of Synthroid. I recently had an ultrasound of thyroid over the summer and it was still in normal range even though it was on the bigger side. I didn’t have any nodules. I can feel its bigger because I have trouble swallowing, and choked on water the other day for no reason. This happens all the time and I always feel like I’m going to choke.

I started Keto, and I’ve managed to lose 10 pounds. But that has taken just about a month. The weight really doesn’t want to come off. Other symtoms include anxiety/ depression, brain fog, heart rate races and sometimes drops from in the low 100’s to the 60’s. My bones crack all of the time, I supplement with vitamin D drops. I struggle to get out of bed every morning because my body just hurts and I literally could sleep for 13 hours straight without even waking up. I also can’t keep myself awake if I’m really tired, I’ll just pass out into a deep sleep without warning anywhere. Still have edema even though I am on a water pill for that (HCTZ 12.5mg). Constipation/diarrhea randomly so IBS? Also, the water pill doesn’t make me use the bathroom like it should, it’s weird. I’ve been trying to drink seltzer water and more of it. My eyes get so itchy I want to gauge them out of my face, even though I use allergy drops, my mouth also gets really dry too. Slight headache almost always.

[gimel]

SammyG, there is no way that your dosage of 25 mcg of T4 is adequate, based on your prior FT4 test result.  The reaction you report from increasing your T3 med makes me wonder if it could be related to low ferritin. Have you been supplementing with VitronC or another iron supplement?    

[Sammyg61986]

I am not sure why I didn’t see this before, I have many been supplementing with Oron, although i will check my multivitamin that I have been taking. I had blood work drawn on Tuesday and these are the numbers
Free T3- ref range 230-420..... I am 340
Free T4- ref range .80-1.80.....I am 1.46
TSH- ref range .350-5.500.... I was .052
I was out of range for TSH and so my doctor wants me to continue Synthroid .025mcg..but only 5 days per week (skipping Sunday and Wednesday)... I’m not sure how I feel about that, I feel like I’m constantly up and down. Does this sound right?

[Sammyg61986]

*I have not been supplementing with iron.

[PurpleWolf912]

Gimel, Sammy; I’ve read all the info on this thread and writing holding back my tears!! I have the exact symptoms..(and fear of bridges). I have Lupus. SLE to be exact. I was diagnosed @20 years ago. Over the last 3 years I have been diagnosed with Hashimotos and thyroiditis. My Endo has me on Tirosint 150mcg. My body is attacking my thyroid and nothing seems to work to get my fatigue under control. At my wits end!!! Any Suggestions??? I didn’t have thyroid issues until I was placed on BENLYSTA infusions. Now searching for answers to find any correlation. My body cries when I move!! Will post my recent labs.

[Sammyg61986]

PurpleWolf, I am not familiar with those types of medications. Have you had your Vitamin D checked? I had a deficiency and since I have started taking about 5000IU’s per day, the fatigue has improved a bit. The only problem I have now, is that I have to drag myself out of bed in the morning. How did the doctors figure out you have Lupus? Blood test? I white knuckle bridges, in fact I will go 100 miles out of my way to avoid one. I need to get over the fear. I was put on Liothyronine (T3) to help with my metabolism and all it did was cause me extreme anxiety, chest pains, heighten my fears and even made me angry for no reason. I recently stopped taking it. I now take Ashwaganda Root along with my Synthroid 25mcg (first thing in the am)  and Hydrochlorathiazide (water pill) along with anxiety medication (benzodiazepines). I feel like it’s all about finding exactly what works for you. Also, dedicate yourself 9-10 hours of sleeping time so that your body can recover. I literally slept for 12 hours the other night. (10pm-10am) I didn’t wake up once during that time. What blood work have you had done? And what were the lab reference ranges?

[PurpleWolf912]

My current labs:  8-1-18;
T4 free direct “0.56”, TSH “22.25” SedRate “72”.  
Currently taking 150mcg of levothyroxine (Tirosint).

[PurpleWolf912]

Ref ranges TSH 0.450-4.500ulU/ml. FreeT4 0.580-1.64ng/dl  sed rate 0-20mm/hr.

[PurpleWolf912]

Lupus Diagnosed with lab work.. positive ANA, rheumatoid factors and sed rate also some additional labs throughout the early years of diagnoses.

[PurpleWolf912]

Thank you!! It helps in simply knowing your not alone!! My med list reads like big pharma top 50!! I was doing fair until thyroid issues began. Sooooo much to understand and separate yet the goiter is growing and now being advised to remove. Terribly afraid I won’t survive because of my other health issues!

[gimel]

PurpleWolf, to get the best response to your questions, I suggest that you start your own thread by clicking on the Ask A Question button at the top of the page and then copy and past your info there.  

[gimel]

You have to get your Vitamin D up to at least 50.  You need to get your ferritin up to at least 100.  Are you supplementing for that?   Most important is that you need to get your med dosage increased.  Your Free T4 of 1.08 is only 22% of its range.  It needs to be at lest mid-range.   If you are still on 25 mcg of T4 that is much too low.  I'd say you need to request an increase of 50 mcg of T4 med for now.  Also you need to request an increase of 10 mcg of T3.  Then ask for a re-test in 5-6 weeks.   And make sure you don't take your thyroid med before the blood draw.  Note how much difference there was in your FT4 result this time.   I am surprised your FT3 was not lower, but I expect that your body is converting extra T4 to T3 in an effort to maintain thyroid function as best possible.  

If you want some info to read about this and also give to your doctor to persuade him to increase your meds, click on my name and then scroll down and read the one page overview of a paper on Diagnosis and Treatment of Hypothyroidism: A  Patient's Perspective.  If your doctor is one that believes treatment should be determined by your TSH level, then you can try to convince him otherwise with the info in the paper.  If that doesn't work then you will need to find a good thyroid doctor that will treat clinically, for symptoms) rather than based on TSH.

[Sammyg61986]

Hey all, So I went for my follow-up appt with the endocrinologist yesterday and he took blood work. Vitamin D - 36.84 (ref range 30-100), TSH 0.888 (ref range 0.370-4.0), Free T4 1.08 (ref range 0.89-1.76), Free T3 3.32 (ref range 2.30-4.20).
I’m still having incredible brain fog, high heart rate, chronic fatigue, joint pain, lethargy, still unable to lose weight, depression, and I also noticed my anxiety has been really high. I’m afraid to go over bridges, it’s really weird. I started on vitamin D3 drops in MCT oil and Raw One (multivitamin with probiotic for women). I understand that my vitamin D still needs to come up and I am taking 5000IU/day. Any thoughts as to what I can do next?

[Sammyg61986]

I hope so. I can’t take the Lasix they were going to put me on because I have a sulfa allergy and the pharmacist said it’s the same chemical structure. I hope they can find me some relief. Any suggestions on natural diuretics?

[gimel]

Your doctor seems to be doing the right things for you.   Just stick with the program and keep working to get all your test results optimal.   Don't forget to delay your morning dose of thyroid med until after the blood draw for tests.  

[Sammyg61986]

Thank you Gimel! My Endo started me on Lasix 20 mg (1 every day) for the water I have been retaining, does this sound right? I will be starting it today and I’m not huge into taking pills. But, with everything going on, I’ve never been so willing to actually take something as long as it helps and doesn’t hurt. Endo said that water retention wouldn’t be caused by synthroid or generic, but I feel differently. I also have had the water retention for the last 10 years, it’s just worse now.

[gimel]

The test that would be affected are Free T4 and Free T3.   If those are in the basic metabolic panel then it would be best to wait until tomorrow for tests and delay your morning dose of thyroid med.  

[Sammyg61986]

I am going to get blood work for Lyme, basic metabolic panel, TgAb, sed rate, EST and I think TPO.  Is it ok if I took my synthroid and T3 this am? Or would that effect these tests? Not sure if TSH is on this blood work

[Sammyg61986]

I am going to be getting blood work today... my question is, I took my thyroid medication this am. If I get blood work done at 4, should it be affected or no?

[gimel]

Your Reverse T3 of 18 is just above mid-range, which is okay.   The ratio of your Free T3 to Reverse T3 is recommended to be at least 1.8, and in some sources, it says 2.0.    So, according to those ratios, your Free T3 is borderline.  Plus as I suggested I think your last test results may be artificially high due to taking your med before the test.   So you need to get those tested again when you can, and delay your morning thyroid med until after the blood draw.  You also need to get your Vitamin D up to at least 50 and your ferritin to at least 100.   Even after getting everything optimized, it may take some time for your body to heal and achieve full relief from symptoms.  

[Sammyg61986]

Can anyone help with my question above? Thank you!

[Sammyg61986]

My reverse T3 results are 18 (reference range of 8-25).
I have no idea where this number should be, but I’m guessing the lower part of the reference range? Also my resting heart rate went up to 193 for an hour and 15 minutes in thurday. That was very scary to see, seeing as how my heart rate for my age should not go over 188. I started walking every other day on the treadmill for 30 minutes on the days I feel good. I’m hoping a little walking will maybe help in the long run with my fitness, heart, weight and fatigue.

[gimel]

No, in fact there are people who take all their thyroid med, including T3 med, in the morning.  Some take it all in the evening.  Whatever works best for you and your schedule is what you should do.  The doctor's  suggestion is just that, a suggestion, not a requirement based on any evidence.  

[gimel]

I take my Cytomel in the morning and early afternoon and all other supplements at night.  

[Sammyg61986]

Dr told me to take Cytomel every 12 hours..... do you notice a difference in am and afternoon instead?

[gimel]

I am still of the opinion that your FT4 and FT3 results were influenced by taking the med right before the blood draw, so be sure to delay until after the blood draw next time.  Your Vitamin D is way too low so taking the 4000 Iu is directionally correct.  Your B12 was adequate.  You also need to take an iron supplement to raise your ferritin to at least 100.   Even though your serum iron was okay, ferritin is a precursor to serum iron levels so the low ferritin is inadequate.  Ferritin is very important for its effect on conversion of T4 to T3 and also for good hair growth.   The best supplement I have found for iron is Vitron C, which contains 65 mg of iron in each pill along with Vitamin C to help with absorption and avoid stomach distress.  

When you you get new results please post them along with reference ranges and we will help interpret and advise further.  

[Sammyg61986]

I will post an update when I get the reverse T3 results. Thank you for your help. Any suggestions as to when I should take supplements? I take synthroid in the morning Cytomel a few hours later and the Cytomel at night

[Sammyg61986]

So I went last week and this week for blood work. I’ve been requesting everything and I’m not afraid to anymore. Today when I spoke to the office I told them of the edema I still have everywhere and about the weakness all though my muscles and joints. Yesterday I randomly slept for 3 & 1/2 hours in the afternoon. I’m fighting this and giving it all I have to make sure there is nothing else wrong. Somedays I have so much pain that I lay in bed and cry and I just feel hopeless, like I will never get the answers to all of this or relief from the pain. I requested a lymes disease test and it turns out he never did the test for RA after he said he would. Anyway, this is my lab work within the last two weeks, I’m just waiting for the Reverse T3 to come back. I’ll also add that I took my dose of levothyroxine .025mcg and Cytomel 5mcg a few hours before this test was done. I also take a gummy multivitamin in the afternoon. My dr just wants me to add in 4000IU/day of vitamin D.  (Gimel, you and I previously had discussed holding the synthroid and Cytomel in the am until after the Blood draw, to get a more accurate reading on thyroid levels, I will be doing that next month) I will also add that the first time he tested my creatine it was 0.74 (ref range 0.80-1.50) I requested I also be retested for the creatine and for the Sed Rate (inflammation) that was high in previous tests. Here is this weeks and last weeks blood work.
TSH: 0.840 (ref range 0.370-4.0)
Free T4: 1.45 (ref range 0.89-1.76)
Free T3: 3.31 (ref range 2.30-4.20)
Iron level: 66 (ref range 37-170)
Vit B12: 780 (ref range 211-911)
Vit D: 28.2 (ref range 30-100)LOW
Ferritin: 48 (ref range 10-120)
Thank you for your help, you are like my angels through all of this!

[gimel]

Be sure to test for Free T4 Free T3 along with the Reverse T3 and the others.  the doctor is incorrect about taking the thyroid med before the blood draw.   As mentioned even the ATA/AACE say to delay med until after the blood draw, in order to avoid a false high result.  You get a much more representative test by delaying the morning med dose.   To avoid the issue with your doctor  I would just delay taking the morning dose and say nothing unless asked about it.

[PurpleWolf912]

Have you gotten a response from your labs? Curious because it may be something  autoimmune.

[Sammyg61986]

The labs I have done so far are above....I was diagnosed with Hashimoto’s which is auto-immune about 2 months ago. The dr told me today it could be something else contributing

[Sammyg61986]

So the Endo just called, I requested the Vit D, Ferritin and B12 along with the reverse T3, he is writing me a lab slip for that to do next week. I told him about the study about not taking meds prior to test and he said it’s ok if I rake them, because that would be my level during the day anyway

[gimel]

Yes, according to a recent, excellent scientific study, "Hypothyroid
symptom relief was associated with both a T4 dose giving
TSH-suppression below the lower reference limit and FT3 elevated
further into the upper half of its reference range. "  If you want a link to the study to give the doctor I will post it by PM.