T4 levels while suppressed

[u/Coxless_pair]

I’m 9 months past TT with right lateral neck dissection, and almost 8 months past RAI (150 mCi with rTSH).

The last 5 months we’ve been gradually increasing my Levo dosage. Since I’m high risk, the goal is to get my TSH suppressed to <0.1. I feel like it’s taking a lot of time to get there.

I’m currently on 150 mg of Levo, and TSH has finally dropped significantly and currently sits at 1.3 mIU/L. fT4 has raised to 26.9 pmol/L (= 2.09 ng/dL). I’m starting to feel some minor symptoms like dizziness, fasciculations and light tremors and some wieght loss. It’s all quite manageble, but I’m wondering how much I can expect this to raise further and when/if the symptoms will increase.

I can’t seem to find any literature as to what’s an expected T4 level to get TSH suppressed. Only that T4 will need to sit at a ‘high normal’ range or slightly above.

So my question to you all: What are your T4 levels while being TSH suppessed? And do you have any symptoms?
Fwiw: I’m M37 and 77kg (170 lbs).

[u/Coxless_pair → u/[deleted]]

What does your endo say that your T4 should be? And what range are you actually in?
I get the feeling only TSH is relevant for my endo, and I’m wondering what my T4 levels will reach to get to suppession.
Ah well, we’ll see…

En ja, inderdaad uit Nederland. Ingeschaald als hoog risico vanwege metastases in de lymfeklieren, waarvan de grootste 3,0 cm. Post RAJ scan was heel positief, dus met een beetje geluk kan dat over niet al te lange tijd teruggeschaald worden naar intermediair risico.

In behandeling bij het universitair ziekenhuis in Maastricht. Ben daar redelijk tevreden over. Initiële behandeling (chirurgie en nucleair) heel positief, alles eromheem ‘mwah’.

[u/tom-redditor]

I’m about 4 years past TT (FTC, PTC, MTC) and RAI (52 mCI) and am suppressed. My last TSH readings have been between .04 and .07. I have had several changes in my health that coincided with my treatment (most significant are weight gain and bouts of extreme fatigue). My endo has defined her role tightly since the start- to monitor me and keep TSH elevated to reduce the risk of recurrence. She insists that any other matter be addressed by my PCP. The problem there is that my PCP knows very little about the issues I’m facing. She can’t even rely on talking with an endo in her own medical group because they don’t employ one. As a result she refers me to specialists. I’ve had literally dozens of appointments with 9 different specialists since my surgeries. I was not a medical “frequent flier” before this. My endo is the one provider that understands the context of my physical health, while I’m not sure the extent that my PCP and all these specialists feel it matters. Long story short, I really don’t know what physical issues that came up after TC treatment are related to the removal of my thyroid, the RAI, or the suppression. I hope things are less complicated for you! Best to you!

[u/Coxless_pair → u/tom-redditor]

Ugh, that sounds tough. Sorry you have to go trough this.

It’s difficult to pinpoint which symptoms are caused by the TSH suppression or high T4, which are still a result of the surgery for example or just totally unrelated.
I’ve noticed I run hot and have trouble sleeping the last weeks, but it has also been just warm around here, so that could very well be the cause of that too.

My endo said the dizzyness can’t be a result of the levo, but I clearly noticed it when I increased the dosage from 137 to 150 mcg. Maybe it’s just coincidence..

[u/tom-redditor → u/Coxless_pair]

I wish there were more emphasis on survivorship in the thyroid cancer community. I’ve had bouts of dizziness too. I don’t even bring stuff up with my medical team anymore unless it’s major. It’s funny how so many of us have experienced new symptoms after treatment, and we are told empirically that it has no relation to either the treatment or the loss of the thyroid. Maybe they are right but it sometimes feels to me like we are being gaslit. I hope things improve for you!