Me and my kiddo

Me and my kiddo

Tuesday, February 2, 2010

Hypothyroid Issues: Sharing a Data Point

This blog is mostly for sharing parenting thoughts and fun life moments, but so many of those in my friend network have recently shared their thyroid stories and I like the idea of benefitting from each others' experiences.  So, here goes.

It started 13 years ago when I began feeling constant, mild throat pressure.  I spent two years going to ENT doctors who tried everything from muscle relaxants and acid blockers to steroids and antibiotics, finally one of them performed surgery to remove my lingual tonsils.  No change.  My labs remained normal.  They didn't know what was causing the pressure, but everything they could think of medically tested fine, including an MRI and CT scan.  It remained a mild annoyance.  When I moved to the Seattle area, my new primary care doc ordered an ultrasound which discovered thousands of tiny, "autoimmune" thyroid cysts.  I put autoimmune in quotes because I have no thyroid antibodies.  My lab work was still fine, the throat pressure hadn't changed, but at least I knew what was causing the feeling.  My doc said this was a case of waiting to see what happened because my thyroid was working well.  So, we have chronic throat pressure as symptom number one.

About two years ago, hair stylists started mentioning that my hair was falling out and my husband started noting handfuls of hair on my back after I combed it each morning (symptom number 2).  My hands and feet got more and more cold, and I saw bluish toes for the first time last year.  I was told I had Raynaud's and to keep warm (symptom number 3).  I'm not sure when I started having this odd head ache / sick feeling, but it has gradually progressed to occurring several times a week, although it always resolves with sleep.  I have also had significant difficulty getting to sleep and frequent wakening (although I fall back to sleep easily).  (We'll make that symptoms 4 and 5)  

Six months ago, my doc said my thyroid wasn't officially low, but we could try some T4 to see if it helped.  It didn't.  Over the last few months, thanks to friends reports ( -posted on - OEvolve- and more recently, I've been delving more deeply into the research and, now, I think I've been dealing with thyroid issues for at least 15 years.  I have read both Stop the Thyroid Madness: A Patient Revolution Against Decades of Inferior Treatment and Iodine: Why you need it, Why you can't live without it as well as the findings from multiple respected blogs.  I did a temperature trial and noted that my temperatures were highly variable (not just within one day, but from day to day) and always low (symptom 6, last one).

I wrote my doctor a detailed letter of the trial I wished to undertake which included both desiccated thyroid and cortisol.  She refused to write a prescription for the cortisol.  I am afraid to take the desiccated thyroid without the cortisol because adrenal issues could arise (link).     My lab results indicated freeT3/freeT4 both low normal and I continue to lack any thyroid antibodies.  I have been taking Iodine which seemed to make my temps warmer for the first week, but hasn't done anything since.  I think I may up it from 12.5mg to 18.75 (another half tablet).  

Considering high cortisol was documented, I am now primed with multiple questions for tomorrow's visit to the endocrinologist.  Based on my research, I want to get a ReverseT3 test and repeat freeT3 to see if that ratio indicates an issue.  I want to get an iodine loading test to see if that is a significant issue and the saliva cortisol test which has four collection times since cortisol can vary so much throughout  the day.  Finally, I want to get the opinion of a more mainstream doctor and likely, I will seek a second opinion from a doctor whom I know to be more focused on using compound pharmacies for treatments outside the norms.

So... that's my plan!  I'm sharing another data point and I'm hoping that I'll be reporting back with a full all's-well report.  This has been a stressful two months of research and especially the more frequent illness feeling.  It's very exciting though to be aware of the treatment tools which will hopefully resolve the issue :)


  1. You are amazing, Rachel! I had no idea this was going on, other than your mention of Raynauds. I also noticed you keep your house pretty warm - which I love. You stay so cheerful and upbeat even though you're not feeling good. All the best with getting this resolved.

  2. Also, you write like a scientist. This is so well written and organized!

  3. I'm glad you wrote this, Rachel. I am interested in your results with the cortisol test. I don't show any of the signs of adrenal fatigue that are listed in _Stopping the Thyroid Madness_, but I will be watching for the symptoms as I take the dessicated thyroid. Good luck!

  4. > "Finally, I want to get the opinion of a more mainstream doctor and likely, I will seek a second opinion from a doctor whom I . . ."

    I know from personal experience (with other inflammation problems) that sometimes solutions can emerge from unexpected sources, if not directly then synergistically.

    In the remote chance that this article might trigger a connection somewhere, I suggest:

    I have come to trust Dr. McDougall's recommendations generally, but even where I disagree with him I value his general clarity and bluntness.

    Dr. McDougall often recommends a diet change for many medical problems. (His clinic specializes in obesity and heart disease, I recall.) But interestingly here he says diet change can't provide a cure. He describes the treatments he usually recommends at this clinic.

  5. Maryallene: Thank you for the well wishes and kid words. I certainly saw this as something worth minimal focus when there weren't actions to take :)

    Kelly: I'm so glad you're missing the adrenal issues! The varying of my daily average temp so dramatically and the high cortisol make me much more wary of experimenting with the thyroid hormone (which has worked so well for our friends). The nice thing is that all of this is treatable stuff once the root cause is figured out!

    Burgess: Thank you so much for the references. Everything I've read about the TSH lab indicates that it just isn't sensitive enough to be the primary guideline for dosing, but I hadn't heard about concerns of contamination from desiccated thyroid. I know that it passes the same pharmacological tests as other medications in the U.S., but that isn't a guarantee. Thank you again for the resource and further information.

    Side note-
    These are symptoms which I'll share with the doctor as well.

    Other symptoms which fit but are less severe:
    hypotension (often 90's / 50's) and slow HR (often 60's)
    menstrual irregularities
    constipation (not with Mg supplementation though)
    Gradual weight gain and cholesterol creeping up while maintaining a healthy diet

  6. This is strikingly similar to my story. In addition to hypothyroid and Raynaud's, I also have had panic attacks since a child. Coping with social anxiety disorder is always a challenge, lol I've always wondered if there is a link from hypothyroidism to anxiety.
    Have you had any anxiety in your history, Lady Baker?

  7. Hi Jill,
    I managed to skip those although I did deal with persistent anxiety after my son was diagnosed with Autism. It took me a bit to get back to my mellow self and I highly recommend the book "Mind Over Mood". Now, my son can be sending the most scathing emotional flood my way and I've had enough practice that I can just stay calm and quietly acknowledge his feelings (and the results).
    Rachel (Lady Baker)

  8. I'll look into "Mind Over Mood," thank you Rachel! The powerful stuff that moms are made of-- it simply baffles the mind :)

  9. :) Thanks, Jill. I think we all have the ability to reach that strength! Not that moms don't have power, but I immediately thought of how much I admire the heroic accomplishments I've witnessed in my husband and a writer friend. Rational thinking is just so nurturing of a happy, productive life... I love seeing it make people happy!

  10. I would recommend desiccated porcine tablets to anyone with hypothyroid disorders and other* thyroid-related symptoms like problematic weight gain and low energy levels. Its' all-natural ingredients have been proven safe to support weight loss and metabolism-boosting benefits while improving thyroid health.