The Aggressive Approach

I had a follow-up appointment with my family doctor today.  My other lab results were in. My anti-thyroid antibody levels are normal and the anti-nuclear antibodies test was negative. 

I declined medication to lower my TSH for now and got my doctor’s approval to try to lower that with exercise and acupuncture for now.  I will be ramping up an aggressive exercise routine for this purpose. I wanted to start tonight but it wasn’t meant to be so I will start tomorrow morning and work out hard at least 4-5 times per week. This is based on advice from Dr. Gratitude, who herself had to right some crazy TSH levels at one point. 

I learned at my doctor appointment today that getting in to see an immunologist (allergist specifically) will take one to two years. Yes, I said YEARS.  There is a shortage of them where we live and because they spend considerable time with each patient during the diagnostic phase they see fewer patients than other physicians so the waits are very long.

Allergists are the only folks who can do patch testing, which has the highest accuracy. And since my allergy immunoglobulin levels are very high (940 when the should be under 120), it would be nice to know to what I am allergic so I may avoid or limit exposure if possible.  As a compromise my family doc has ordered RAST food and inhalant panel testing (blood tests) after I undergo an aggressive steroid treatment over the next 21 days – see below. 

I elected the aggressive protocol over two other options that would have had me take over-the-counter antihistamines for a month and if ineffective then steroids or low dose steroids on an ongoing basis, for two months and then a break then another course of two months if necessary or a high dose for a week then tapered off.   The aggressive protocol has me taking 60 mg of Prednisone for 7 days then 3 days each of 50, 40, 30, 20 and 10 for a total period of 21 days. Then we retest my TSH as well as T3, T4 and IgE levels.  Then we wait a month and do the RAST and gluten testing as well as repeating the same thyroid and immunoglobulin levels. 

I am not thrilled to be taking so much Prednisone. But I chose this because I am noticing my body become more and more reactive to all kinds of allergens – my mouth itches and is rough inside almost constantly now even though I’m on an anti-inflammation diet. And I chose it because I hope it will reset my immune system and reduce the high levels of inflammation in my body that I am sure played a role in the most recent pregnancy loss and probably several others. 

And ultimately I chose this aggressive approach because now is as good a time as any to run this experiment and pray for relief and a new start down the road. I have to start somewhere. And it’s go big or go home time. 

Please wish me luck, friends. I may need it. 

 

 

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22 thoughts on “The Aggressive Approach

  1. Good luck hon!!! It sounds like a pretty aggressive approach for sure, but I like your thinking! Might as well hit this with all you’ve got! And hopefully you’ll also find out the source of these allergens!

  2. Hey, I’m glad your ATA’s and ANA’s were negative–that’s a “win”. Will say, my ATA’s were negative but I now require 100mcg of Synthroid to maintain a TSH < 2.5, but since you just suffered a miscarriage (and that may be the root issue) I totally support you trying to use a holistic approach to see if you can level yourself out. And as for the Prednisone…I've been on 60mg and that is A LOT, and it is going to suck–do you have much experience with steroids?
    The way I avoid the bloat is to keep carbs low, no sugar (which also helps control yeast, which tends to proliferate with steroids). I drink a lot of water. I take extra vitamin C (a natural diuretic). I try to exercise right after I take it, because it kicks up my adrenaline and I need to channel it constructively, or else I just freak out. So, hope any of this helps. The allergy testing sounds promising! I found that I am terribly allergic to *dust*, and at the time I lived in Vegas. Now that I've returned to the Midwest, all my issues have subsided. So, maybe it was the dry, dusty desert. Maybe you will get a good lead from it yourself. *hugs* XOXO

    • MLACS! How are you?

      Thank you so much for sharing your experience. I’ve done short course with and without tapering before but never 60 mg. 40 is the highest I’ve used to for asthma flares and I haven’t had one of those in several years. I’m not looking forward to the bloat and crazy/emotional feelings. I also get dizzy sometimes on it (likely not helped by the fact I have lower BP). I always do the extra water, never the vita C so or thought to synch exercise with timing – thanks so much for those tips. Today it’s made me nauseous despite taking it with food (I have to take it with some food or I feel like death). I hope I can get past that.

      I’m a little scared of it messing up my cycle – did it do that to you? I wasn’t charting when I’ve taken it before so I don’t know if it did but Other women have told me that their cycles went wonky on it. This was part of choosing to do this now – I’d like time to get my cycles sorted back out afterward if they go wonky on the steroids.

      Of all my options I think this was the best one right now because I know for experience the other two would not do a lot by this time when everything makes me react. Yeah, it will suck. But as you know being sick and having no idea why and being ignored about it has really sucked too. And what choices do I really have if I want to get things calmed the heck down? Sigh. I will keep telling myself it’s only 21 days. Only 20 more to go!

      • I’m good, feeling a bit moody at the moment but it happens–I’m bloated cuz I’m on antibiotics for the dumbest sh*t–Folliculitis! On my scalp…seriously, I went to the derm for a suspected cyst behind my ear, and turns out I have all sorts of swollen lymph nodes due to an infected hair follicle. *eye roll* At least it’s not cancer.
        As for your steroids–21 days is not very long–when I started at 60mg I tapered for 6 months. When taking high doses for extended lengths of time, I would skip menses, but they always stabilize once I’m on lower doses. The doses/length of time you’re using might not even affect you. But then, since your thyroid is also messed up, this also may affect your menses.
        I think you’ll be fine–may even feel better on the steroids or once you finish them. I appreciate the energy I have (on steroids) during the day & find I can push myself and accomplish a lot (it just sucks at night when I can’t sleep). Hang in there sweets. Also (you may be aware) eating plenty of protein & taking glutamine (an amino acid) helps, because corticosteroids are extremely catabolic and will eat away at your muscles (I lose weight on them due to this fact). XOXO

        • That’s very interesting you lose (muscle) weight on them because in the past (not sure about now) prednisone was prescribed in some eating disorder recovery programs because it stimulates appetite in many people (makes me queasy and have sleeping issues like you – case in point, I just watched that hilarious video link on your blog at 3:27 a.m.). It makes my brother hungry, my Dad is usually so sick by the time he is on them that he isn’t hungry generally. I have never polled any females before about this.

          Never heard of the glutamine. Do you take selenium and cal/mag when on them too? My mom had such severe early onset osteo from long term prednisone use (gee, do I have a family history ride with autoimmune issues or what?) in the late 60s/70s so when still alive she made my dad and brother do the cal/mag and selenium to offset the drug’s side effects there. I’m not taking anything for the prednisone yet and off most of my fertility supplements since early June to give my body a break since my immune system is so overwrought right now. TCM Doc’s recommendation. I’m only on D3 and prenatals, methyl folate, royal jelly (okay, that one is a leftover but vetted by the TCM Doc) and a B complex right now. I’m going to add C as you mentioned.

          An infected hair follicle? That is bananas! Glad it isn’t more serious but sorry you’re on antibiotics, I hate taking them. 😦

        • I think prednisone does make most people hungry, and if they need to put on some body fat because they’re emaciated, it will pack on some fat! Plus, I’m sure many people with eating disorders (if they were like me, with mine) have adrenal fatigue and can physically benefit from the *spark* to their adrenal glands.
          I do supplement with calcium, but never supplemented with selenium. I never had a baseline bone density test prior to steroids, so I can’t say to what extent I’m affected, but I’m sure there’s been damage done–they won’t prescribe me prednisone for my UC anymore. Recently they’ve started offering me Uceris, which is an innovative steroid that is *only* delivered to the colon–it’s not systemic and side effects are minimal. I picked some up recently as I was feeling sick, but ended up not starting the meds because I got better on my own (my acupuncturist told me to quit chelated magnesium. I did, and my colon relented). XO

        • Wow – that is great news (in relative terms, I know) about the Uceris. I’m glad you didn’t need it recently but it’s good to know you have an alternative that sounds much more pleasant. My mom had both hips replaced in her 50s due to prednisone – it’s so nasty long-term. But it works, so it’s hard to get around it for a fast fix. I hope it achieves that goal for me because my doctor didn’t have a lot of other truly effective alternatives.

          Hey – on the topic of doctors – I heard from our RE today to say sorry, he’s out of town and my email required a detailed response so he’ll get back to me next week when he’s back. This is so different than my old RE. He’s no Dr. Angel but he is a much more compasionate and connected doc than I’m used to in the money/baby-making business. 😉

      • Man, sorry your Mom went through that!
        SO glad your new RE is acting like a *human* and not a robot.
        Yeah I’m happy to have an alternative (hope it works when I need it). I don’t intend to do Remicade, Humira, Methotrexate (yes they would love to have me on it all the time. NEVER.) Azathioprine, etc. Tell you what–after I *hopefully* have a baby, if my colon acts up and steroids don’t work, they can take it out! Seriously, so over taking meds and enemas, etc. Because you can cure UC by removing the diseased colon–Presto! It would not be easy, but it would be worth it. XOXO

        • I like that thinking. WHEN you have that baby.

          It would be worth it. Different reason (cancer) but my Mom (didn’t she have enough sorrows in her life already, people?) had a good chunk of her colon removed and until the cancer came back (and took her life) it was quite livable.

          I’m glad about the RE, too. I’m so used to people not communicating after they have all of our money (we paid all up front including for next transfer so it’s worth nothing but reputation to him to be making time for us now).

    • By the way did you do patch or RAST (blood only) allergy testing? The RAST tests are not as reliable but it’s all I can get done at home in the reasonably foreseeable future. So better than nothing. Those tests won’t be done until mid-late August.

        • Patch testing – the reliable kind. RAST involves blood tests only and can be done by physicians other than a specialist (pro) but results can be less reliable (con). Considering the obscene wait for me to get into one here, we are stuck with RAST but I hope it is still informative. We are not testing right now because accuracy and reliability are even more suspect than usual given my IgE level and subjective experience of reacting to everything.

  3. Wishing you tons and tons of luck. Do you have any options for finding an opening sooner with the specialist? I mean, even perhaps out of state rather than waiting SOOOOO long?

  4. I think your aggressive approach makes the most sense! I’ve been on some pretty high doses of prednisone in the past (nearly 10 years ago now), and I really didn’t find it as bad as most people – so, I’m hoping you too have a decent experience with it. And, honestly, I think its a great idea to give it a try now and get it over with. Hopefully it works and gets your body back to normal.
    I have an immunologist as I have sever grass allergies (although not any longer thanks to 4 years of allergy shots). I too was told the wait time was 1-2 years, and decided to go on the wait list anyways. I got lucky as a new doctor opened a practice in my city so I ended up only waiting 2 weeks! So, I highly recommend getting yourself of the wait list regardless. (I have a lot to say about allergies and pregnancy, and could go on for quite some time, but ultimately it is my immunologists perspective that they do not cause miscarriages or pregnancy related problems).
    Anyways, I think it is awesome that you are so informed in your care and are taking the lead to ensure your treatment plan works for you.
    Thinking of you and wishing you the best with the prednisone treatment.

    • Thanks, I’ve been on prednisone before, just not this high a dose (for allergy-induced asthma attacks). Two immunologists just retired where we are – part of the problem! I may ask my doc to refer me to another city if she can, thanks for helping me think of that!

      I know my allergies cause inflammation. I firmly believe inflammation can jeopardize a pregnancy and there is much to support this in terms of recognized autoimmune diseases that are identified as RPL markers (all of those tests have been negative for me). So in my heart and gut I know this is related to the most recent loss, maybe more than that one. And my worsening allergies coincided with the 6 losses that I’ve had in the past year. My doctor said what you said – the immunologists would not be willing to accept that RPL could be related to allergies – which is why she discouraged the referral earlier when I asked about it as an option. I don’t need someone else telling me I’m mad or making stuff up so I accepted her suggestion at first. I still asked for a referral but it won’t help me in terms of TTC if it’s 2 years away. That ship will have sailed before that. I’d love to hear your thoughts on allergies and pregnancy if you want to share sometime!

      • I too agree with you about the immunologists and RPL. I think there must be some sort of a connection simply because everything is connected. That said, my RE, OBGYN and immunologist all tell me there is no medical link.

        And, I like your idea of getting a referral to a doc in another city if it’s possible. And, even if the TTC journey ends (hopefully positively) before you get in, at least you will eventually get in and will be able to see an expert.

        Anyways, I don’t have time to write much about allergies and pregnancy right now (I’m falling asleep as I type), so I’ll respond with a lot more of my thoughts on allergies/immunologists and pregnancy when I’m more awake.

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