[ChristinaDe]

#1059777

Has anyone else experienced this?

I had TT on 2/1/13. Immediately afterward I began 100mcg of Synthroid. At my post-op checks I felt great…neither hyper nor hypo. I even began to look better.

2 weeks ago I had my last post-op visit (which was about 4+ weeks post-op) and my TSH was 2.38. Felt great. Immediately after that visit I refilled my Synthroid (same dose, brand name) & stopped taking my Calcitriol per the surgeon’s order (since my parathyroids were apparently back online). I’ve continued to take my Synthroid as I did before, not missing any doses…pretty religious about it all.

Then a week later I began to feel hypo. ALL the classic symptoms. Found it hard to believe that I actually was hypo since I’d just had labs done and they all looked so good. So I figured I just wasn’t feeling well. A week and a half later I felt even worse, so I called the surgeon and he ordered another TSH and T4 (he never orders T3 for some reason & I don’t have an endo right now & can’t get into one til late June since there was a 6 month wait list in my town). Anyway – now my TSH is 13.85! In 2 weeks? I would question whether the lab made a mistake except that the 2.38 and the 13.85 both match what I was feeling at the time they were drawn.

My question is, has anyone had that significant of a change in less than 2 weeks without changing how they took the med and while sticking with the brand name version? I wasn’t expecting this!

[Kimberly]

#1177440

Hello – Hopefully, you will get some additional responses, but it’s common to need a dosage adjustment (or a few adjustments) post-surgery. Did your surgeon recommend a dose adjustment to get your levels back in balance?

Take care!

[snelsen]

#1177441

The symptoms fit the lab, as Kimberly (and you) noted. Yes, this big jump is possible. Yes, I have heard of this radical change from people who are just beginning to take thyroid replacement. The dose you begin with, is pretty muc an guess. You have to begin someplace. So it is possible that it was too low to begin with. It takes TWO MONTHS minimum to really evaluate a dose change. You do not get reliable information before that, or at leaste 6 weeks. I think you will find that the surgeon will not be interested in following your Graves’ path. How about a primary are doc? Many are pretty good at managing synthroid, ordering labs. And ask for the lab you want, other than TSH. Do you have one?
You need a doc who will be interested, with whom you can actually contact when you have questions.

I suggest to you that you ask the surgeon’s office to call a referral to the endo’s office, also that you call, put yourself on a cancellation list.
I am sorry you feel so crappy, People do not understand how terrible hypo is until they experience it.

[ChristinaDe]

#1177442

Kimberly ~ Yes…the surgeon did recommend an increase in Synthroid, to 112 mcg. He also ordered a repeat in labs in 6 weeks, but said that if I’m feeling NO better in 3 weeks to go ahead and repeat them early. So we’ll see how that goes. Still shocked that I felt so good for the first month post-TT, with such good labs to go along with that, and then BAM! Hit a brick wall & labs reflected it!! My muscles hurt and the joint pain is unbelievable, along with the fatigue and general malaise. So now I wait to feel better again.

Shirley ~ Both my primary care & my surgeon tried calling the endo to get me in earlier, but to no avail. New patient appointments are nearly impossible to get. And I’ve been on the cancellation list since December. No luck there either. In fact, I originally had a May appt scheduled (did that back in early January) – but that has since been changed, by them, to the end of June. Instead of canceling my surgery, my surgeon agreed to follow me until stable and then to refer me back to primary care (who has agreed to follow me as long as it takes). The endo who diagnosed me fired me as a patient just before surgery…she took issue with the number of questions I was asking…felt that I was questioning her medical competence. It all got pretty ugly. Strangest thing I ever saw. It felt like she was more emotional than I was! So the surgeon & primary care are trying to help me out in spite of this. I did ask the surgeon to include a T3, along with the T4 & TSH on my next set of labs & he agreed to do it.

This endo shortage, and the shortage of endo docs that are interested in Graves’ is really complicating my life & the lives of so many others I see on here. It really makes me want to go back to school for my Nurse Practitioner license…and to start a speciality practice for thyroid issues. But at 51 I’m not sure that’s practical anymore!

[Kimberly]

#1177443

@ChristinaDe – Had to laugh at the “emotional endo” story! Glad that the surgeon & your primary care provider are filling in the gaps for now. And that’s good news that the surgeon gave you the option to come in sooner if needed.

I don’t know how long it takes to get certified as a NP, but it’s *always* a bonus for patients to see someone who has “been there, done that”. You would be great!

[adenure]

#1177444

Hi!

My endo. told me that your body stores your thyroid hormone from 2 weeks to 2 months (post surgery). So, you were probably feeling good and had normal numbers (in part) because of your body’s own stored hormones as well as the Synthroid. As you get further out from your surgery date, your stores will be depleted, and your body will rely entirely on the Synthroid. Your TSH can jump around a lot after surgery. I went from 6.35 to 0.79 two weeks after my dose was increased from 100 mcg. to 112 mcg. (I’m on brand Synthroid as well). Hopefully, your dose increase will bring that TSH down. Get labs in 6 weeks to see how the 112 mcg is working for you.

I did start to feel better after 2 weeks on it, but 2 months on it made me feel much better. So, try to be patient with it. Your body is still recuperating from Graves, surgery, figuring out life without a thyroid and the Synthroid- it takes time. For me, it was about 4 months total before I started to feel leveled out. I’ve been on 112 since and I’m 8 months post TT now. My TSH has slipped slightly below normal (0.26)- my labs from yesterday. But, my free T4 is upper end of normal and my total T3 is normal as well, so my doctor is fine with me staying on the 112. So, there are fluctuations even when you’re relatively stable. I do feel as if I have a wee bit too much Synthroid, but my heart rate and sleep and all that is good, so I’m sticking with the 112 for now. Good luck to you & don’t worry too much. It’s hard, but with time, it will all level out.

[ChristinaDe]

#1177445

Alexis ~ Now that you mention it, I do recall my surgeon warning me preoperatively that most people experience a “crash” once their natural thyroid stores are depleted. He said that if it’s going to happen, it usually does so at around the 2 week mark. So when I got to 3, then 4 weeks without it…I thought I’d escaped it. And then I forgot all about that phenomenon! Thanks for reminding me. I’m just shy of 2 months post-TT, so I’m within the timeframe that your endo described. That makes a LOT of sense!! Which makes me feel so much better about the whole thing. My surgeon also said what you said…that in about 2 weeks I should see a reduction in my symptoms but shouldn’t expect to see a full result until 6-8 weeks out. So we plan to retest then, unless there is no reduction in symptoms. Then we’ll do it at 3 weeks. I’m pretty far out of range, so it may take a 2nd bump in dose but maybe not. All in all, I can’t complain though. I had almost 6 weeks of feeling great and this sounds like a short-lived and temporary bump in the road. And for me, hypo is nowhere near as bad as my hyper was. Even with a TSH of nearly 14. Can I ask you a question? I’ve read in a couple of places that a good, but general rule of thumb for Synthroid is 1 mcg per pound of body weight. My body weight is 125. So I’m thinking that may explain why 100 mcg didn’t work & looking ahead I’m wondering if I should expect that 112 likely won’t yet be my final dose. Is your dose close to your body weight? I guess I’m looking for the anecdotal…

As always, great to hear from you! I seem to be closely following in your footsteps. Before TT I read so much about the horror of it all. But in you I saw what happens when the surgery course goes well. Minus a couple of bumpy patches, yours seemed to go very well and that encouraged me. Mine has followed suit & I am so thankful for that. I can still say that, even with this sudden rise in TSH & hypo symptoms because I know they are temporary & I know what feeling good feels like thanks to the weeks that preceded the drop. I fully expect that in 2 weeks that I’ll be able to get through my Pilates class with a whole lot less pain than I felt last week! And that it will only improve from there!!!

Kimberly ~ I already have a master’s in nursing (but haven’t worked in the field in over 5 years), so I’d only need a post-graduate certificate to go the NP route. Even that would likely take 1 1/2 to 2 years due to the clinical hours needed. But I’m seriously considering it. Especially now that the anxiety and brain fog are gone! I’ve already begun to envision a practice model that I like. There seems to be a real need for a different model of care. I’d give anything to see a one-stop shop for all the needs we thyroid and Graves’ patients have. And perhaps something that allows us to handle labs and med adjustments through email. I don’t know about everyone else, but docs don’t even touch me when I go in to see them. They just talk & listen. Those visits could be done telephonically & through email. Saving time & money. Something constructive to think about that makes me feel some “control” around the issue of Graves’, even if it remains in the dream file. But first I suppose that I need to get my own TSH down!! Nurse, heal thyself!!!!! LOL

[snelsen]

#1177446

Here’s an idea! Move to SEattle, get your NP, and then be MY NP!
And, yes, I completely understand your reluctance to go back to academia, struggle to get into an NP program, spend a ton of money and 2+ years of your life, to begin a private practice in your mid-fifties. I also have a Masters in Nursing, and considered being an NP when I was in my mid-fifties. But I could not BEAR to go back to school again, with all the mickey mouse that accompanies some good stuff. There are RN’s in the NP program here who have NEVER spent a day in clinical practice, except in school. Most have not been on a good ole’ med surgery floor for any time at all.

Yes, Alexis had a great reminder about post TT. I did escape all bumps after my thyroid surgery, but I had it so long ago, that I had a sub-total thyroidectomy, so was euthyroid for about 25 years. Then began Synthroid, so after the crazy time at the beginning, and having all the docs miss the diagnosis for far too long, my Graves’ experience has been relatively smooth.

BUT-I did not know one darn thing about TED, or if I did, I had forgotten it completely. And that did not hit me until 5 decades later. Of course, the first five ophthalmologist I saw, did not think of it, either, they just kept prescribing different RX’s, saying my eyes were “sure changing a lot.”
Well, they were, and not until I got diplopia, and saw two monitors, when was working in preop and postop, did I realize that something was super wrong with my eyes. For me, TED is worse than Graves’, but that is because for me it was, and still is, worse than Graves’.

Thanks for your explanation of all that you have done to get an endo appt.
The endo you had, sounds very concerning, that she is like that. I think your assessment is probably correct, unfortunately. She sounds very unsure.
Scary.

I don’t know a thing about the mcg/kg, but I have “heard of it” before.
It has always been my impression that it is entirely guesswork on where to start Synthroid. Because of where it is metabolized, and how, I don’t see a lot of reason why weight matters. Well, if you go back to school, this can be your dissertation!!!!!!!!
Shirley

[ChristinaDe]

#1177447

Shirley ~ I can see why TED would be worse than the Graves’ thyroid issues. They are so much more complicated, there seem to be even fewer qualified, interested specialists AND there is so much wait time! I have mild TED, very mild…but I’m still active. But it does scare me more than the thyroid issues do and as you all know, they scared me to death!

A nurse-driven model could really work, couldn’t it? I’d go if there was one here! Especially if I knew it was someone INTERESTED in the disease and its nuances…the whole picture. Someone who understood how it FEELS, not just how it looks on a lab sheet. Hmmm…

As for dissertations in this field, I can think of so many. Wouldn’t know how to choose. LOL!!

[adenure]

#1177448

Hi!

Sure, I’m about 120 lbs. (5′ 4″) give or take a pound or 2 depending on the time of day!

[ChristinaDe]

#1177449

A teeny thing!

[Kimberly]

#1177450

Hello – The guidance from the ATA & AACE recommends 0.8 micrograms per pound as a starting dose of replacement hormone. (For patients who are older or have other co-existing medical conditions such as heart issues, docs might decide to start with a lower dose and slowly build up). However, after the initial guess, future dose adjustments are determined solely by labs. Every patient is different; this is definitely not a one-size-fits-all process!

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