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!

It’s been almost three weeks since I upped my thyroid dosage to 60 & 30. Today I went up to 60 & 60.

I haven’t seen much improvement with the increase but I guess it takes a long time to really see it. Last week, we were at the beach all week and I totally disconnected from the internet (my phone and iPad were off all week). So you would THINK with the reduced stress, I would see some symptoms improve.

I actually felt pretty good most of the week. But my face started breaking out like crazy (even worse than it was!). I thought at first it was the sunscreen but now I don’t know. I haven’t had any sunscreen on in three days and I’m not seeing any improvements. We’ll see.

I took the iron up until the 3rd of September. I forgot it when I went out of town for work and then we left for vacation and I just didn’t want to take it. It throws my stomach all out of whack with cramping, etc, and….here comes the TMI part….it causes constipation. I decided I didn’t want to deal with that on vacation. I did notice that last week for the first time in a long time, it was normal when I went to the bathroom – I generally alternate between diarrhea or constipation. I started taking it again on Saturday night. With taking it at night, I at least sleep through the cramping!

The brain fog started after our dinner out on Wednesday night but wasn’t TOO bad. It just didn’t feel quite right. I sent my dinner back after it came out swimming in butter (after telling them I had a dairy allergy) and I’m not entirely sure they remade it before bringing it back out.

Then on Friday night, we went to a pizza place who claimed to have gluten free pizza and vegan cheese. So I ordered that and within an hour, I started not feeling great again. I really didn’t even make the connection then because what I ate was suppose to be safe! When we got home Saturday, I ate another piece and within just a little bit, the brain fog increased. Needless to say, the rest went in the trash!

I just really don’t trust restaurants any more. I’m so sick of getting sick on food that I should be fine with according to them! The brain fog could be thyroid related but it seems weird that it would come and go if that was the case. I can almost always tie it back to when we went out to eat or we cooked some packaged food at home that didn’t specifically say gluten free.

So as annoying as it is, I’m hoping it’s from gluten/dairy or thyroid. As long as it’s not Lyme, I’m a happy camper!

I had my appointment on Tuesday and everything went well after he finally made it to my exam room. I love that he takes up so much time with his patients but that also equates to a lot of waiting sometimes!

He asked me how I was doing and what has been going on since the last time I saw him. I told him about the Rocky Mountain and Ehrlichia diagnosis and why I didn’t believe I really had either of them. He agreed with me after I finished all of my explanation.

Then I gave him my current symptom list and told him if he could just make the brain fog go away, I would live with everything else on the list (and it was a full page). He handed me back his own list of hypothyroid symptoms and said “you match this list exactly”. I looked over it and he was right.

So then we started looking over my latest lab results. Before I went to see him, I had gone through and written notes all over my reports. “This marker could be low due to 1, 2 or 3” or “This low marker combined with this being mid-range means XYZ”, etc. He was reading all of my notes and said “Wow, I’m impressed that another doctor took the time to actually write out all of these notes and didn’t use conventional medicine standards to interpret some of the results – these notes are right on!”

I got a big grin on my face and told him the notes were mine and based on my research. 🙂

He asked me how I was doing on my gluten free diet and I said just fine and I’ve gone dairy free as well. He said you’re better woman than me! I just laughed but had to admit that giving up dairy was WAY harder than giving up gluten.

I can’t remember if I have mentioned this but when I went to my regular doctor about the rash, the NP asked me if the pulsing in my stomach had always been so obvious. I was like I don’t know, I guess? It is really obvious, you can actually see it pulsing when I am laying down. So I asked him to check it just to be sure it was nothing to worry about. He asked me to stand up and said “Well, you’re skinny so it’s going to be much more obvious with you anyway”. Wow, you probably could have seen my smile from a mile away – I have never had a doctor refer to me as skinny!!

He checked it and said it was fine, especially when paired with my blood pressure, which is low. Then it was time to work out a new treatment plan.

Anemia

My ferritin level is 26. From my research (and he agreed), it should be above 50 at a minimum. My total iron binding capacity was also below the optimal level as well as my total iron. These numbers were all “in range” but he said just because it’s in range doesn’t mean it makes you feel as good as you could if it was different. If you’re in school, 70 & 100 are both passing scores but the student who made 100 obviously grasped the material better than the one who made a 70. Even though they’re both passing scores it doesn’t mean the 70 is good or where it should be.

Makes sense to me! So he told me about a supplement to start taking called Hema-plex. It has Vitamin C in it so you don’t have to worry about drinking/eating something with Vitamin C when taking it. It also has B vitamins, folic acid and a whole list of other stuff. It’s plant based so it’s suppose to be easier on your stomach. I’ve taken it twice now and so far, so good.

Hypothyroid

He said I am definitely showing all of the signs of being hypothyroid. I told him my biggest concern was with the brain fog because that was a major symptom for me with the Lyme. He said he absolutely believed I was having classic thyroid symptoms and it wasn’t Lyme related.

He said he wants to increase my dosage of thyroid meds gradually. Right now, I take 30mg of Armour in the morning and 30mg in the early afternoon. He told me to dose up to 60mg in the morning and 30mg in the afternoon. Then after a few weeks, go to 60mg and 60mg. After a few more weeks, if I still feel the need to increase, then I can go up again to 90mg and 60mg.

I reminded him that previously when I was taking 60 & 60, my levels went crazy and he backed me off. He said that I was on Cortef then (for adrenals) and it augments the thyroid meds. So you don’t have to take as much thyroid medication. But when you remove the Cortef (which needs to be done if possible) then you generally have to increase the thyroid medication again to stay in balance. My dosage has been DECREASED since I stopped Cortef in July so that’s probably why I’m having all of these symptoms again.

He also wants me to do a saliva test again just to make sure that everything is in line there once and for all. I still haven’t started it. I will probably do it this weekend – it’s easier to do it at home versus at work.

Finally I asked him about B12 shots. My pharmacy has been backordered and I haven’t been able to get it. And the only way my B12 level has stayed in range is with a B12 shot every week. He said he had them and I could get it after he drew blood for all of the blood work. I thought I may bypass that since I had just had some levels drawn but no dice! I think he ordered a bunch of other stuff because she drew 7 vials of blood.

When I went back to the room to get my shot, I sat down on the table when she came in. And she said oh no, this goes in your butt/hip area. I said okay, I usually just do them in my arm at home. She gasped and said doesn’t that hurt? I said yes and showed her the bruises on my arm. She said no, no, no….you won’t even feel it when I do it here. And sure enough, I didn’t feel ANYTHING. So guess where my shots will be from now on? And why didn’t anyone tell me that?!

So now to start upping my meds. I went to 60mg in the morning on the Armour starting on the 27th and I started the iron on the 28th. I’ll wait two weeks before I up the Armour again. The thing that tends to go away pretty quickly when my dose starts getting to the right level is my hair falling out. That started again a few weeks ago and I was so disappointed. I’ll be happy to have that stop again! And hopefully, the brain fog will get straight again and I’ll quit waking up constantly in the middle of the night. I’m also hoping my stomach will get straightened out and I can possibly add back dairy!!

I go back to him on September 27th for him to see how I’m doing and he’ll go over all of the results from this time – the saliva test for adrenals takes forever to come back! When I heard I was going to have to wait another month to get results, I was very happy I had the other blood drawn the week before!

We’ll see how this goes! Hopefully the increase in meds will take care of everything!

Yesterday, I received a copy of my labs in the mail. He had scribbled notes all over them and is changing my meds and adding another supplement. Back to the vitamin shop AGAIN!

Anyway. He said my thyroid is overly optimized now and my adrenals are as well. So he dropped my afternoon dose of Cortef and reduced my afternoon dose of Armour Thyroid by 1/2 grain. He also said my testosterone is low and he wants me to supplement with something called 7-Keto DHEA at 25mg. I’m not educated on hormones at all so I’ll have to do some research on that one. My DHEA was low as well but the notes say that could be due to the Cortisol levels being a little high.

I got the results around lunch time yesterday so I went ahead and adjusted my dosage of the meds. Well, actually I called the pharmacy first to make sure I could just drop a dose of the Cortef all at once and he said it was fine.

All of my markers for other autoimmune diseases were negative as we expected that they would be. I showed negative for gluten as well but low on another test. The notes say that could indicate a false negative on the gluten test. Added to the fact that I haven’t been eating anything with gluten in it and that test was pretty much a waste.

I’m not feeling all that great today but I figured it may take a bit to adjust to the difference in dosage. And my period is suppose to start soon which always brings with it a few days of feeling like crap. Hopefully it’s just a few days this time because I have to go out of town for work next week.

I may try to make an appointment with him to discuss the results but I haven’t decided yet. I think we’ll just see how this goes first.

Today was my follow-up from my January appointment with my new thyroid and adrenals doctor.

The first thing I wanted to discuss was the fact that the cardiologist blamed the rhythm on my thyroid medication. He was irritated with that statement (at the doctor, not me) and said that the thyroid meds can cause a faster heart rate if you’re getting too much but they don’t cause a change in rhythm. I’ve had tachycardia for quite some time so I don’t think the thyroid medication that’s only been in play for a few months can suddenly be blamed for that part of it.

We discussed my symptoms and I let him know that I had not really been able to tell much difference with increasing the thyroid medication. When I saw him in January, I was only taking 1/2 grain in the morning. Now I take 1 grain in the morning and 1 grain at mid-day. As I continued to go over my symptoms, he said he wanted to run more testing.

One thing he wants to test for is other autoimmune diseases including Lupus, RA, MS and a few others. So he said he would run some markers for those. He doesn’t expect to find anything but given all of my symptoms, he just wants to be able to rule those out. Fine by me.

Next, we talked about making sure my thyroid and adrenals are optimized so I need those tests again as well. You usually don’t do the saliva test for adrenals while you’re on medication but he said that it would just give him an idea of how my body is using the medication. So he sent me home with the saliva test to do. I’ll do that one day next week and send it off.

He is also going to test my hormone levels as he said those being off could have an effect on the way I feel. And finally, he’s going to test for gluten allergy. But because I haven’t been eating any, it may not be an accurate test.

He drew blood for all of the tests and said he will just send me my labs with notes on any adjustments he wants me to make via mail. So now I just get to wait for more test results.

Let the fun continue….

Oh my gosh, this appointment was so completely worth the wait. I FINALLY was able to see the doctor who I made an appointment with last September about my thyroid and adrenals.

He was so nice and he spent over an hour talking to me. He explained everything and I asked him a million questions about thyroid, adrenals, gluten, and, of course, Lyme. Best of all, he didn’t freak out when I mentioned I have Lyme disease. In fact, he’s treating several patients with it! I was so excited when I heard that, I could have jumped up and hugged the man. This gives me another alternative if my ID doctor drops me after 12 weeks! And he said that he treats for a minimum of six months, longer if needed.

As we were going over everything, he said he agreed with my Cortef dosage for the adrenals and he would have dosed the same way based on my tests from last October. He didn’t, however, agree with my thyroid dosage. He said I could get the same effect if I waved the bottle under my nose every morning! LOL

So he gave me a new prescription for it and I will add one pill every two weeks until I get to four pills a day (1 grain in the morning and 1 grain mid-day). He also reviewed all of my supplements with me and made a few tweaks with them.

Then came time for more blood tests. He’s checking thyroid again as well as a ton of other things. I asked him if he would check my vitamin D levels again since I’ve been supplementing that for a while now and he said he would check anything I wanted to have checked. Have I mentioned how much I love him?! When it was all said and done, he took 8 vials of blood so that should be some pretty extensive reports!

He also agrees with my other doctor that the adrenals will likely turn around once the Lyme is under control. It’s possible the thyroid will as well but not as likely. The same goes for the gluten – it’s going to be a wait and see kind of thing. He’s going to test me for gluten intolerance so we’ll see how that ends up coming back.

I go back in eight weeks to have my levels checked again to see how my body is reacting to the changes in my meds. He’ll send my blood tests by mail with notes on them of any additional changes that need to be made.

All in all, it was a good day on that front. Now, back to the ID doctor tomorrow for a Lyme follow-up. I’m not expecting great news there.