*New here* My T3 never budges; significant symptoms persist

[TacoTico]

Greetings All!

I was diagnosed with hypothyroidism in April 2016...in reality I think I had problems way before that. I was diagnosed with lupus in 2009, but so many of my symptoms have improved since being treated for hypothyroidism with...you guessed it -levothyroxine that I wonder how much of this is actually lupus, as the doc just threw the diagnosis on me after a hospital stay because "sjogren's doesn't do this and we wouldn't treat it any differently anyway. (sjogren's syndrome - my first diagnosis).

I still have many lingering symptoms that would improve for a couple-few weeks with each dose increase, then I'd go back to feeling like crap. I am better with the levo than I was without it, no doubt, but I wonder if I am being treated adequately.

I am currently on 113 mcg levo. I have tried NDT (NatureThroid and WP Thyroid) and felt MUCH worse. I understand that is an indication that I may have iron or other mineral/vitamin deficiencies.

I went back on levo last year after an unsuccessful couple of weeks on NDT (I felt absolutely terrible) and have been on it since with hardly any increase (0.5 to .1 to .113)

The reason I am here today, is because last week I asked my doc about a trial of cytomel since my symptoms persist and review of my labs indicate that my T3 never budges, even if my T4 goes up some. Mentioned reverse T3 to doc - she didn't know what it was (not surprising) and didn't order it. I have tested negative for antibodies.

My latest results:

TSH 0.19 (0.4 - 4.5)

FT4 1.5 (0.8 - 1.8)

FT3 2.4 (2.3 - 4.2)

Lab results flagged my TSH as being too low. FT4 is the highest it's ever been (usually ranges from 1-1.2) and FT3 was steady at 2.9 forever; this is the first time I've seen it that low.

Disclaimer - I did trial 150 mcg of Levo for about a week prior to lab draw because I felt so so bad (doc knows this) and felt a boost for a few days (as per usual), including less bloat, less constipation, less brain fog, more energy...but after about a week that all changed and I was feeling unwell/worse than before so I backed off, took a couple days off entirely and then dropped back down to my prescribed dose. The bloat/consipation returned with a vengeance. Looking at my labs I assume I boosted my T4 up too high with the levo trial, and my T3 did not respond along with it. Perhaps that's why I felt bad after a few days and my TSH is so low now?

I fear that with my TSH being so low she will be hesitant to give me a trial of T3 (she wasn't familiar with that either; thought it was for hyPER); but looked it up while I was there and said "oh, this hits straight to T3." She said she would let me try cytomel if my T3 came back low, which it did, but since my TSH is so low I fear she won't be willing to do that now. I haven't heard from her yet. I just got my lab result notice via email direct from the lab today.

My symptoms: Hair dull/severely thinned out, breaks/snaps, only grows so long, "scales" form on scalp, texture has changed - in a nutshell my hair is like a brillo pad. Use to be super thick and full (I know..you've all heard this before...waaaaa) Some spots won't grow at all and temple region looks just about bald. I have been dependent on wigs for about 6 years now, as nothing improved my hair condition. I have thin/sparse (none in some spots) hair on my body. I don't need to shave anymore.

I am always cold - blue fingers/toes with slight temperature change or anything that makes me nervous (raynaud's phenomenon)

My muscles hurt all the time; if someone touches my arms or legs it feels like they are poking me with a knife!

Major fatigue. Legs feel like they have lead in them

If I don't keep my calories low I can gain 5 pounds in a day

MASSIVE brain fog/terrible memory/attention span is awful/can't find my words/some days I feel like I have a speech impediment!

Libido - absolutely non existant - zilch. Have been single for 5 years after my guy dumped me I figured it was best to stay that way. This makes me very sad; I'm sure some of you can relate. I guess I am just an asexual now.

Treatment resistant depression. I have NO sense of well-being and have been emotionally flatlined for years. The only improvement I saw in that was when I first started taking levo. I am unable to get excited about anything and have basically withdrawn from participating in life, except when I know I "have to".

I am so sorry for the length. Please share your thoughts with me. Am I on the right track, asking for cytomel?

Vit D is 59 (20-100) - I am working on getting that number up. She recently tested my B12 and it is 427 (200-1100).

She wants to send me to an endo...but if that endo isn't going to do much more for me then why spend the money and waste my time? My doc is awesome, really...and I know she is trying to do what she was taught, but I'm not sure how much further I will get with her if she won't trial me on at least a small dose of cyto to see what happens. Anyway...

[TacoTico]

I'm not sure either. Info I have been able to find about struggling with NDT is that I may be iron or iodine (or something else) deficient, and that is why I reacted badly. I do better with levo, but obviously it's not enough because my t3 isn't moving at all! Thanks for your response!

[Mamapea1 in reply to TacoTico]

Hi! It won't be iodine, as T4 has 4 molecules of iodine, T3, has 3... I would get a comprehensive blood test from one of the labs suggested on this forum, which will show thyroid and all vitamins.

Do you know your folate level? because my B12 was 'in range', but folate was low, and it turned out I had a serious B12 deficiency! 😳 also are you taking magnesium and Vit K2-MK7 with the VitD?

If you have constipation magnesium citrate is brilliant, I take viridian powder, but there's lots of types to choose from. I had/have similar problems, and whilst I don't understand why you felt worse on NDT, I do think you would benefit from T3.

I'm sure your Dr has good intentions, but she clearly knows jack about thyroid problems, so isn't going to be much use to you, and trying to tear yourself between being adequately medicated and regaining your health, and remaining a loyal patient to a pleasant GP is going to create a dilemma!

I suggest you learn everything you can by trawling this forum, and then you will know for sure what is right for you. I spent 25 years following advice from GPs and assorted specialists and became very ill😔

I am only now showing improvement on T3, which I have had to source myself. You may only need to add a small amount to your thyroxine, and whilst it's better to do so with support from your GP, they are ruled by the TSH, and IMO it's not worth prolonging the agony and making yourself ill. Lots of members to help you on here👍 xx

[Mamapea1 in reply to Mamapea1]

PS ~ buy that mag citrate today ~ it's amazing how much better it feels to get rid of the awful constipation! 😊 xx

[TacoTico in reply to Mamapea1]

When I took NDT the fog got worse, I was headachy and sluggish. I believe I got up to 1 1/2 grains before going back to synthroid. I just remember feeling more unwell than usual on it, like a dark cloud was hanging over my head. Thyroid labs are in original post; except for reverse T3 I've had the others. No Hashimoto antibodies either.

I'm on my third doc, and while thyroid is not her highest expertise she's been more open than the others; I am always on the lookout for a new doc, but have yet to find one that has the knowledge the boards have. For the moment, this is what I have to work with. She has mentioned the possibility of adrenal fatigue as well.

I might go with a functional medicine doc eventually although that will be entirely out of pocket and very expensive (I live in the US; not sure that I was paying close attention when I signed up for a health board in the UK, but you all have been very helpful).

Thanks for the mag citrate tip, I will grab some of that today.

[Judithdalston]

Sorry but i don't understand the ranges of FT4, FT3 you have posted TacoTico, what are the units for eg I am used to FT4 being in range (12-22 pmol/L)

[TacoTico in reply to Judithdalston]

Sorry about that - ng/ml

[SilverAvocado]

TacoTico, I agree with others that you are not converting T3. T3 is the active hormone, needed by every cell in your body, while T4 is a storage form. This conversion goes on in your liver and throughout your body. But when we're ill our bodies sometimes don't do this bit properly, and we end up without enough T3, even when on a high dose.

You need to take some T3, as cytomel or something that contains it like NDT. You can drop some of your T4 medication when you do. It might even be worth dropping some now, if you want to be persuasive to doctors, as it's not doing you much good gh

Struggling to take a treatment that contains T3, even though blood tests show you really need it is quite common. Did it give you a racey, restless feeling, as if you were overmedicated? If so, this is because of a cortisol issue, contributed to by low vitamins.

There are 3 routes you can take, ideally all at the same time:

1) Have a 24hr saliva cortisol test, and test based on what you see. In the UK you have to get this privately and self medicate or find a rare functional doctor.

2) Test your vitamins, Vit D and B12, folate, ferritin, and supplement to get them to optimal levels.

3) You can still start taking T3, but take it super slow. Get a razor blade or pill crusher, and find the tiniest piece of tablet you can consistently get. Start with just that, and stick for a week or so before trying to raise. If you get the overmedicated feeling, drop back to even less, or if you do fine hold for a few weeks, then try to raise again. I've heard of people having to wait up to 12 weeks before being able to raise.

Each of these 3 treatments will make the other ones easier as it improves.

Good luck!

[TacoTico in reply to SilverAvocado]

Hello and thanks for your reply. My vitamin D is 59 (30-100), b12 427 pg/ml (200-1100) and folate 8.3 ng/ml (anything above 5.3 is considered normal). I'm working on the D; b12 could stand to go up some and i'm not sure how to interpret the folate level.

When I took NDT the fog got worse, I was headachy and sluggish. I believe I got up to 1 1/2 grains before going back to synthroid. I just remember feeling more unwell than usual on it.

Not sure how I will go about trial of t3 if my doc refuses to prescribe it. I am on my third doc right now; this one is at least open to trying other things and mentioned that she thought perhaps something adrenal was going on. I will wait and see what she says about my labs before rushing off to find a new one. Sigh...

[SilverAvocado in reply to TacoTico]

You just said exactly what I would have said about those vitamin results! I don't know much about folate, either, but if you're supplementing B12 it's a good idea to take a good B-complex, too. That include folate, so you'll know there's some going in.

Simpler to try T3 anyway. Then you'll find out if it was the T3 that was causing problems. What you're describing sounds more like maybe an intolerance to fillers, or starting on a too low dose. Although your dose sounds quite decent.

Many people on the forum end up self medicating if they can't find a doctor. I guess you're not in the UK. If you're in the US Stop the thyroid madness website has a lot of advice for sourcing hormone, and maybe for finding a doctor that will help you.

[TacoTico in reply to SilverAvocado]

I just saw that I can get t3 from other countries without a script. That's kind of scary to me, as I know fooling with hormones can be tricky, but I am willing to take that risk to feel better and get the help I need. I know I would need to start on a very low dose to see how it affects me.

All of the sites I have studied combined have been very helpful! Fingers crossed that doc will let me try and I won't have to go the alternate route yet. I will look into additional b12 support as well, although I suspect she will suggest that when she contacts me. Thank you so much.

[SilverAvocado in reply to TacoTico]

TacoTico, it's always a bit scary at the start! I hung around the forum for a long time before I tried, soaking up whatever information I could. Eventually you get confident at interpreting blood tests, planning doses, etc.

Good luck with your doctor!