# Confused, new dose, feel worse!



## Kattakko (Mar 19, 2013)

So 5 months ago I moved from Canada to France. About 5-6 weeks ago I went for blood tests. The only thing thyroid related that the doc tested was TSH, it was above 4 (don't remember exact number) so he upped my dose. So for almost a month now I've been taking 225mcg of Levothyrox (I was on Synthroid before, but they don't have that here).

I don't feel any better at all... I actually feel worse! Soooooo tired in the morning, I wish I could dig myself a hole and sleep in it for a week! But when bedtime rolls around I can't sleep!!! I'm up till 2am sometimes!! My fingers and ankles/feet hurt more now than before. When I get home from grocery shopping I feel like my calf muscles are going to fall off and my feet are going to explode!! I've also been feeling depressed, I feel like crying all the time!

I saw a new doctor who was very helpful and gave me a paper for new blood tests, including T3 and T4, and other thyroid related tests but she wants me to wait another 2 months now.... I don't know if I can wait that long!! I feel like I'm going crazy and falling apart at the same time!

Should I see if I can go for the blood tests sooner? What's the minimum wait time after a dose increase before retesting?

I'd be pulling my hair out but, you know, it comes out fine on it's own lolll


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## joplin1975 (Jul 21, 2011)

Do you still have you thyroid? Are you male or female?


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## Andros (Aug 26, 2009)

Kattakko said:


> So 5 months ago I moved from Canada to France. About 5-6 weeks ago I went for blood tests. The only thing thyroid related that the doc tested was TSH, it was above 4 (don't remember exact number) so he upped my dose. So for almost a month now I've been taking 225mcg of Levothyrox (I was on Synthroid before, but they don't have that here).
> 
> I don't feel any better at all... I actually feel worse! Soooooo tired in the morning, I wish I could dig myself a hole and sleep in it for a week! But when bedtime rolls around I can't sleep!!! I'm up till 2am sometimes!! My fingers and ankles/feet hurt more now than before. When I get home from grocery shopping I feel like my calf muscles are going to fall off and my feet are going to explode!! I've also been feeling depressed, I feel like crying all the time!
> 
> ...


Have you had your ferritin tested?

Ferritin (should be 50 to 100; the closer to 100,the better) 
http://www.thewayup.com/newsletters/081504.htm

And actually, it would benefit greatly to get the FREE T3 and FREE T4 labs instead of the Total 3 and Total 4.

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Sorry you are doing so poorly!


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## Kattakko (Mar 19, 2013)

I put some info in my signature, not sure if it will show up so I'll put it here too!

Ultrasound March 2013
Small gland, left side 0.65ml, right side 1.35ml with the middle region being 2.8mm wide 
(translating from french, don't know all of the exact terms!) 2 nodules on the left, 8mm and 7.5mm. 
One on the right being 9.5-10mm, and something (lymphnode?) on the right in my neck measuring 20mm long and 8mm wide.
03/2013 TSH 4.75 range 0.27-4.20)
27/08/2012
FT4 16.0 11.5-22.7 range
TSH 4.39 0.4-4.0 range
16/04/2012
Ac Anti-thyroglobuline <20 0-40 range
Ac Anti-thyroperoxydase >1000 0-35 range
TSH was within range!

Ferritin and FREE T4 and T3 are on the list of things to test Cortisol too and others I can't remember right now.

I'm a 32 year old female and I've still got my thyroid. Although right now I just wish someone would yank the thing out!!!


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## Octavia (Aug 1, 2011)

Okay...my initial reaction after reading your dose and the fact that you still have a thyroid is HOLY CRAP!!!!! That's a REEEEAAAAALLLLLLLYYYYYYYY high dose. Most (if not all) of us here WITHOUT a thyroid aren't anywhere near that dose of Levo.

What was your previous dose, before this recent increase to 225 mcg?


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## joplin1975 (Jul 21, 2011)

Octavia said:


> Okay...my initial reaction after reading your dose and the fact that you still have a thyroid is HOLY CRAP!!!!! That's a REEEEAAAAALLLLLLLYYYYYYYY high dose. Most (if not all) of us here WITHOUT a thyroid aren't anywhere near that dose of Levo.


My thoughts exactly!!! I don't have a thyroid, am a husky/athletic type, have an active lifestyle and am on 150mcgs. So holy crap!

I agree that you need that free t3 tested. I wonder if you aren't converting t4 to t3 efficiently...


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## Kattakko (Mar 19, 2013)

lolll Yup!

It was increased from 200 mcg! That almost seems like a silly question to me loll

3 years ago I started with 5 mcg of Synthroid, and I've increased over time to my 225 mcg dose now. I've gone through the whole Synthroid rainbow!!! I saw 2 doctors in Canada, who did very little and now 2 in France, the second who is doing a bit more, I already have a referral for an Endo after my next blood tests.


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## Octavia (Aug 1, 2011)

WOW! Honestly, on that dose, you might as well have your thyroid removed! I can see why you want someone to yank it out!

To answer your original question, the standard protocol is to wait 6 to 8 weeks after a dose change to test labs again.

Dumb question, but you are taking it on an empty stomach and waiting 30-60 minutes to eat, right?


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## Kattakko (Mar 19, 2013)

I take it on an empty stomach, but my first coffee follows closely. I rarely eat anything before 11am. I'm up at 8 at the latest, 4 children and a working hubby.... need my morning coffee to function!

I told my new doc that I wanted it out. She's not a specialist though.... don't know how the Endo will react to me though.

I'll give it another month but I won't wait 2 more months before retesting. I am slowly going crazy and I don't know how much more of this I can take!!!


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## Octavia (Aug 1, 2011)

I can understand that!

If you are having discomfort (voice, swallowing, feeling "crowded" in your neck), that might bolster your argument for surgery.


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## Octavia (Aug 1, 2011)

I suspect that if you do get your thyroid removed, your antibodies will calm down, and eventually you'll be back to a "normal" dose of Levo.


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## Kattakko (Mar 19, 2013)

I've been going through the pro's and con's of having it removed and for me I do believe that the best thing would be for it to come out. I hate it and I hate everything it's putting me through and I hate that doctor's don't dig deeper! Like seriously! It's been 3 years, my dose keeps going up and no one does anything?
Meanwhile I'm going crazy, everyone thinks I'm crazy, and when I go hyper, man is that ever a kick in the pants.... The worst is being happy, because I am happy, but feeling like crying all the time, and wanting to crawl into a hole!!!

Anyways.... I'll check the date on my last tests and calculate 6 weeks. But that will probably fall during the time that I will be out of the country, so right when I get back I'll go get the doc to change her prescription for my tests so I don't have to wait as long! I've been a mess for too long already!


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## surge (Aug 15, 2012)

You have nodules, and increasing symptoms, so that should be enough to recommend surgery. I had my thyroid out in November b/c of fluctuating symptoms from Hashis. My antibodies were high, like one of yours-- though all of mine were elevated. My primary care doc recommended removal for easier management and my endo went along b/c that way, I wouldn't need follow-up ultrasounds to check on the nodules.

As far as bloodwork, if you're nervous/not feeling the results of an increase 5 weeks is the minimum for bloodwork, I think. My endo told me after one fairly good result that I could be checked again in 3 months and I totally freaked out. After a month, I started feeling really, really slow again-- gained weight, hair fall kicked back up, constipation, memory troubles, and needed more coffee just to function, not even to feel like I had a boost of energy-- so I had my primary re-run my numbers and sure enough, my tsh had crept back up and my FT3 was low.

I think it's normal to ask for some sort of check after 5-6 weeks and I would urge you to persist with your doc-- especially if your numbers aren't stable. You've had one okay result. I would wait to lengthen the time between blood draws until everything holds steady for 2-3 checks AND you feel good. I waited longer and since it takes a couple of weeks for the meds to kick in after the adjustment, I ended up feeling bad longer than I should have (I knew I needed a dose increase back in Jan. and my endo didn't agree. Grr.). So YES. Ask for another test!


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## Kattakko (Mar 19, 2013)

Ugh! I've been having a rough few days! I let hubby read this thread and I think it really sunk in for him, reading others opinions on what's going on with me, kind of putting it out in the open and not just in my head!
Since I already have a letter to go see an Endo, he will make the call to get me an appointment (anxiety prevents me from doing this myself). We still don't have health insurance (getting the paperwork together), but he doesn't care, he knows me and sees what I'm going through.
I'm leaving on Friday to go back to Canada for 10 days with my 2 oldest babies... I'm anticipating a hyper swing, this will be my 3rd trip back in 6 months and I've gone hyper both times before.... I'm assuming the stress causes this, as I was super stressed to be traveling alone.
I will be going to the hospital where I have all tests and blood tests done before to get my file. I had an ultrasound about 2 years ago that I will be able to compare my march US too. And hopefully I will be able to pull all of my blood test results too and look at all of my results for the past 3 years.

When I get back hopefully I will have an appointment schedules with an Endo AND I will be going back to see the nice doctor that I like to see if she will let me go for my blood test sooner.... by the time I get back it will be a good 7 weeks since my last tests, and dose increase.

I'm just really nervous about all of this.... Things happen so fast here in France, a lot quicker than in Canada! And here they give you a copy of your results, usually before the doctor gets his copy! Even for the ultrasound I left the office with a copy of the report and some pics! 
I really want to get this thyroid out of me... As surge has said, with nodules and increasing symptoms, it's just not a manageable case, and I hope they see this and I won't have to push too much!

Anyways... That's pretty much it... I'm nervous and panicky, and I have another 2 weeks to wait. I'll have plenty to keep my mind busy though, so it should be ok.

I want to thank all of you for taking the time to read this. Your support and thoughts are greatly appreciated. I feel so very alone at times and this place is truly wonderful!!


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## Octavia (Aug 1, 2011)

Safe travels, and please keep us posted!


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## surge (Aug 15, 2012)

If you do want surgery, do start laying the ground work. Investigate the best surgeons in your area. I was lucky enough to be near major hospitals with endocrine surgeons available. Some people use ENTs and some people use general surgeons. Because you are consistent with Hashi's, your thyroid will be a sticky mess. This means it will be harder to locate and protect the parathyroids and easier to nick the vocal chords, so you want someone who has done this a lot (several thyroidectomies a week) and hopefully uses a camera to help locate the chords and parathyroids. Be picky here. And don't be surprised if the surgeon questions if you really need the thyroid out. They don't like to do hashis thyroids and just want to make certain you understand the risks and the chance that you'll still have severe symptoms for a time after surgery.

Your incision might also need to be larger if your thyroid is enlarged. Mine is closer to 2.5 inches-- so longer than other people's but as thin. It fits right in with the other lines on my neck and I find I do occasionally notice it but don't mind it at all.

Be picky when it comes to the surgeon...it's tempting to settle just so you can get the thing out. I felt this way, but once I found my surgeon, I could've had the surgery the next week if I'd wanted (I needed a couple of weeks to get things at home and work organized).

Recovery isn't a joke-- lots of hormones and it takes months to titrate, so some of your symptoms might be sticking around for awhile even after surgery.

You should also ask your doctors what you need to do to get a referral to the surgeon. It is such a common surgery that I do think if you decide to get it out and just continue to outline your reasons-- the high dose and still wonky symptoms & nodules-- you may experience a little resistance, but will eventually get the team on board. I'd bring all that good paperwork you're collecting with you; I find it helps to be able to point to specific numbers. Good luck with the next couple weeks!


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## Octavia (Aug 1, 2011)

That's great advice, surge!

When you do talk to a surgeon, make sure he/she uses a nerve monitor to help protect your recurrent laryngeal nerve (vocal cords).


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## Kattakko (Mar 19, 2013)

You guys are amazing! hugs1 That you Surge for your comment! I will definitely try to find the perfect surgeon! I will not settle! I'm a human, not a guinea pig, I am a patient, not servant, I won't settle for anyone just because they have a diploma and I don't. Hopefully the Endo will be able to guide me with this as I have no clue how this works here!
As for the incision, they could make it look like someone tried to decapitate me and I probably wouldn't care! Ok maybe I'm exaggerating but it isn't something I'm particularly worried about.
I've been on a roller coaster for 3 years now. It started 15 years ago, got bad 10 years ago and completely out of hand 3 years ago. I'm ready to get off this ride and if it takes another year to get everything to settle down then I'm ready for it.
I'm trying my best to get all of my old result together. I was shocked at how thin my medical file was when the secretary handed it to me. No thyroid US, no lung scan results (I also have a nodule on my right lung that needs to be re-evaluated), no blood test results.... makes me think they are trying to hide something!!! I didn't have time before we left Canada to try to get more from the hospital but now I do, and now I need it!
My husband comes with me to my appointments, he know first hand the resistance that comes with thyroid stuff. He's also well spoken and isn't afraid to ask tough questions. I know that if I'm not able to stand up for myself because of anxiety or nervousness he will! 
Is there any way to get everything to calm down before surgery? To make it less messy?

Thank you again for your support and advice! It really means alot to me and it's truly appreciated!!!

:hugs:


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## surge (Aug 15, 2012)

I wish there was a way to calm it down pre-surgery. My only, suggestions: first, stay on top of your meds and try to be on the right dose-- I know that's not easy in your case. Second, you can make some diet changes that might have an effect, albeit minor: avoid alcohol, sugars, dairy, grains like wheat and maybe corn, caffeine-- though you might feel you need this just to truck through the day, eat lots of fish and take fish oil. Drink lemon in warm water (with a dollop of coconut oil, too! if you feel like it OR grate ginger in your hot water). Add fresh ginger to everything like salad dressings and try adding a little tumeric where you can. These changes won't save your life but they might calm things down a bit-- it's an anti-inflammatory diet. Some people also avoid nightshades too-- tomatoes, in particular.

When I'm really struggling with thyroid issues, it feels like too much work to also have to worry about diet, but putting good foods in does really help me feel better to a small degree.

I particularly love a green smoothie in the morning with 1 cup almond milk (unsweetened), a couple handfuls of spinach or kale, tsp minced raw ginger, 1/2 apple, banana, 1 tbsp almond/sun/peanut butter, 1/2c water and ice

OR

2-3 handfuls of baby kale, 1 cup coconut milk (from can), 2 dates + ice+water to desired consistency

Again, these are small measures to nourish yourself in the midst of a big storm, so the improvements won't be radical, but they might help soothe and energize a tad.

Good luck. Let us know what else you learn.


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## Kattakko (Mar 19, 2013)

Ugh! I hate thinking about food! Although I completely understand that small changes could have small but good effects! 
So I've been in Canada since Friday and I haven't stopped since I got off the plane!!! I even managed to go to the first clinic I used to go to and they gave me a more complete file! Including my first thyroid ultrasound!! I haven't had time to really translate it because it's in French too but I'll try.
Right side measures 1.5cmx4.6cm, Left side 1.7cmx3.6cm. We see 'septums'? (don't know what that is) and many tiny hypo-echoic(?) images. And it says increased volume maybe due to thyroiditis.

Another thing that I have learned...

2010/04/02 
TSH 23 range 0.40-4.00
FT4 13.4 range 11.5-22.7

2010/10/29
TSH 19.10
FT4 12.5

2011/03/24 (Around 8-10 weeks pregnant)
TSH 5.49
FT4 13.9

My TSH was only within range during my pregnancies, but for a year, including the fist 8 weeks or so of my 4th pregnancy it was way high! And I blame my baby's heart defect on this.... had to blame it on something right?!?

Hubby should be calling today to make an appointment to go see the specialist when I get back, and I'll be pushing for blood tests sooner too. I'm done waiting!!

Anyways that's pretty much it for now!


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## Kattakko (Mar 19, 2013)

Ugh!! I feel like I'm in a permanent state of jetlag!! I was exhausted before our trip (anxiety, stress...), I was exhausted during our trip (Kids had me running around the whole time), and I'm exhausted now! I'm tired and I hurt all over, ankles, feet, fingers, the usual.

Anyways hubby told me that he had in fact gotten through at one of the endo offices, he forgot to tell me loll My appointment is May 31st. Which is the 5th Friday of the month! So I'll try to see my general doc next week (this week is weird, I'm not used to all the French holidays but Wednesday and Thursday are off and hubby probably won't go in to work on Friday). I'm gonna try to get the blood tests done before going to see the endo.

I guess that's all, just a little update!


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