[SueAndHerZoo]

#1060107

Hi Guys.
When my alarm goes off in 4.5 hours it will be telling me to take my first Levothyroxine pill (generic version of Synthroid). The surgeon gave me 125 mg to start and I assume we’ll adjust up or down in a few weeks depending on my lab results and how I feel.

I just started Googling possible side effects (I know . . .big mistake!) and after laughing out loud at some of them I decided to stop Googling and come here where I will get REAL information.

What should I be forewarned about and/or warn my husband about during the first few days / weeks of taking Levo? Headache? Hyperactivity? Moodiness? Hypo symptoms or hyper symptoms or fluctuations of both?

I wonder if I should have been started on a small dose and then climbed slowly but my surgeon has been so awesome thus far I am trusting she knows what she’s doing. As a reminder, tomorrow is day 5 after TT and this will be my first dose.

Thanks in advance for letting me know what to expect. I don’t know if I’ll feel anything, good or bad, the first day…. possibly takes days or weeks to feel something?

Sue

[snelsen]

#1180428

You’ve had great care. I agree with you that 125 mcg seems high to begin with. But maybe there is reasoning behind it.
In my experience, I had no, zip, nada symptoms at all. See how you”do,” but there can be no real evaluation for at least 2 months, by labs.

It is hard to distinguish the post op recovery (which does have symptoms, mainly being surprised over and over again, at how much energy and endurance you DON’T have) for about six weeks. With that dose, I doubt if you would pitch into hyPO land.

I guess, just wait and watch.
Shirley

[karenz516]

#1180429

Hi Sue, I had RAI on 12/14/12, my endo started me in April when I went hypo on .75 mg of Synthroid (I insisted on Synthroid) only because I heard the fillers in levo vary sometimes and I wanted to make sure I didn’t run into an issue. I felt fine when I started but I started to put a few pounds on, even though I ate healthy anticipating the weight gain. I seemed to get tired and at my next endo visit they upped my dosage to .88 mg., still put a few pounds on (20lbs in all to date. I am now on 100 mg of Synthroid and I take 2,000 IU of Vitamin D per day, Biotin Forte 5 mg, once a day for thinning hair (which happened when I went hypo, but has now fully grown back), Magnesium, 500 mg, 2 times per day, and a Centrum Silver. My endo wants to make sure I keep up the Vitamin D and Magnesium since I have been low since I was diagnosed with Graves. The slight changes I have experienced good and bad is there are days I am really tired or if I over exert myself it takes a few days to snap back. The initial thinning of my hair but taking the Biotin and using Nexus Biotin Shampoo (ordered on line through Amazon) solved that problem within a few weeks,. Compared to all the horrible problems when I was hyper and first diagnosed, these issues are easier to handle. I seem to still have the brain fog and get overwhelmed very easily, they are days I am extremely tired and stressed but I know that those are work related, my heart rate is usually between 50-60 bpm and it seems like every 5 days it will jump to 70-80 but I have Metropolol from my cardiologist to take on days I feel like my afib kicked in, which are rare these days, compared to when I was first diagnosed and had a heart rate of 180 bpm. So all in all things are MUCH better!!! I have noticed lately my eyes are bloodshot (I don’t drink) and itchy and bothersome some times but I am seeing an eye doc in a few weeks just to keep up on any eye issues. I did not have eye issues prior to the RAI.

Hope my little summary helped, Good Luck

karen

[Gabe]

#1180430

Hi Sue. My Levo was started day one after surgery at .50 mcgs. I insisted on my first labs at 3 weeks (instead of the ‘normal’ 6 weeks) and was found to be hypO already (TSH was 25). Was upped to .100 mcgs and feel pretty good. Definitely knew I was hyPo and didnt like it. My guess is he might raise it a little bit after next labs in 2 more weeks.

Not sure what you are googling and finding for Levo but my understanding is that it’s just a hormone supplement and the drug itself has no side effects. The feelings are related to the hypo, hyper, etc. not the drug. I could be wrong. One of my core reasons for going the TT route was to get off all the meds with all their side effects.

Your dose does sound a little high from the start but maybe that will keep you from going hypO. It never ceases to amaze me how every doc treats every patient with the same disease so different. Which is a good thing!

Best wishes,

Karen

[SueAndHerZoo]

#1180431

Thanks, Ladies. You are all my God-sends, as usual.

Maybe my dose of 125 seems high because I think I’m “bigger” than most of you. I am 5’5″ and have been as high as 170….. right now I think I’m probably at the 155 – 158 mark but I honestly haven’t checked in a week or two.

Most of the bad and scary reviews were written by, well…… you know – consider the source. I’m guessing the authors were hard to please and didn’t really know much of what they speak so some were frightening but after a few minutes I realized (again) you really have to choose what and where you read. But this list from Mayo Clinic shocked me and had me and my husband cracking up as I read them out loud:

Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine.
• Abdominal or stomach cramps
• Change in appetite
• Crying
• Diarrhea
• False or unusual sense of well-being
• Fear
• Feeling not well or unhappy
• Feeling of discomfort
• Feeling of warmth
• Feeling things are not real
• Feelings of suspicion and distrust
• Hair loss
• Headache
• Increased appetite
• Mental depression
• Muscle weakness
• Nervousness
• Quick to react or overreact emotionally
• Rapidly changing moods
• Redness of the face, neck, arms, and occasionally, upper chest
• Restlessness
• Trouble getting pregnant
• Trouble sitting still
• Unusual tiredness or weakness
• Vomiting
• Weight gain
• Weight loss

LOL Talk about covering it all! And as was mentioned, these are probably more effects of being hypo and hyper, NOT effects of the drug itself.

Have had the first Levo in me for almost 7 hours and so far I’m not feeling ‘unreal” or distrustful and suspicious. LOL

Sue

[karenz516]

#1180432

Hi Sue, if it is any help, I do know that they have to list every possible side effect, if they give 100 people levo and 1 person has vomiting lets say, they have to list it, doesn’t mean all the other 99 people had it, so I try and take “side effects” with a grain of salt. I hope Shirley can back that up with her expertise. I am glad you are on the road to recovery and considering what we all have been through, I think the few things we might feel will not be so bad. I do know, for me, if my heart rate which is usually in the 50’s and 60’s now goes up to 75 or 80 I don’t freak out like I use too when I was hyper or right after RAI, I try not to get anxious and tell myself it is going to be okay. Its a work in progress and I am getting better at it. I only take my heart rate and BP maybe 4 times a day compared to when I was really sick, it was every hour!!

Karen

[karenz516]

#1180433

Hi Sue, if it is any help, I do know that they have to list every possible side effect, if they give 100 people levo and 1 person has vomiting lets say, they have to list it, doesn’t mean all the other 99 people had it, so I try and take “side effects” with a grain of salt. I hope Shirley can back that up with her expertise. I am glad you are on the road to recovery and considering what we all have been through, I think the few things we might feel will not be so bad. I do know, for me, if my heart rate which is usually in the 50’s and 60’s now goes up to 75 or 80 I don’t freak out like I use too when I was hyper or right after RAI, I try not to get anxious and tell myself it is going to be okay. Its a work in progress and I am getting better at it. I only take my heart rate and BP maybe 4 times a day compared to when I was really sick, it was every hour!!

Karen

[Talley]

#1180434

Not anywhere close to an expert…have my own questions to post, but, after 4,weeks – I think your dose is a good place to start. I would rather start a bit high and come down than to dig out of a hypo state. I had headaches every other day for the first three weeks – those are about gone. I had heard some of the vitamins and special shampoos help but if you stop taking or using then you lose the hair growth. My hair stylist recommended the Phyto for thinning hair – 3 months on then three months off, repeat if necessary. I started this when I started the Synthroid and I have not noticed any hair loss – even though my numbers are dropping fast…again, only been 4 weeks, so we’ll see.

I wake up naturally around 5:30-6:00, take my pill with water and then go back to sleep so when I get up an hour later I can have my caffeine! I can’t get up and not have my tea;) we shall see how this works once the kids start back at school in a few weeks…

[SueAndHerZoo]

#1180435

Hi Talley.
Sorry you had headaches and had to crawl out of hypo state…. Lord only knows what I’ll be feeling in the next four weeks but it’s nice to hear that my surgeon may have started me at a good guesstimate. Yesterday and today I feel too much energy…. really hope I can sleep tonight. I was going to make myself some herbal or chamomile tea to see if that helps but in the hospital they told me to stay away from the herbals for another week or so. (shrug).

I did lots of chores around the house today and only forced myself to take breaks because I was hurting my back and muscles because of some of the awkward positions I get in for certain chores.

I set my alarm for 6:30 a.m., the pill is in a tiny pill container next to the alarm so I can take it and go back to sleep and if I wake up wondering if I took it or not I can check the container. When I go back to work I will start getting up at 7:30 again so a 6:30 pill should be fine… I can crawl right to my coffee after the “snoozings”.

Thanks for posting…… I’m going to try and keep coming here even after I feel wonderful (how’s that for positive thinking) to see if I can help others. This place has been PRICELESS and the people are worth their weight in gold.
Sue

[Kimberly]

#1180436

Hi Sue – So glad to hear that you are continuing to make progress!

I agree with you that the symptoms Mayo listed as side effects are almost all related to being hyper or hypo from not having the dose quite right. Hopefully, you have testing scheduled in a few weeks to see if the current dose you are on needs to be tweaked.

Take care!

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