Still unwell despite good thyroid levels.

[Evej13]

Hi all,

My thyroid levels are:

TSH: 0.01 (.27 - 4.2 mU/L)

FT4: 15.3 (11.0 - 22.0 pmol/L)

FT3: 6.3 (3.9 to 6.7 pmol/L)

I have been hypothyroid for many years and was recently been diagnosed with central hypothyroidism.

B12 is >1476 pmol/L

D is 123 nmol/L

Ferritin is 81 (20 to 120 ug/L)

Iron: 12 (10 to 29 umol/L)

Iron Binding Capacity: 47 (45 to 72 umol/L)

Iron Saturation: 26% (14 to 51)

I can't get anyone to test folate. I am supplementing B12 and D.

I still feel very tired, and have dry gritty eyes, loud tinnitus, nausea, balance issues and dizziness, scapula pain.

My iron is low in reference, yet my ferritin seems ok. Could low iron cause these symptoms?

What about B12?

Thanks!

[SlowDragon Administrator]

How much levothyroxine are you currently taking

Or are you taking T3 as well ....or NDT

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

If/when also on T3, or NDT make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

What vitamin supplements are you currently taking

Are you on strictly gluten free diet or dairy free diet

[Evej13 in reply to SlowDragon]

Thanks for your reply SlowDragon. I am taking 120mg NDT. Thyroid test was done at 7am. Last dose was 8pm the night before.

I was taking 1000mcg Vit B12 / day, and 1000mcg D + K2.

I have tried gluten free and dairy free - neither made any difference.

[HashiFedUp in reply to Evej13]

Your t3 might be a little bit too high. T3 and T4 should be about ideally 75% up through the range so you may be slightly over medicated on t3. Can make you feel unwell. Also if you’re on levo etc try NDT. Agrees with me much better than the systematic stuff from the NHS.

[Evej13 in reply to HashiFedUp]

Thanks HashiFedUp. I am on NDT (120mg). I have thought of reducing NDT just a little and adding some LT4.

[JaclynB]

You just described exactly how I feel when my TSH gets below 1.00. I feel best when I keep myTSH between 2.50-3.00

[Evej13 in reply to JaclynB]

Hi JaclynB. TSH doesn't really matter. My TSH will not rise no matter what my Frees are. I'm central hypothyroid.

[JaclynB in reply to Evej13]

Oh ok. Well in that case. If my Free T3 goes above 3.0 I feel exact same symptoms. And if my free T4 goes above 1.00 I’m the same. I lived for 15 years with a hyper functioning nodule that kept me in a hyper state. I remember when I had too much thyroid flooding my system one of my biggest symptoms was my ears would ring sooo bad. My muscles ended up getting so weak I couldn’t climb stairs or lift my arms to brush my hair. I couldn’t drive becaUse of the dizziness and couldn’t eat because of the nausea. After I had my thyroid killed by an ablation I now am forever hypothyroid and depend on thyroid replacement. I used to think that taking more meds and getting my frees up higher would make me feel better but as always the dreaded symptoms of hyper would come back. I have been living this hypo roller coaster for almost 10 years now. If I take 100 mcg a day I’m running to the bathroom 10 times a day I get sooo weak and ache like a bad case of flu. I then lower my dose to 88 mcg and all clears up. I also know that my dose is too much for me if I start noticing the sound of people chewing. Always accurate for me. The reason your ears ring when flooded with thyroid is because are nerves get overstimulated when too much thyroid is in the blood and your inner ear nerves respond by malfunctioning and causing a ringing sound and dizziness.

[Evej13 in reply to JaclynB]

Thanks JaclynB. Those do sound similar to my symptoms. Sometimes I feel like I am bouncing between hypo and hyper symptoms and can't find optimal. When you say "free T3 goes above 3.0" and "free T4 goes above 1.00", what are your reference ranges?

[JaclynB in reply to Evej13]

Free T3 (2.6-4.8) Free T4 (0.8-1.8) Those are the lab ranges. I have learned over the years that everyone has their own range they feel best at regardless of the ranges. I know that most people would say that if my free t3 gets above 3.00 isn’t hyper according to the ranges but to my body it is. I tried Armour thyroid one time and my symptoms escalated so bad because natural desiccated thyroid has 10 times more t3 than humans naturally need. So because of that when I took it it made me so bedridden I thought I would die. Instant hyperthyroid symptoms for me. Some do well on it but others don’t. And yes I get both hyper and hypo symptoms too. Sometimes it’s hard for me to tell except when my ears ring and I get dizzy then I know I’m overmedicated.

[Evej13 in reply to JaclynB]

At FT3 of 3.0 and FT4 of 1 you're at 20% of reference range for FT4 and 18.2% for T3. At levels that low, I would be incredibly underdosed and have a lot of hypo symptoms. Just goes to show how individual we all are.

I would like to know whether my iron level is low enough to be causing problems.

[JaclynB in reply to Evej13]

Your iron could be contributing as well. I always have low iron. That’s probably why I can’t handle getting my levels up. What symptoms did you have when you are hypo?