I started graduate school last month with the intention of earning an MS in Human Nutrition. For my Biochemistry of Nutrition class I have to do a research project on a metabolic disease. Originally I planned to do one on mitochondrial disease but from my Pathophysiology class I’ve learned that mitochondrial dysfunction underlies nearly every chronic illness from autoimmune diseases to cardiovascular disease to Parkinson’s disease to Alzheimer’s disease. Now I plan to do it on Secondary Intracranial Hypertension, if my professor agrees. The causes of Idiopathic Intracranial Hypertension are unknown but there have been multiple risk factors found for SIH, including endocrine disruption due to pituitary gland dysfunction, hormone birth control, steroids, hyperthyroidism, and hypothyroidism. Endocrine disruption makes some, not all, SIH a metabolic disease.
I believe quite strongly that facultative hyperthyroidism due to improper/negligent medical care was the cause of my SIH. This post lists all the reasons I believe this. Unfortunately there is no way to prove it since I didn’t have many labs done in the five months I was taking the wrong dosage of thyroid medication (or if I did, I don’t have copies of the results).
In July of 2009 I started seeing a naturopathic “doctor” because none of the multiple treatments I tried with my Internal Medicine PA, even experimental ones like Viagra, helped relieve the “Fibromyalgia” (I usually call it mold induced myalgia now) and I was getting sicker and sicker. It culminated with my PA taking me off all medications and admitting she couldn’t help me. The ND could prescribe a promising medication I had researched, Low Dose Naltrexone, that my PA was unable to prescribe since it came from a compounding pharmacy. Unfortunately I allowed the ND to talk me into trying many more things, most of which made my symptoms worse or caused new problems. Even though my hypothyroidism was very mild and I’d taken a low dose of Synthroid for years without any problems, she thought I needed to take both slow acting T4, like Synthroid, and a fast acting T3 thyroid medication because my body wasn’t converting the T4 to T3 properly. It’s possible this is true since mold illness increases systemic inflammation and interferes with the function of the pituitary gland which signals the thyroid gland to produce more T4 and T3 with Thyroid Stimulating Hormone (TSH). Inflammation can also inhibit the body’s ability to convert T4 into T3. Not everyone with hypothyroidism requires a T4/T3 medication, but there are some health issues that make it a better choice. A full thyroid serum panel that includes TSH, Free T3, Free T4, and Reverse T3 can help a doctor find the best treatments for a patient. Thyroid antibodies can also be tested if an autoimmune disease is suspected.
Instead of switching me to a natural dessicated thyroid medication that comes in standardized doses from a pharmaceutical company like Armour, Naturethroid, or Westhroid, my ND prescribed an 80/20 T4/T3 drug from a compounding pharmacy. Here’s where the negligence comes in. I was taking 37.5mcg of Synthroid and I switched to 40mcg of 80/20 T4/T3 combination in mid-September. This breaks down to 32mcg of T4 and 8mcg of T3. The problem with this dosage is that T3 medications are almost 4x as potent as T4 medications. Most thyroid medication conversion charts equates 12.5mcg of T3 to 50mcg of T4. Using that conversion, I was prescribed the equivalent of 32mcg (8×4) T3 along with another 32mcg of T4 for a total of 64mcg, almost twice the dose I was taking before. If the conversion had been done properly, I should have been prescribed 25mcg of T4 and 5mcg of T3 (5×4=20+20=40). I know math is hard, but it is a doctor’s job to know how to prescribe medications at the right doses. This is doubly so if the drug is compounded and not standardized. This dosage mistake had huge repercussions for my health.
I don’t like to play “what if” games because it would drive me insane. There are too many decisions that were made either by me or my health care providers that contributed to the worsening of my health, from where I lived to what medications I took, but a dosage mistake is not the same thing as hidden mold or unforeseen medication side-effects. It is negligence and possibly malpractice.
At the end of December 2009, my IH headaches began and continued to worsen. Based on the location of the headaches at the top of my head, I thought they were thyroid related. My mom gets similar headaches when her thyroid meds are out of balance. I asked my ND to test my thyroid levels in early February 2010. She said everything was within normal range but I still wasn’t converting T4 to T3 properly. She convinced me to take the herb chaste tree to help regulate my period, which had been irregular and sometimes occurring twice a month since January. My health continued to decline and the headaches got worse. The problems with my period are also hallmarks of hormone/thyroid imbalance for me. Often that’s my first major sign that something is wrong since fatigue and muscle pain are normal for me.
By early March I knew the compounded thyroid meds were making me more ill, even if I couldn’t prove it; my fatigue and muscle pain were almost unbearable, I had severe sleep issues, I bled constantly, I lost weight very fast (over 10lbs in one month), and the headaches were uncontrollable. I finally saw my PA on March 12th and switched back to Synthroid at my previous dose of 37.5mcg. Of course it was too late by then; I already had IH. March 19th I tried a migraine medication in an attempt to stop the pain cycle. The next day the left side of my face and my left forearm went numb and the headache expanded to encompass my entire head. On March 23rd I started losing vision in my left eye. On March 24th I saw my PA and had an emergency MRI of my head. She talked me into trying an opiate in an attempt to stop the headache cycle. The MRI didn’t show any abnormalities so on March 26th I had an emergency appointment with an eye doctor. My eye pressure was elevated and there was bulging on my optic nerves indicating elevated cerebrospinal fluid in my skull. He diagnosed me with Pseudotumor Cerebri aka Intracranial Hypertension. Later that day it was confirmed with a lumbar puncture with an opening pressure of 35 (normal is under 25). 30cc’s of CSF was removed in an attempt to reduce the pressure in my skull and ease the four weeks of continuous headache.
I won’t go into depth about my experience with IH in this post since I’m building a chain of evidence that the IH and my thyroid problems are linked. It took several years for the IH symptoms to ease up and mostly disappear, but my thyroid problems weren’t over. In late 2011, I once again had issues with irregular periods despite doing okay on 37.5mcg of Synthroid since switching back to it in 2010. My TSH was too high, which meant my body wasn’t getting enough thyroid hormones. My Synthroid dose was increased to 100mcg. My energy levels were greatly improved for about a month and I weighed less than I did at age 16, but then my TSH dropped too low, which meant I was taking too much medication. My dosage was adjusted downward and I gained most of that weight back in the space of two months. In late 2012, I tried Armour thyroid, a natural dessicated thyroid medication that contains both T3 and T4 hormones. I didn’t do well on it and the IH headaches, which were mild at that point, got much worse. They eased up once I was back on Synthroid.
After a year of struggling to get my thyroid levels balanced with Synthroid I asked to try a T3 medication, Cytomel, alone in late 2013. By that time my IH symptoms were basically gone. I’d get an IH headache a few days a month around my period, but that was it. I was no longer on Nortriptyline for neuropathy nor diuretics to remove extra CSF, both of which were used to treat my IH. Within a few days of slowly increasing the dosage of Cytomel, I knew it was a problem. After two weeks the IH headaches were too severe for me to continue on Cytomel. I switched back to Synthroid and soon the IH headaches were gone again. My MD still wanted me to try both T4 and T3 medications since blood tests showed I wasn’t converting T4 to T3 properly. I have copies of that lab work showing it to be true. At that point I was taking between 93.75mcg and 87.5mcg of Synthroid. We dropped Synthroid down to 50mcg and added 5mcg of Cytomel twice a day. Even though the conversion of this dose was close to what I was taking of Synthroid (10×4=40+50=90mcg), once again the IH headaches returned. I dropped the Cytomel dose down to 5mcg in the morning and 2.5mcg in the evening and the headaches became bearable, though they were a constant presence. I’ve stayed fairly close to that dose since then though I still have to adjust the doses of Sythroid and Cytomel several times a year to find the best dose that keeps the headaches away, yet keeps my energy levels up enough I can function. If one or both of the doses gets too low or too high, not only does the IH headaches worsen, my fatigue gets worse, so do my PMS symptoms, and eventually my periods become irregular. Currently I’m taking 56.25mcg of Synthroid and 5mcg of Cytomel in the morning and 2.5mcg in the evening and I have a constant, yet mild, IH headache. I took 62.5mcg of Synthroid and 5mcg of Cytomel in the morning and 1.25mcg in the evening for several months but my fatigue worsened. Somewhere between 6.25mcg and 7.5mcg of Cytomel is my perfect dose, but I can’t cut the 5mcg tablets that small. I may ask my MD about trying a sustained release compounded form of T3 in 6.75mcg.
In the process of writing this, I realized that I’m having so much trouble adjusting my thyroid medications and keeping it balanced due to pituitary gland problems. I’ll have to ask my MD about this as well. I’m not sure there’s anything we can do to treat it directly, but it is something that mold illness affects and it’s the gland responsible for MSH production, and we know my MSH levels are much too low.
Anyway, all my experiences with Cytomel and how tiny dosage changes make my IH symptoms return made me go back and take a hard look at the compounded thyroid medication I was taking when the symptoms began. I’ve read a lot about hypothyroidism and how the body converts T4 into T3 since 2012, and I have a much better understanding of how my body reacts when my thyroid levels are out of balance. Too bad I didn’t have this knowledge before my health was ruined by IH and the treatments for it. Dealing with mold illness was bad enough without adding thyroid problems and IH on top of it. Without the lab reports or copies of the prescription, I don’t think I can prove any of my suspicions to the state naturopath licensing board, but I wonder how many other prescribing mistakes she’s made. We trust health care practitioners, especially if they call themselves doctors, to know what they’re doing. We literally put our lives in their hands. They should be at least be reasonably competent. If I can figure out dosing conversions after looking at a couple of charts online, a medical professional should have even better resources they can reference.