Today, I had my follow-up appointment about my labs that were drawn at the end of last month. I met with him in his office again – it’s always so weird to me. You usually only see that on TV or in a movie and it’s typically when they’re delivering bad news! But he just likes to do his “results” appointments in his private office, I guess!

Before I went in, I heard him in there discussing something with someone else and I kept hearing him say “Lyme”. At first, I thought he may be talking about my case and then I realized that someone else was getting the news. So sad. But at least he was going to start treatment on them.

Then I went in and he said well today is turning out to be my Lyme day! An NP who is shadowing him came in when he said that and she asked me to tell her all about my ordeal. So I went through the whole thing. He told her I had a “full-blown Lyme case” whereas the patient who was just in was suspected but not confirmed (because of the way his western blot test came back).

Then we started discussing my results.

Ferritin

We already knew my ferritin was really low but just in the 7 days since the previous test, it had dropped again. It was 25 this time. So he said I HAVE to be on iron. I have done much better about taking it since we got back from vacation so hopefully it will bring my levels back up. The only issue I’m having is forgetting to take my magnesium, vitamin D and biotin earlier in the night because they can’t be taken with the iron.

I asked how long I would have to take the iron to get it back up and he said at least another 5 months. In fact, he’s not even going to check my levels again until then! That was a little disappointing but what can you do?! I just hope that whatever is causing it to dip evens out by then as well so I don’t have to be on it every day beyond that. But he did say that when my ferritin is back where it needs to be, I will probably be able to lower my dose of thyroid meds!

Interestingly enough, it was 81.9 last January and by March was 39.7. During that time I knew I was having some issues with gluten but at that point, I thought I just had to stay away from wheat and I didn’t realize all of the other ways it could be in food (including cross contamination).

Vitamin D & B12

My vitamin D level is at 62 and that’s with 5000 IUs of it in supplement form daily. So he said I would definitely have to keep that up in order to maintain it. As for B12, my pharmacy has been backordered since before my last appointment. In fact, they just called today and said they had some in again! But just with me missing a shot for 2 weeks, my level dropped from 827 to 678. So he said I will definitely have to continue to take the shots weekly. I’m sure if it was tested again right now, it would be really low because I haven’t had one since he gave me one on the day I went for blood work a month ago!

Hormones

All of my hormone levels were really good, which was especially good on the testosterone side because it was really low last spring. He also checked my pituitary gland and everything was good with it. That’s a relief because there has always been a question with that possibly setting off all of the thyroid/adrenal stuff because pituitary damage is somewhat common in whiplash cases (from the car accident in June 2012).

Thyroid

My thyroid levels were not quite optimized on this test but I hadn’t increased the dosage yet when he did these blood tests. FT3 was 3.2 (range of 2.3-4.2) and FT4 was 1.16 (.89 – 1.76). He wants my FT3 at the top of the range and my FT4 at mid-range. He told me again about the schedule for increasing doses that he wanted me to follow. I told him I had already gone up to 60-30 (was at 30-30 when blood was drawn) but when I tried to go up to 60-60, I couldn’t sleep.

Actually, I’m not even sure I mentioned that on here? I went up to 60-60 when we got back from vacation and for four nights in a row, I continually woke up through the night and then was waking up between 4 & 5am and not able to go back to sleep. I dropped the dosage back to 60-30 and slept fine the next night.

I asked him if that was just an adjustment period or it meant I was getting too much? He said it was definitely too much and I did the right thing by dropping it back. So he feels like I’m likely just where I need to be on 60-30.

Unfortunately, that doesn’t help with the issue of my hair falling out! It is getting worse and if that was being caused by my thyroid, it should, at the very least, be slowing down now that I’ve been on an optimized dosage for more than four weeks!

Adrenals

Then he showed me my adrenal test results. In the morning when I wake up, it’s right in mid-range. Technically, it could be at the top of the range and be fine but at least I’m not at the bottom.

At noon, it is just below the range at 4 (range of 5-10), the afternoon reading was bottom of range at 3 (range of 3-8) and night range was 1 (range of 1-4). He said the night one wasn’t of concern because if it wasn’t low, I wouldn’t be able to go to sleep. But my noon and afternoon ranges need help! So he told me to start taking 5mg of Cortef around lunch again. He said I can stress dose as needed so I don’t need to feel like I have to take it every day.

I asked him if this could be contributing to my symptoms increasing so much in the afternoons and he said yes. He said that when my cortisol levels drop, my body says okay, we’ve got to crank this out and in order to do it, it grabs any available glucose. This could be causing a hypoglycemic reaction……and the “best” part about that is it results in BRAIN FOG! Could this finally explain why it always happens in the afternoon and seems to occur randomly (unless I’ve been glutened?!)

So he told me I need to make sure I’m eating protein at breakfast and then also try to add a protein snack as well. That along with taking the Cortef around lunch should help those symptoms to subside. Um, done and done! I will do just about ANYTHING to get rid of the brain fog!

The test also showed my DHEA is back in range (it was low last time) but my total salivary SIgA is depressed (less than 5) and normal is 25-60 with borderline being 20-25! Last March, it was 14 so it has dropped even lower. This can be because of a chronic deficit in cortisol. But it can also be tied to Celiac.

My progesterone is back in range and is 50 points higher than last time!

Celiac

Once again, he asked me about my diet and I told him it was fine but I had pretty much given up on eating out. He said that was probably best as it’s highly unlikely there are very many commercial kitchens that are gluten free! He did say that many of my symptoms point towards that (deficiency of B12, vitamin D and ferritin as well as typical gluten intolerance symptoms) but the treatment with Celiac and/or gluten intolerance is one and the same.

I asked if he thought there was a chance it would reverse since it didn’t start until the Lyme diagnosis and he said I was in uncharted territory so he really didn’t know. That’s SO refreshing by the way to have a doctor who says “I don’t know!”. He said because of the IgA proteins involved in both, it wouldn’t be surprising if one did cause the other and it also wouldn’t be surprising if it was permanent.

Having to stay away from gluten is really okay with me as in my research, I’ve decided it’s just not healthy any way. But I really hope at some point, I will be able to add back dairy. Time will tell.

So that was pretty much it for the appointment. I’ll keep my thyroid meds where they are and I’ll keep taking iron. I’ll add back Cortef as needed in the afternoon – which will probably be every day at work! And then we’ll see what happens.

Stopped Another Med

As for the acne and my hair falling out, I have another theory on that one. I’ve read one of my medications can cause acne and hair loss. I tapered my dose back on it beginning on the 22nd and my face suddenly started clearing up. I mean it was drastic! So today was my last dose (I’m totally off now) and hopefully the hair loss will stop too!

All Gluten Free

Last Friday, as I was laying my head down, I noticed the back of my scalp hurt. It felt like it was raw in about a 2 inch by 1 inch area. It even hurt to touch my hair in that area! I started trying to figure out what in the world it was and then started wondering if any of my hair products have wheat in them as my hair has just been weird lately!

First thing I found out is that cosmetics products are not regulated like food products are so they don’t necessarily have to put things like that on the label. Enter nightmare in trying to figure out what may be safe.

Last Thursday, for the first time in probably over a year, I sprayed a heat protector on my hair. With the way I flat iron my hair, the part of my scalp that was sore was where it had been sprayed. Coincidence? So I started reading the label and guess what one of the ingredients was? WHEAT! Into the trash!

Now technically, it should only cause a reaction if it’s ingested (which is why I’ve only been concerned about lipstick) but something obviously happened! So then I checked everything – shampoo, all of my makeup, hand soap, lotion, etc. And guess what? Whole lot of wheat! Again, I’m not eating any of this stuff (obviously!) but if I put lotion on my hands and then I eat something, am I glutening myself? Doesn’t seem too far fetched being that if I use a toaster that someone toasted regular bread in it can happen! So I switched everything. And let me tell you – finding gluten free versions of some of this stuff was NOT easy. But I do feel better since I made the switch. And I’ve noticed my skin is itching a lot less as well.

The other thing we did was to designate the foods I eat in common with my husband and my son (like Ruffles potato chips) as just mine. My husband is basically gluten free as well but he’s not as concerned with cross contamination and he does still drink beer (he basically does it just to support me). But my son has lots of foods that have gluten – he has an egg and peanut allergy so we just couldn’t take gluten away too if it wasn’t necessary.

But there are many times when he’ll eat a snack that has gluten and then reach his hand into the chip bag (as an example) that I’m eating from. Another source of cross contamination? Hmmm….so we started buying separate. And really it’s safer for him too because I do eat things with peanuts and eggs. It’s a win-win.

So far, so good. My brain fog went away last weekend and hasn’t been back (knock on wood), my period started (day 26 – so extra day!) on the 24th and has been lighter and my face is clearing up. It seems I’m headed in the right direction.

I have to go to NYC next week for a conference where they have sworn they can manage my food allergies. But I’m taking food with me just in case and I’ve already located a  Whole Foods that is eight blocks from my hotel. I just need to make it through that trip without getting glutened!

Whew, this was a LONG post! Wish me luck in the big apple!