My appointment with Dr. G was a disaster. Despite the dosage increase, symptomatically, I’ve felt the worst I’ve felt so far (horrendous brain fog, lethargy, sleepiness, coldness in hands and feet – the usual). And yet the numbers say the inverse: my TSH was 0.024 – well in the hyperthyroid range. This is apparently common for folks with Hashi’s – they can yo-yo between hypo- and hyperthyroid. Given the random spurts of racing heart rates and palpitations over the last month, and the recent crazy bouts of insomnia I’m dealing with, I knew this was going to happen. I have all the classic signs of a “thyroiditis flare up.”
Basically, my thyroid is losing its damn mind, as indicated by the graph below. My TSH levels are in blue:
Dr. G has again prescribed a dosage increase (up to 137 mcg now) and has moved me to Synthroid instead of Levoxyl. The difference between the drugs is minimal, but perhaps my body might prefer one over another. It’s like the difference between a Honda and a Toyota – they’re both good Japanese cars, but some people just like one over the other (for the record, I’m a Honda girl and Larry is a Toyota boy).
My T3 has also been steadily climbing with each dosage adjustment. I need to go back and do some basic primer reading on T3 and T4 levels and what the hell they mean, b/c I just can’t remember. This thyroid stuff is complicated and confusing.
I thought that perhaps Dr. G is moving a bit too conservatively, so I thought by telling a little white lie I might move things along more aggressively. I mentioned that Larry and I were earnestly moving forward with DE/IVF in the next six months (really, prolly not for another year), so let’s get my body in shape to make that happen. The most aggressive thing he did was send me to the lab for 5 vials of blood and tons of bloodwork: vitamin D, folic acid, estrogen & progesterone (I think), cholesterol, hemoglobin A1C (glucose over time), and a host of other tests. I spent a half hour in the lab, b/c once again, my notorious thin/spongey/rolling veins played their little games and it took 3 sticks, 2 cups of water, and lots of fist pumping and overly tight tourniquets to be able to actually fill any of the 5 vials needed. It didn’t help that the phlebotomist slipped when undoing the tourniquet and pulling out the needle and missed hitting the puncture wound with the gauze, sending a spurt of blood high into the air and almost all over my shirt (it did get all over my arm, her glove, and the tourniquet itself). I almost hit the floor – I just don’t do blood, my own or otherwise.
It’s been 8 months and I have little to show for it – I’m the heaviest I’ve ever been in my life, I feel miserable, and oh yeah, can’t have my own kids. I hate feeling like a prisoner in my own body. I hate knowing that I used to be 118 lbs just 9 years ago, could do a two-hour performance singing and dancing with only a minor asthma attack afterward, and I looked good. I looked healthy. My periods were regular, albeit artificial with birth control, and my sex drive was almost criminal.
Cut to me now: 186 lbs (I only gained a pound since my last appointment, but I just feel a lot heavier), wheezing just going up a flight of stairs, not to mention the joint pain in my knees (another side effect of Hashi’s – joint paint), and the worst acne of my life, a generally puffy face in addition to my double chin (another Hashi’s side effect), premature ovarian failure, and a sex drive that comes and goes, and never with any great fanfare. It’s practically a passing thought that I try to actually respond to once in a while.
I hate knowing that I could do so much more if I just had the energy, if I just had a body that would cooperate with me for more than a couple of weeks at a time. I hate getting stuck with needle after needle, praying that maybe this time- this time- my TSH will be in the optimal range and I can stick with one dosage for more than 6 weeks at a time. I hate feeling physically a lot older than 27. I hate looking in the mirror at myself and thinking, Miriam, what the fuck happened to you in the last decade? Where did that spunky spry go-get-em girl disappear to?
While I’m still coping with infertility, realistically, my bigger issue right now is my thyroid. I desperately need to find some Hashimoto’s or Hashi’s w/POF blogs out there. If anyone has any recommendations, I’d love them. It’s so frustrating to know that I can’t even begin to address any of the infertility until my thyroid chills the fuck out… I told Larry at lunch today, it almost seems like we should just start the adoption process now b/c I’m sure that will move faster than trying to get my body ready for IVF.
I’m tired of feeling like everything in my life is perpetually on hold right now.
Hi Keiko
I saw this link at the bottom of your current post and just had to click. I have been having problems with my thyroid as well, but I am glad to say it is now sorted out. It is amazing what modern medicine can do. I started at 4.6 then 2.2 and now 1.5.TSH.
How is your thyroid now? That graph looks awful. Good for you for saying goodbye to fat.. I’m sure it will help things as well.
Oh, huge hugs! Here from LFCA
A few years ago when I was first doing my R.E. checkup, they found I was hypothyroid. I'm pretty sure it was 7.something! We've played with the dosage for the past few years, but I haven't had nearly the trouble you've had. I can only imagine how frustrating that is, on top of dealing with infertility.
I was about 118 about eight or nine years ago also, and now am well, around 190. I wonder how much of that was thyroid, and how much was the cheeseburgers. 😉 But, one thing at a time…
Things seem to be finally coming together for me. I hope that happens for you VERY, very soon.
Here from LFCA.
I don't have Hashi, but I do get hit with silent thyroiditis. 4 rounds to date. Possibly the fifth in progress now– have to go give blood to find out.
So in the spirit of the comments above that suggest getting a real endo, I have one for you. Yes, right in your city. His initial wait may be on a longer side, but I think they fit in more critical cases sooner. He is one of the bigger shots in the field is my understanding, and autoimmune thyroid diseases are all over his publication list (yes, I just did a quick PubMed search– that's the kind of geek I am :)). Please email me, and I will be happy to share the name and other info. Oh, if it adds any weight, he was recommended by my MFM.
Best of luck. This is incredibly frustrating. And oh, the weight and the tired. Grrrrrr….
I have Hashi's as well, as do my Mother and so did my Grandma. We all three have had our share of mismanagement of it. It SUCKS. I firmly agree with an above commenter. There is a massive difference b/n an RE treating your Hashi's and a clinical endocrinologist. My RE actually referred me to my clinical endo, and I'm in love with her. They are there to get you HEALTHY. They're not so preoccupied with treatments and the money they're going to get from them etc. Sorry.. I'm still a little bitter. 😉 It took me 6 yrs to find a good doctor to help me.
One question I have is why is your dosage being upped when you are in the hyper range?? Hyper is very dangerous as you know. I would think they'd want to get that down quickly.
And yes.. it is WELL documented that there is a difference b/n generic and Synthroid. My Mom does horribly on generic, and my doc won't prescribe anything other than synthroid. A pharmacist friend explained it to me that while chemically they are the same, they are MADE differently.. packaged in a different manner as far as how the pill is made etc, and since levothyroxine is all about how your body absorbs it, that can make a huge difference.
Also, have you had ultrasounds of your thyroid to check out nodules and such? That's important with our disease too. 🙁
And I'm sorry, I haven't gone back through your info (saw this on L&F), but do you have any other endocrine disorders besides Hashi's? They often go hand in hand with others like PCOS. They dont' know why, but there's a higher incidence of Hashi's if you already have a repro disorder. And while for me, a lot of my crappy symptoms could be attributed to Hashi's, part of the severity and some of the symptoms themselves were a combination between the Hashi's and the PCOS I have. I know this b/c while I got MUCH better on synthroid, there was still a lot of up and down fatigue, some skin issues etc. But when I was treated on Metformin as well(though I have not showed up IR – the blood test isn't that good for catching IR), my health improved DRAMATICALLY once I stabilized on Met. I started ovulating regularly (though late) and got pregnant after an almost 4 yr struggle and many treatments.
And yes, I agree that the Free T3 can be an issue as well. I know there are ways they can handle that if necessary, but I have not had that problem.
If you'd like more info on what I've dealt with, my blog has tags for Thyroid and for PCOS that you may find helpful. Feel free to peruse.
All my best wishes. I have a lot of sympathy for this crap after what I and my family have gone through.
I use real Synthroid instead of generics and feels sooo much better. With the generics, my numbers were okay but I still felt like crap. Using the "real stuff" makes a huge difference. My husband, who is a scientist, says that the main differences are the fillers but that they can make a big differnce.
I hate HASHI!!! I can deal with being cold, foggy, etc… but the weight gain is just a mean, mean, horribly uncontrollable cruel joke! I have no recomendations about blogs, but I have read 3-4 books by Mary Shomon (sp) and they had some great info. You've been having a thyroid storm for while now, hopefully it will break soon!
I know it depressing, but it does get better when it finally balances! Hang in there!
*hugs* I'm so sorry things aren't manageable at all 🙁 So frustrating!
You're so strong *hugs*