[WWWI2]

#1060350

  
Current Labs
T-3, TOTAL 126 NG/DL Range 76-181 
T4, FREE 1.2 NG/DL Range 0.8-1.8
TSH 0.53 MIU/L Range 0.40-4.50

I was taken off meds in the summer and my TSH was 1.2 In September it went down to .7 Now it’s .53

I began to get symtoms at .7 and started on psych meds as a result (The endo said she could do nothing else for me so this was the only way to get relief, be able to sleep, calm down etc) and now at .53 I’m more symptomatic(worse insomnia, agitation, anger, crying, palpitations, muscle pain etc) and I don’t want to increase the psych meds because I still believe my symptoms are directly related to where my TSH is and I thnk it’s insane to go on psych meds for a thyroid problem. Can anyone explain what might be happening the TSH?

A year and a half ago my tsh was < 0.1, I was diagnosed with Graves at that time. This seems to be trending downward again. I'm highly symptomatic. However, my doctor does not appear to want to give me even a small dose of meth until I get below .4. Am I asking too much to try the meds to see if I can get symptom relief? Is that wrong to take the meds even if I’m not under .4? Any thoughts or input would be greatly appreciated. Thank you

WWWI

[Raspberry]

#1182109

I’ll be interested to hear what others say on this one. Sorry to hear you are betwixt and between treatment options. I’m in a similar place – my FT4 and FT3 are midrange but my TSH has been around .7 and .8 the last couple months and I’ve had psych symptoms too. Truly unsure of what to do about it myself. If I take more methimazole I risk going hypo, yet I have some hyper symptoms. So I very much relate to your predicament.

As I remember my initial slide down into Graves the TSH went down first while the Ft’s were relatively normal – I had thyroid labs 3 months before the onset. I don’t know if methimazole does much good at that stage even if you can get it?

[WWWI2]

#1182110

I’m not sure I understand. You don’t think meth would do anything? I keep thinking if I was OK at 1.2 and worse at .7 and even worse at .53, if I can stop the progression and turn it around maybe I’ll get some relief. you don’t think so?

Would an antibody test be worth while? I know I failed the last one I took.

I know my first indicator of an issue was a TSH of .4 from my PCP. Then tested again and it was undetectable and I went to the Endo from there. But because my memory is sh** I can’t remember what my scores were. I’d have to look back.

Sounds like you are in a rough place. If you slightly increased the meth wouldn’t that maybe improve your symptoms without causing you to go hypo? I’ve heard of every other day increases or half of a pill (2.5 mg)?

I guess the question I am asking is if I have confirmed Graves, if my TSH is lowering, if I’m symptomatic why is there a question as to what to do? What am I missing?

WWWI

[Raspberry]

#1182111

HI WWWI2, the bit you might be missing is that the purpose of the methimazole is to lower the actual thyroid hormones (FT4 and FT3) and TSH goes up as a by-product of that. A low TSH in and of itself technically is not able to do anything bad to you – it’s an indicator rather than an actor. Many people in their initial onset of Graves maintain a TSH of 0.01 for months and the endo calibrates the methimazole dose based only on the FT4/FT3 until the TSH “recovers”.

So in subclinical Graves’ it’s tricky because your FT values are the ones that are determining how you feel and are good (supposedly) yet your TSH is sending out a warning. I suspect that there’s a missing piece to this chain that isn’t fully understood yet. So if you take more methimazole you potentially drive the FT values too low and get hypo symptoms though you may succeed in eventually driving up the TSH.

And here ends the last of what I can say with any confidence….. I noticed on AZGravesGuy’s very first post he mentions having been subclinical hyper in the past. Maybe he might have something to share? Me I’m waiting on lab work right now so I’ll let you know what happens. My endo said that if my TSH hasn’t risen any she’s willing to let me raise the methimazole a tiny bit, but wants to retest me in 3 weeks to make sure I don’t go too low on the FT’s.

PS – Antibody tests (TSI or TRab) can be helpful to see how active the Graves’ is but some docs don’t like to order it because it doesn’t affect their treatment decisions. I like to have it about every six months just to have an idea of how close (or not…) I might be to remission.

[Kimberly]

#1182112

Hello – Agree with the post from LaurelM in another thread that symptoms can sometimes appear when levels are moving – even if they are still within the “normal” range.

There is support in the medical guidelines (which you can find in the “Treatment Options” thread in the announcements section of the forum) for treatment of subclinical hyperthyroidism (low TSH, normal T3/T4) if the patient is symptomatic. However, I have not heard of any cases of patients being treated with meds if all 3 levels in the “normal” range.

However, with your TSH close to the bottom of the “normal” range — and with symptoms that are clearly affecting your quality of life — hopefully, your doc has you scheduled for an appointment in the VERY near future to get labs checked again.

[WWWI2]

#1182113

Raspberry

That’s the funny (not ha ha) thing. My T4 and T3 are solidly in the middle and my TSH is low (.53) and I’m highly symptomatic. I have scoured the web to find this same situation and have been unable to.

however, as I mentioned in a previous post, I saw my doc and she’s letting me take 2.5 mg every other day (with an initial ramp up of 5 mg once)

I really honest to god don’t know what it means. My doc said some people just have a naturally low tsh. But I’ve got such bad symptoms. She doesn’t believe they are all related to my thyroid, but I know at least some do.

I don’t want to go hypo and she’s checking me in a month to make sure I don’t, but man this is such a balancing act. I’m really glad your doctor is working with you and I hope you find what will work for you quickly. My doc is not a huge proponent, as you suggested, of antibody tests. But I wonder if that would give any more information as to why I’m in the situation I’m in.

Anyway, thanks for such a detailed response. I really appreicate it. I will check AZGravesguy out. Thanks!!

WWWI

[WWWI2]

#1182114

Kimberly,

Apparently someone heard your wishes because I did get to see my doc and she did provide me with low dose meth. So thanks for wishing for me !

You said “However, I have not heard of any cases of patients being treated with meds if all 3 levels in the “normal” range.” I haven’t either and I have no idea why I’m so symptomatic when they are all normal. What’s curiuos is my TSH seem to be getting lower and lower each month and yet my T4 and T3 are behaving just fine. What in the world?!?!

I’m guessing if I wait long enough the tsh will get lower than normal, but again, everything that i have read about subclinical or mild hypo is that there often is no symptomology and I have MORE than is reasonable. WTF?!?! lol

I hate being an anomily in an already anomilous situation ….you know?

I’m actually a little calmer today than the last few days. I wonder if the 5 mg ramp up is already helping or I’m just relieved that help may be on the way. Either way, I’m so grateful that this site is here and for everything you do I have been in HUGE distress for the last few days and hopefully, now that things are moving into calmness I won’t keep hijacking this site with my distress posts

Thanks again !

WWWI

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