Are Symptoms more important than levels? - Thyroid UK

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Are Symptoms more important than levels?

bessygo profile image
10 Replies

I am a very anxious/nervous person with horrible insomnia. I have posted a few times; I will repeat my labs below. I never feel lethargic or lack energy since I tend to run manic, feel speedy & wired even on 4 hours sleep), don't have weight gain (but hard to lose weight though I don't eat a lot and workout, eat healthy, etc.)

Was mostly concerned about hair loss and hoarse voice which came about when my TSH came back in March at 3.46 up from 1.46 prior. My Endo upped me from 50 mcg Synthroid to 75 mcg.

TSH went from 3.46 to 2.29 and I FINALLY got a Free T3 reading which was 2.5 (range 2.3-4.2) From reading posts here, I fathomed my TSH was still not optimal, my T3 was too low, and that perhaps adding T3 would actually help with insomnia, etc. My Endo was hesitant because of my anxiety, etc.

She offered me either to go up to 100 mcg Synthroid or stay at 75 mcg and ADD 2.5 mcg of T3, which I decided was best since I read that optimal levels of T3 should be on the higher end of the range of 2.3-4.2 and mine were 2.5 (range 2.3-4.2) Now, my levels are:

TSH 1.04

Free T4 1.3

FreeT3 3.1

Total T3 102

I feel more nervous but I don't know if that could be from the T3 since I've only been on it for 3 weeks. But I'm a nervous Nelly to begin with. My Free T4 has always stayed the same through the years at 1.3 - 1.4 (range .8-1.8) When I see her this week, she will ask about my symptoms.

Since my levels are more in line (all my other labs are good except Ferretin is 30 (20-288), should I continue with the T3?

Is it dangerous to the Thyroid gland to NOT be in the optimum range which I am now? Or do anxiety symptoms overrule and indicate that I should go back to just Synthroid? My voice is still hoarse (ENT dr didn't see anything wrong) and I'm going to get an Iron Binding Lab Test (TIBC) to see what's up with my low Ferritin levels since my Iron lab is 121 (45-160 range).

Does it take a while for body to adjust to adding T3 and will my Thyroid gland get worse if my TSH is 2.29 rather than 1.04? Thanks for putting up with my pesky questions!

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bessygo
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10 Replies
mikkymouse profile image
mikkymouse

Hi bessygo

I just joined this site today and sure don’t know all the answers but I will try and answer some of yours. The trouble is when I hit reply I can’t reread your questions and can’t remember them all. Maybe if I tell you a bit about my problems it will help. I am in Synthroid and have been for over fifteen years. My TSH has mostly been in range and when for some reason my dose was upped from 75 to 125 my numbers dropped down to where yours are. My hair got so thin that I finally went to a dr about it. No help there. After my dose was decreased and my number was more around 3. Something it stopped and it’s fine now.

I too have bad insomnia and I’m very agitated most of the time. I never was like this until five years ago when my whole med intolerance thing started up. Unlike you, I’m tired all the time and feeling awful so tomorrow I’m seeing my GP to see if he will prescribe desiccated thyroid. I’m hoping it will cure at least some of my problems.

In short, if you are anything like me, you need a bit higher TSH number. I will reread your post after this and see if I can answer any more of your questions.

greygoose profile image
greygoose in reply to mikkymouse

I very much doubt if either of you need a higher TSH number. The higher the TSH, the more hypo you are. The point of thyroid hormone replacement - levo, T3, NDT - is to bring the TSH down.

However, the TSH itself does not cause symptoms or make you feel anything. It is the FT3 the most important number because T3 is the active hormone which causes symptoms if too high or too low. The OP's T3 is a tad low for someone on thyroid hormone replacement. :)

bessygo profile image
bessygo in reply to mikkymouse

Thanks for your feedback. I thought the range for TSH was on the lower end of the range which is .40 - 4.50. and optimal range is 1.8 - 3.9 and that T3 should be in the upper range of 2 3 - 4.3. My hair situation I'm sure is from the low Ferritin. Maybe I should go down to 50 mcg of Synthroid instead of 75 mcg. I am extremely sensitive to medication. Again, should I listen to my symptoms more than levels? I have Hashimotis and was told Natural Thyriud like Armour is not recommended and that was from my acupuncturist/functional dr who has recommended that route for others. I'm afraid my Endo dr. may not give me the T3 if I tell her my anxiety may have gotten worse since it's so hard to quantify...I am under a lot of stress, have PTSD and it may not be the T3 at all. Maybe lowering my T4 back to 50 mcg from 75 mcg is a better choice. I dont want to alienate this Endo Dr. She is the only one in my area ...I may stop the T3 for a few days ro see how I feel. It is 6 a.m. where I am now..have been up since 2 a.m. and I took a melatonin and vaped some medicinal cannabis and still can't go back to sleep! I take Zoloidem which is Ambien and 1 mg of Ativan every few nights when I am desperate for some sleep. And I've tried all the sleeping hygiene stuff. Doesn't work. I have what they call parapsychological insomnia. I was hoping that tweaking my thyroid meds might help when my levels weren't optimal according to the info I've gleamed from this support group and researching the internet, which my Endo dr isn't fond that I do.

NWA6 profile image
NWA6

Hi bessygo 👋 Dud you endo really only give you 2.5mcg of T3 or is that 25mcg?

bessygo profile image
bessygo in reply to NWA6

2 5 mcg

NWA6 profile image
NWA6 in reply to bessygo

Sorry just to be clear is it 2.5mcg?

dodge1979 profile image
dodge1979

I find it’s the T4 take gives me anxiety

The more I drop it down the better I feel

I was on 200 and off my tits like you

I am now down to 125 and doing a lot better with my anxiety

Of course I added T3

So 100 T4 and 20 T3

Works for me

But we are not all the same

greygoose profile image
greygoose

It has to be a combination of the two. You can't go by symptoms alone - unless you know your body very, very well and have experience of taking T4/T3 and how it affects you - because so many symptoms can either be due to over-medication or under-medication.

At the moment, you are still under-medicated. Your FT3 still isn't quite mid-range. I think 2.5 mcg T3 was rather an unrealistic dose. 5 mcg would have been better. Will she increase the dose?

Is it dangerous to the Thyroid gland to NOT be in the optimum range which I am now?

Your thyroid gland is no-longer in the equation. It has failed to the extent that you now need exogenous hormone to keep you alive. It is the cause of you not being in the optimum range. So, no, it's not dangerous for the thyroid. It's dangerous for you.

Or do anxiety symptoms overrule and indicate that I should go back to just Synthroid?

Anxiety is one of those symptoms that can be either due to under or over-medication.

Does it take a while for body to adjust to adding T3

Yes. But it probably also wants a higher dose.

will my Thyroid gland get worse if my TSH is 2.29 rather than 1.04?

You've got it the wrong way round. TSH doesn't hurt the thyroid. Thyroid Stimulating Hormone: it is rising because your thyroid is becoming less and less able to respond. It doesn't make your thyroid worse. But, a TSH of 2.29 means that your thyroid hormones levels are low. It goes down as your thyroid hormone levels - T4 and T3 - rise. :)

Eliotf profile image
Eliotf

My experience is that my t4 was not converting to t3 even though I am taking a lot of t4. I have been taking 4t since the mid 1990s. I started taking t3 only about 3-4 years ago. My doctor explained that t4 floats around for a week or more to let the other organs and body tissue take what it needs to convert to t3 which is what is really used by the body. T3 burns hot and fast (less than 24 hours). When I first started it I did feel the speedy effects. Now and after a few months I can take my t3 with my t4 in the AM and still go back to sleep. My Endo told me not to take my t3 at night and yes it can be taken at the same time as the t4, then wait an hour before eating. That is the ideal. Literature says half hour. In my opinion if your t4 & ash levels are good, but your t3 levels are still low, then your body may not be converting the t4 to t3. A side note: each organ and each bodily system uses different amounts of t3

jgelliss profile image
jgelliss

Many symptoms can over lap hypo/hyper symptoms . Free T3 FT4 results are very valuable and telling .When raising T4 /T3 , TSH goes down .

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