I've had these ups and downs physically the past couple years where I become exhausted for a few weeks, but then I get better again...never totally "normal" but functional. Well, then I got pregnant (despite efforts to the contrary) and was doing okay till around Thanksgiving time when I had another down that I have yet to recover from. I've been practically bedridden since then and unable to function. Seemingly simple things you wouldn't think of requiring much energy can do me in for the rest of the day...not exactly good for a sahm with 5 young and homeschooling kids and another on the way. I also have a whole bunch of wonky symptoms to go with it. I'll give the history behind it, but I literally don't trust the local OB's with my liife or LO's...and if it weren't such a logistical nightmare to fly to Seattle to deliver (with young kids at home, dh working, etc) I would do that in a hearbeat. Guess I should say we live in SE Alaska on an island you can't drive onto or off of...closest larger city is either Juneau (medically equivalent of here) or Seattle and both require a flight, housing, etc. There is one hospital (decent overall) and one OB clinic. I can't legally do homebirth (and there isn't a homebirth midwife here anymore anyway), and now with a major complication I'll explain below, I have to be where they can give me specific medicine and treatment during/after delivery should anything go amiss.
Well, when I first realized it wasn't going away this time I brought it up to the CNM at the local OB clinic (there's only one clinic and one hospital here) and told her I thought I had adrenal fatigue. She immediately suggested I go on antidepressants. I told her repeatedly that I wasn't depressed (been there before) but was physically exhausted. Example: I WANT to stay up and watch a movie with my family, but towards the end I'm so physically exhasted that I have to lie down and can't finish the movie. That was the end of the appointment. She tried to convince me about 3 more times and I said no each time. Hello! Not depressed! Aside from the emotions that come with being sick (and while PG), I'm doing fairly okay right now emotionally. Better than I'd expect, actually.
So I saw the "natural-minded" OB two weeks later. She made this big show of sitting down and "getting comfortable because it was going to be a long story" and then interrupted me after the first symptom I'd brought up (didn't BOTHER to listen) and told me I was wrong, it must be that my vitamin D is still low. She was exceptionally rude, ordered a re-test, and sent me on my way. My vitamin D was indeed still low, but not severely low (everyone's is low here) and she kept saying it was like a hormone and would make my aches and pains go away. Well, I didn't have aches and pains then! Now is another story, but that's totally baby-caused. She upped my 4000 IU's a day to 6000 IU's vitamin D and that was that.
At this point no one is listening and I know something IS wrong. The more I learn the more I think I'm closer to addisons disease and the more it sounds like I had an actual adrenal crisis just hours after my last delivery (that of course went untested, untreated, and undocumented despite the severity of the symptoms because the nurse took my baby and left me there to "sleep it off"). I decide to see my general care provider, a doctor of internal medicine that also does chinese medicine and accupuncture. She knows little about what I think is going on, but I know she will listen and she was more than happy to order a bunch of tests. CBC, ferritin, metabolic panel, thyroid tests, etc. My OB's wouldn't even check for anemia or thyroid labs --what kind of quackery is that!?!
Those labs come back and some of them were wonky but she didn't know what to make of them. My ferritin (body's storage iron) was literally on the floor (should *ideally* be upwards of 60 and mine was 4.8) so I was started on iron supplements. FWIW, I totally recomend the whole-foods/raw ones...I've had NO constipation issues with these. When the last of the labs finally come back (about 3 weeks after starting the higher vit D and Iron supplements) she says she doesn't know what to make of it and will call me in 2 weeks to see if I've had any improvement. In that 3 weeks the only improvement was that I had my appetite back. Good, but still not acceptable! I wasn't willing to just wait another 2 weeks with no more answers, feeling horrible, and unable to function.
So I find one of the best endocrinologists on the West Coast (in LA) and think, what can it hurt? I send him my labs, medical history, and symptoms list. In the body of the email I briefly explain the lack of help locally, the treatment they have me on (iron and vitamin D) and ask if he can see anything else treatable because I still feel horrible. I explained that I'd be more than happy to fly there tomorrow if he could help but that I didn't want to do so just to be told we were already doing the right things (I was 33 wks along). I got a response from his office that day saying he could help me, he saw something else that needed looking into, and could I get there Tuesday for a 5:30pm appointment? Mind you this was Wednesday evening by now. I started bawling, honestly.
I'll basically skip to the end with the endo. He says I'm obviously hypothyroid and that has serious risks to the baby in pregnancy when untreated. He believes it is my pituitary that is causing it, and that my "episode" shortly after my youngest's birth sounds like Sheehan's syndrome (where due to blood loss or in my case, a major drop in BP that limits blood supply to that area, you basically end up with a stroke to the pituitary gland). That is likely why I had issues breastfeeding my youngest, why I've felt horrible for so long, and why everything is going crazy right now...the pituitary pretty much regulates all the other hormone production and glands throughout your body. Obviously I still have some estrogen, but there were a number of hormones he thought I was low on aside from just thyroid ones. Most of that testing has to wait till postpartum and he sent me home with all kinds of lab orders, including an MRI to check my pituitary, etc.
I had the "now" lab order drawn as soon as I got home. I went to my OB appointment on Monday and the OB could have literally cared less about what was going on! I forgot to mention I'd seen them probably two more times since this all started and they wouldn't talk about my being sick, etc. I told her what the endo thought and she asked if I'd hemmorrhaged but that was it. Nothing about treatment, delivery implications, etc. Just nothing! I also said he'd ordered thyroid tests again and she went and looked at it on her computer, didn't tell me the numbers, said I had high antithyroid antibodies but that my hormone levels were all normal. End of discussion, send me on my way.
It took me 2 days to get the results because med records was closed for the holliday and they refuse to release labs to you through any other means. Turns out my thyroid labs were WORSE and my FT3 which had been within normal ranges before (it was my FT4 that was really low before and has now dropped a tiny bit more) was now below normal. She said they were all fine! I forwarded it all on to my endocrinologist (the hospital had only sent two of the results) and will be getting a full report this weekend.
So here's the deal. These OB's wouldn't even check for anemia, don't care that I can't function, and now don't care about my pituitary disfunction. If it has affected my adrenal function there is a 45% maternal mortality rate at delivery untreated and I've already beaten those odds once. You'd think they'd atleast try to cover their butts! It doesn't make me feel better that we could sue the pants off these docs should something go wrong. I mean, it may not happen, my adrenals *may* be fine, but the fact is we won't know till after delivery. I'm 35wks 1 day now.
I have to decide whether to even try breastfeeding or not. The endo left that up to me but said to be prepared for it not to work as prolactin is the first hormone that goes. Add to that my kids' milk soy protein intolerance that requires me to cook from scratch when breastfeeding (which I definitely don't have the energy to do) and at most I could breastfeed so baby gets colostrum WHILE I'm in the hospital. Still not sure if it is worth trying, though, because I don't want the extra strain on my body of my breastmilk trying to come in, even. We do have goats and are prepared to use the "Nourishing Traditions" raw goatmilk formula (what I switched my youngest to when BF didn't work out), so we have a very healthy alternative to use as opposed to a corn syrup and chemical-laden OTC formula. Then again, if I do FF from the beginning, I'll likely have to fight the hospital on using raw goatmilk formula. I don't mind that fight, just don't have energy to actually "battle," you know? Not sure what to do. If I life were simpler it would be simple! HA ha ha...
What would you do with all this? Camp out in another state for a few weeks to deliver? I don't have anyone that could watch my 5 homeschooling kids durring the day for that long. DH could take that time off, but then he wouldn't have any for after the baby is home and I'm likely to be sick like this for another couple months because we have to first have the testing come back and then get into the complex mess of trying to replace and balance whatever hormones are affected. Between a rock and a hard place here...So yes, I'm ranting and complaining!
If you read this huge book, thanks so much for listening. I've been debating posting for so long. I know that chances are it's just going to be me whining and others sympathizing, but I guess the closer I get and the more I deal with the OB's, the less I trust them. Is there some kind of option I've missed? Any ideas? Brain fog and short-term memory issues (comes and goes) are part of my symptom list and caused by these problems so I guess I want the reassurance that I've atleast considered all the options. Heh, funny that I'd been seriously debating a UC at home before all this happened. Not an option now, though my level of care would likely be better! ;)
On a positive note, we did just order our Klean Kanteen sippys (we'll use them as bottles --they're great) and just ordered all my fabrics, snaps, etc for newborn cloth diapers. Girly minky is SO fabulous! Luckily I have a friend in town that is a cloth diaper guru and sells on etsy, she said if I bought everything and cut it out, she'd sew it together. She showed me how but it would take me forever and I probably only have the energy to sit up and sew about one diaper a day right now...not sure I'll have enough days to get a newborn set done that way! I am glad, though, and can't wait for the cute fabrics to arrive and for them to be on a cute little girl. I've never used cloth on newborns before, but we love our pocket AIO's. These will be AIO's but definitely not pocket ones as they're so tiny! People in town would think I was nuts being so excited about cloth diapers. Hmm...will have to dress her in dresses and baby legs to show them off more. Fuzzy baby bum, yay!
Wow, sounds like you need to be somewhere where the docs will listen to you! I don't have suggestions on how you will do this logistically, but you sound like you have made the flights/childcare work before, just not for several weeks at a time. Do you have family/friends in the area that can help you with the kids? I hope you are able to get some help, and have fun with the new dipes =).
I read the whole thing. I'm sorry you're going through all of this. I have no advice to add, but just wanted you to know that I watched my own mother go through this type of treatment for many many years and still has not been able to have a diagnosis made. Her symptoms, while different to yours, are still not leading to a diagnosis for her and many times she has also been accused of being "depressed". It's a frustrating road.
You are in my thoughts.
30 years old, part time , Living in Australia with my DH and with IVF bubba #1 after a long long time of ttc. Very grateful we've made it this far. Due March 2012
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First, I'm really really sorry you're not being supported by your doctors and cnm. The treatment they are giving you isn't really treatment, it's neglectful.
The first thing I thought when I started reading is that it sounds like hypothyroid and adrenal fatigue. I don't want to take up too much time telling you my story but I dealt with the same thing after my 2nd and 3rd sons were born. I lost a lot of blood with my 2nd son, and that started the issues with my thyroid. After my 3rd was born, my body literally crashed. I was completely unable to function and my thyroid was completely useless. Even though I was exhausted in every sense of the word- I still couldn't sleep because my adrenal glands were trying so hard to cover for my thyroid that I was feeling never ending anxiety and adrenaline. After a while, my adrenal glands crashed too and after a lot of searching found a really great Naturapath Dr. who immediately started me on adrenal nutrition (supplements). I got my blood tested and it came back with low ferratin, low iron, thyroid antibodies off the charts (over 1000) and thyroid levels that were off but not super bad. If I would not have had the other levels checked, another Dr. could have easily passed off my concerns with a slight thyroid problem and maybe given me the lowest dose of hormone or maybe none at all. So I'm glad to hear they checked your antibodies too! I don't understand how Dr's can pass off symptoms so easily when a patient is clearly struggling. I can't tell you how many times I've read that a good doctor will pay attention to how you FEEL more then the thyroid numbers.
All that to say, I understand. The level of fatigue is relentless, like a heavy weight or some kind of soul sucking monster eating the life right out of you. I wasn't depressed either, I was just freaking TIRED! I had counselors tell me I was depressed, and wanted me on meds but I knew I wasn't.... heck maybe I started to get depressed from the lack of answers and help .... but the tiredness came first.
It's true, having thyroid issues in pregnancy is not good, hopefully they've done a good job watching your little one in utero and making sure that everything is okay. How is your babe btw? I honestly can't believe they've been so neglectful.
Some ideas I had- Is there any way at all you can see another doctor? Is there a midwife (licensed or not) that can help you with delivery? Can you do a search for underground midwives? Is it possible to have the Endo treat you and mail you any supplements and medications you might need? Or even a different doctor? My Dr. will mail me anything I need, so it doesn't hurt to ask!
My personal desire was for a Dr that could address ALL the needs of my body. Can you find someone like that who is willing to work via email/phone? The Vit D is great, but you need something for your adrenal glands and of course something for your thyroid. There are several other supplemental hormones that play into the endocrine systems that you could take that will also help. Perhaps a more holistic Dr can help you find the proper ones for you. The longer you wait to treat some of these things the worse they could potentially get. Also, anemia is no small thing. If left untreated it can progress to more serious conditions... especially if they don't know what KIND of anemia you might have. I would start to self treat with a really good tincture that has dandelion, nettle, yellow dock and alfalfa. The herbs help you absorb iron and hold onto it. You can find a tincture here called iron care extract http://www.mountainroseherbs.com/extract/combin.html Another thing that came to mind is maybe you can try cutting out Soy? It's known to be bad for the thyroid and it turned out I am intolerant to all soy products. Makes sense!
Try to get your body as healthy as you can in anyway you can before the baby is born, then really keep up once it's born. I don't know about the breastfeeding for sure, but I think that if your body is being taken care of then you should be able to breastfeed just fine. Even part time is good! I did UC with my last and plan to again so that is something I would personally choose, but I understand why you wouldn't want to. I think my next step would be searching for that midwife or getting the proper care from another Dr. before I had the baby and planning to ditch the one you have right after baby is born.
Good luck with everything, there are answers and it can/will get better. Don't let anyone ignore what's going on, you (sadly) have to be your own advocate in these circumstances.
here's a cool website with some validating info http://www.stopthethyroidmadness.com/
Lisa- mom to 3, expecting our 4th in March