Things We Have Learned

Important note: After many decades of success, Armour desiccated thyroid was sadly and shockingly “reformulated” in early 2009 by Forest Labs. They report increasing the cellulose and reducing the sucrose. As a result, patients worldwide report a return of hypothyroid symptoms as well as stress on their adrenals. Armour is not recommended by most.

We, as THYROID PATIENTS who have made the switch to desiccated thyroid such as Naturethroid, Westhroid, Canada’s Erfa Thyroid, compounded or other desiccated thyroid over the past few years, and worked with good doctors, have walked the path and learned the following. Take this info into your doctor’s office.

1. Labwork: At the beginning of the quest, it’s important to get particular labwork, which includes the TSH (to discern pituitary function, not to diagnose hypothyroid) Free T3, Free T4, two thyroid antibodies tests, and Ferritin. We have found the “thyroid panel”, which many doctors tend to do, to be useless, since they usually only contain the TSH and total T4, plus other labs which are not helpful. Also helpful can be labs for B12, Vitamin D and others. If you have digestive issues, the gluten intolerance labs can be helpful. If you feel absolutely lousy, checking for EBV (Epstein Barr Virus) can be good. See place to do labs below.
2. TSH lab test: Though the TSH lab test can be useful to detect a pituitary dysfunction, and though a high TSH can be revealing to your hypo, we have noted that it can also be overall useless with a flawed range. For one, at least 50% of patients who come on these sites report having a TSH lab in the one’s or two’s (i.e. VERY ideal and in range), yet with raging hypothyroid symptoms. Second, doctors tend to dismiss obvious hypothyroid symptoms if your TSH is anywhere in the range. Third, when you are on thyroid meds, dosing by the TSH lab can be an egregious mistake, since staying in the dubious normal range has repeatedly left even desiccated-thyroid-treated patients with lingering hypo symptoms. In conclusion, we have learned over and over that the most important labs are the free’s, and especially the free T3, the active and life-giving hormone.
3. Adrenal fatigue: Since a large sector of thyroid patients tend to have overworked adrenals due to compensating for undertreated hypothyroid from thyroxine T4-only medications, we have found it wise to learn the status of our adrenal functioning, since low cortisol, and even high cortisol,  can affect the way thyroid hormones get to our cells (or not get there). Knowing the status of our adrenals can prevent future problems as we try to raise our desiccated thyroid. Discovery Steps One and Two on the Adrenal Info page can give a clue. If there is any suspicion of adrenal fatigue from doing the above steps, it’s time to do the 24 hour adrenal saliva test (requires no prescription, but is good to share with your doctor) rather than a one-time blood test (which fails to detect levels at four key times during the day) or a urine test (which fails to detect when it might be low since it’s simply an average of 24 hours), or an ACTH STIM test (which detects Addison’s or Cushings rather than the middle range of adrenal insufficiency). If we find ourselves with low cortisol, it can be wise to work with a good doctor and start a treatment of physiologic doses of cortisol two weeks before we start on Armour, or to lower our desiccated thyroid if already on it. Additionally, if we find higher doses of HC aren’t doing the trick, taking Hydrochloric Acid or digestive enzyme supplements can help with poor absorption issues–the latter common with hypo patients. We have answered many questions about adrenal support here.
4. Desiccated natural thyroid: We have repeatedly experienced that desiccated thyroid like Naturethroid, etc. works FAR better than T4-only thyroxine medications! Why? Because we are giving ourselves exactly what our own thyroids would be giving us—T4, T3, T2, T1 and calcitonin. The difference has been stunning! We were not meant to live on a storage hormone alone. (Update: as of 2009, the brand name Armour has been reformulated, and many patients are complaining about a return of their former symptoms, sooner or later, plus new frustrating ones. Instead, patients are switching to Naturethroid or even Canada’s “Thyroid” until these problems get ironed out…if they do.)
5. How to switch: When making a switch to desiccated thyroid, we have found two successful strategies when we work with our doctors: one, to take our last dose of T4 (aka Synthroid, Levoxyl, Levothyroxine, etc) one day, and start on desiccated thyroid like Naturethroid, etc the next, as explained below. The owner of this site did it that way while working with her doctor. Or two, a patient can lower their T4 dose in half, and start on desiccated thyroid. But it will be important to continue lowering the T4 with each raise of desiccated thyroid to prevent an excess of T4. Desiccated thyroid like Naturethroid is 80% T4 anyway!
6. How much: Generally, we and certain informed doctors have found that a safe dose to start on is around one grain, which is 60 mg (or less for those with severely challenged adrenals). We then hold that for a week or two at the most to allow our bodies to adjust to the direct T3, then start raising about 1/2 grain every few weeks according to our doctors guidance. If we fail to raise from a starting dose within two weeks or less, our hypo starts to return with a vengeance due to the hypothalamus/pituitary/thyroid feedback loop. If symptoms persist on lower dose, and when we approach the 2-3 grain area, we have found it wise to hold our doses at least 4-6 weeks to allow the T4 in desiccated thyroid to fully build and show it’s T4-to-T3 conversion results. Failing to do so can cause a patient to dose far too high, with hyper symptoms to match, including a fast heart rate. It appears that most of us end up needing 3-5 grains at the minimum when we find our optimal dose, mentioned below.  Some are higher; some are far lower. You and your doctor have to play it be ear according to your individual needs and the removal of symptoms.
7. What to look for when dosing: To find our optimal dose, wise doctors dose by three criteria in no particular order: 1) the complete elimination of symptoms, 2) a mid-afternoon temp of 98.6, using a mercury or liquid-interior thermometer, plus a normal heartrate, and 3) a free T3 towards the top of the range, no matter how low it will get the TSH. The three criteria have to be in conjunction with plenty of cortisol, whether from healthy adrenals or cortisol support. (If cortisol is too low, we can hyper symptoms which need to be addressed). Dosing by the elimination of symptoms was done successfully for decades before the TSH came into existence in 1973, and we are repeating that success. The free T3 being in the upper part of the range is simply another guide (and we make sure that we do NOT take desiccated thyroid before our labs, which only results in a false high reading).
8. Results: We have learned that finding an optimal dose of desiccated thyroid has rid us of chronic low-grade depression; softened our hair and skin; stopped our hair loss; lowered our high cholesterol; removed the aches and pains that doctors told us was Fibromyalgia or Chronic Fatigue Syndrome; given us the stamina and renewed energy that we never had. It has improved bone density; removed headaches; and improved female hormonal issues. It has helped us get pregnant when that goal was desired. It has given us back our SANITY! Some issues take more time than others, but they do work out.
9. The use of T3-only: Many patients with ongoing health issues, or those with adrenal fatigue, can find themselves with too-high levels of Reverse T3. Making RT3 is a natural way for your body to clear out excess T4, so you natural convert the excess T4 to RT3. But with lingering problems or adrenal fatigue,  you can make far too much, which in turn stresses your adrenals, besides keeps you hypo. The solution is to be on T3-only, i.e. no T4 in the treatment, to remove the excess RT3. And until you identify and correct any other lingering issues–low B12, low ferritin, undertreated adrenal fatigue, gluten intolerance, etc–you’ll need to stay on T3 for awhile. Multi-dosing with T3 is very important, since you will have no conversion from T4 to depend on.
10. Strange symptoms on desiccated thyroid or T3: If we are already on desiccated thyroid or T3 and find ourselves with strange symptoms when raising it, it can be due to sluggish, low-functioning adrenals, which means low cortisol production. And since cortisol is needed to help the receptors on cells receive thyroid hormones from the blood, patients with sluggish adrenals and on desiccated thyroid can start having strange reactions to the medication as they raise. They can also find themselves with a high free T3 and continuing hypo symptoms, since thyroid hormones will build in the blood serum without adequate cortisol. Thus, we have found it wise, if we find ourselves in this situation when on desiccated thyroid or T3, to do the adrenal saliva test, or self-tests, or taking our temps, to help ascertain the sluggish adrenals. As mentioned above, we have found that a one-time blood test, urine, or a STIM test, is inadequate to discover sluggish adrenals.
11. Five reasons for problems with desiccated thyroid: For those of us who have had problems with desiccated thyroid like Naturethroid, Westhroid, Armour etc, it was due to four CORRECTABLE issues, in most cases: First, problems were due to being held on low introductory doses far too long, allowing our hypo return. We and certain doctors have learned NOT to stay on an introductory dose much longer than one to two weeks before raising. Second, problems were due to doctors who held us hostage to the unreliable TSH, even on Armour, rather than symptom-elimination mentioned above and the free T3. Third, problems were due to having low-functioning sluggish adrenals, which results in low cortisol. Cortisol is needed to distribute thyroid hormones to the cells, and without enough cortisol, problems develop that resemble hyper symptoms, such as anxiety, shakiness and other issues. We also tend to have a high free T3 with continuing hypo symptom if we have sluggish adrenals. We then supplement with physiologic, low-dose cortisol like OTC Isocort or Hydrocortisone or Cortef….and we can then continue with raising our Armour while on adrenal support. Fourth, problems were due to low Ferritin, which is storage iron. Low Ferritin appears to be quite common in thyroid patients and causes problems as we try to raise our Armour, and it also mimics low thyroid symptoms. We then supplement with up to 200 mg. elemental iron daily (and add Vit. E if we use Ferrous Sulfate since evidence says it depletes our E), and attempt to raise our Ferritin to 70 – 90 at the minimum, which takes time.  Fifth, problems can result from high Reverse T3 due to high or low cortisol, low ferritin, low B12 etc.  You can read good Questions & Answers about Rt3 from patient Nick Foot’s website. You can view the mistakes that patients or doctors make here.
12. Multi-dosing: Desiccated thyroid seems to work best when we MULTI-DOSE it– i.e. distribute it throughout the day rather than taking it in one big dose in the morning, the former which better replicates what our own thyroids would be doing—giving direct T3 throughout the day. We all experiment to find what works best for us, and generally, that means taking the highest amount in the morning, followed by a lower amount in the early afternoon, as an example. This will be even more important is a patient on T3-only, which is used to clear out excess RT3.
13. Desiccated thyroid and timing of labwork: We have found it wise NOT to take our desiccated thyroid before we do our scheduled labs. Why? Because the direct T3 peaks within a few hours after we take it, causing our free T3 to look high and give a false impression of hyper. Instead, we take our final dose the day before, then no dose before our labs the next day.
14. Desiccated thyroid in the winter: During the winter in a cold climate, we have learned that it can be wise to add a slight amount of our thyroid treatment, such as 1/4 grain, to our daily optimal dose. This slight dose raise can also be true if we participate in a strenuous activity in any season of the year, since the activity can increase the need for the direct T3. If we are on needed adrenal support, a strenuous activity or high stress life situation can dictate the need for a bit extra cortisol.
15. Doctors: Generally, we as thyroid patients have learned that Endocrinologists are often not the best doctors to see to get excellent thyroid care. There are exceptions, but overall, Endocrinologists tend to be excessively rigid about prescribing T4-only medications, and close-minded about dosing according to symptoms rather than the TSH. We have learned to find a better quality doctor. When we enter the doctor’s office, we have learned to approach the interaction as a team, and expect the same from our doctor. We live in our bodies; they do not. We have intellect and expect our doctor to respect our own knowledge, which this site will give a patient, just as we respect theirs. If we find that our doctors do not respect our knowledge and do not give importance to our subjective experience from living in our own body, we will seek out a better doctor.
16. Iodine: Some thyroid patients are reporting that the use of iodine has either helped them lower their thyroid meds, or has improved their adrenal function by removing toxins. It has been reported that many individuals have low iodine levels (which you can ascertain via an iodine loading test), and since thyroid cells are comprised of iodine, it can be an important supplement to consider if you find yourself low. Many patients use Lugols, a liquid form, or even more popular, Iodoral, pill form. Moving up to 50 mgs has been the recommended dose. The use of iodine also helps eliminate toxins from your body, especially bromide, causing symptoms (breakout on your face, sleepiness, headaches, etc) that do eventually go away. With the iodine, it’s helpful to be taking Vitamin C and Magnesium. Vitamin C helps to heal the NIS Symporters (pumps that pull the iodine into the cells and then assist in organification). Magnesium, with important enzymes in the cells, helps utilize and oxidize/organify the iodine. A warning to those with an active antibodies attack called Hashi’s: several patients report that the use of iodine has exacerbated the attack, so you will need to watch for that.  Others do well. Google “iodine” for more information and to see if it’s right for you. Good websites on iodine use: www.breastcancerchoices.org and www.iodine4health.com You can also find a good iodine group on the Talk to Others page.

To be continued…

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