How Do You Know When to Increase?

I am writing this post on the day before Mother’s Day because I get the honor of having my daughter, her husband and my grandson with me tomorrow, Mother’s Day. What a great gift she is giving me as I know my daughter hates getting in the car and traveling across town but she is doing it to honor me and that makes me feel very humbled and grateful.

On bold moves

This week I made the bold move of increasing my T3 dosage. To many that may seem like no news. For someone like me who went through an entire year of incremental increases of T3 gradually exceeding the dose my body could tolerate it is a bold move indeed.

I will try to provide a short timeline for those who are interested otherwise skip down to “Along came T3”. I started my T3 only in April 2010. I decided to try T3 only because nothing was helping an irregular heartbeat I had suffered with for about a year prior to starting T3-only.

When I was first diagnosed with hypothyroidism about 15 years ago I was prescribed what I now call Syncrap, T4-only. Then around 2005 I got tired of always needing to increase my thyroid meds and stopped taking them. Just for the record, that was not a good idea. This in turn eventually caused my adrenals to burn out, a.k.a. adrenal fatigue. Finally in about 2007 I started seeing Dr. Robert Bruley in Linden Hills, MN. He put me on compounded T3 and T4 adjusting the T4 according to my symptoms but keeping the T3 very low.

I stayed on T3/T4 for a year or two but my heart continued to give me troubles. I knew from my symptoms that this was not a weak heart or blocked arteries. It would come on at certain times of day and certain times of day it would be non-existent. Exercise didn’t bring it on, stress didn’t bring it on but when it came on it was so severe it would make me cough as if I had asthma.

Finally in late 2009, I convinced Dr. Bruley to let me try Armour. I felt a drug that supplied me with T1, T2, T3 and T4 was superior to one that was mostly T4 with a tiny bit of T3. I was probably correct but it still didn’t solve the problem. My palps were disturbing but thankfully not life threatening.

Along came T3

Then in April of 2010 I took a really bold step and started T3-only. I did so without Dr. Bruley but with the wonderfully helpful people on a thyroid forum who looked at my RT3 blood test and told me I had thyroid resistance and needed T3-only to clear the T4 that was blocking the all important T3 from entering my cells. These folks had all been under treated by allopathic doctors and some had come very close to dying as a result of T4-only thyroid drugs. They had found help in taking T3-only but first they had to clear the T4 out of the thyroid cell receptors and that my friends is the bit of Hell I mentioned earlier.

It took me 9 months to finally feel normal again after starting T3. That was about 4 months of checking my temperature three times a day. 5 months of hand tremors. 6 months of horrible sleepless nights. All that but my heart was beating quite regularly at this point, not all the time but more and more it was not beating irregularly and no more coughing, none. Finally at 9 months came a realization that I had to dramatically decrease my T3 dosage. I couldn’t take the sleepless nights nor shaking hands. I gradually dropped my dose to 37.50 mcg at dose where I felt comfortable and my heart still beat normally.

At that point I felt good and decided I just couldn’t keep concentrating on the negative. I needed to be well. I quit taking my temperature three times a day and got on with my life. I knew 37.5 mcg wasn’t enough but it was okay for a while. About 7 months ago I increased gradually to 50 mcg and have been at that dose ever since.

At 50 mcg I had almost normal energy, my hair loss decreased, my sleep was reasonably good. I even slept on my left side at night (on your left side you can hear your heartbeat and when it is irregular that is disturbing). However, I knew I should wake up feeling more aware and sharp than I was. Even when I started my B12 shots, instead of feeling much better I felt only marginally better and, as time passed I felt even more lethargic than I had been feeling.

The good news

I think this makes a short blog a long one and I am sorry for the verbosity but we now move onward. This week I finally took a basal temperature and when it read 97.3 I knew it was time to increase my T3 and I felt certain my body could handle an increase. On Tuesday I added 6.25 mcg to my 11 a.m. dose. The first day I felt no change whatsoever. The second day I could tell my pulse was slightly higher and my sleep was better.

So far things are working rather well. My temperatures were up on the second day but now four days later they are down again.  My blood pressure is closer to normal (109/70). My pulse is normal (70). I don’t feel so muzzy headed when I get up in the morning. With my temperatures hovering around 98 during the day I know I am not done. I need more T3 and will aim for 75 mcg as that is the level that most people need to feel really good but if at anytime the tremors return or I feel hyper the dose will change. That is the beauty of T3-only, you can lower it and see quick improvement.

Kris Insight

Here is why I think it is working this time. It is only a theory mind you but I think taking the B12 shots and increasing my cellular levels of B12 has contributed to allowing what T3 I take to actually get in to the cells. When the T3 is finally allowed in to the cells you go quite hypo (slight weight gain, sluggishness) because you are using it all and need more.

I also think my inadequate levels of selenium, zinc, CoQ10 and Inositol were possibly keeping my cells from clearing all the T4 out and/or allowing all the T3 in to the receptors. I am now taking therapeutic doses of all those nutrients to get my cellular levels up where they belong.

I could be wrong so don’t take me to task about my insight. I am not a doctor, I am a dental hygienist who has successfully treated her thyroid resistance with the help of the “village”. With that said, if you are still having troubles with getting your T3-only treatment to work for you (or any thyroid treatment for that matter) may I make a suggestion? Get a Spectracell Nutrient test. It is clear to me that we really must test everything we can at the cellular level not just a normal blood test.

If you want more information on the trials and tribulations of going it alone just go here. I have pages and pages of experience you can read through. Obviously I am still learning and I need to keep an open mind and an informed one but for today increasing a minute amount has made a difference and I feel good.

Santé,

Kris

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13 responses to this post.

  1. Almost forgot — I WAS on 50 mcg of T3, until I read this: http://thyroidbook.com/blog/eating-gluten-increases-need-for-thyroid-hormones/ — I tested my thyroid antibodies – both were SKY high, so I stopped eating gluten, and began supplementing selenium using brazil nuts. Within 2 days, I had heart palpitations, and had to decrease my T3, hence my 37.5 mcg dose. !!!

    Reply

    • Whoops! I didn’t see this comment. I am primarily gluten free myself and I do feel better. I am actually low carb as the GF grains were really bothering my digestive system and I think I pinpointed sorghum as an actual sensitivity or allergen as it always increases my heart rate.
      I was low in selenium on my Spectracell blood test (you can put that in the search box and see the information) as well as CoQ10, B12, inositol and zinc. Several of those affect one’s thyroid, so I was supplementing all of them and taking B12 shots. I quit supplementing them as much when I found out that at least two of them will lower cortisol (zinc, inositol) along with melatonin and progesterone.
      I have gone low carb because my glucose was running a bit high even my fasting glucose. Do you check your fasting glucose? It is pretty fascinating to see what various foods do to your glucose levels. For example I just did a test before I checked my email. I took my reading before having tea with whole milk it was 101, which is higher than I would like after a big breakfast of coconut flour pancakes. 15 minutes after tea with milk I checked again and my glucose was 127! Obviously, whole milk causes a rise in my glucose levels. This afternoon I am having the same thing with full fatted cream and will see what that does to my glucose. If one eats foods that cause a spike in glucose all day long it will also have an effect on your thyroid, so I need to figure out what works and what doesn’t. Sorry I missed this comment before

      Reply

  2. Great blog! Another wonderful source of thyroid information is stopthethyroidmadness.com, which also has a yahoo group and a facebook group (http://www.facebook.com/groups/stopthethyroidmadness/). I am impressed that Zenthyroid’s doctor would suggest T3. I would urge him/her to test for Reverse T3 syndrome (measure T3 and RT3, and look at the ratio – stopthethyroidmadness.com has ratio calculator); I have yet to meet a doctor who has even heard of RT3 syndrome. I hit “bottom” last summer, discovered high RT3, high cortisol, and low iron; went from Armour to T3 only (which has NO animal products btw), and within 6 weeks had cleared, but didn’t realize I had cleared, so I, too, had a roller coaster experience for awhile (increase/decrease/increase/decrease). My maintenance dose of T3 only is 37.5 mcg, so it is interesting that you say that is not enough for you. Thanks for the blog!

    Reply

    • Thanks for the comment Marsha. The Facebook groups are wonderful and I recently discovered one for those of us who only take T3 thanks to the good folks on the STTM page. I am really interested in T3CM and they discuss the “how-tos” on that page as well as the complexities of taking T3 only:
      https://www.facebook.com/groups/T3onlySTTMdiscussion/406973946033045/?comment_id=407918732605233&notif_t=group_comment_reply
      Since this blog entry I have managed to get my dose up to 50 mcg but any higher and I have big issues of intolerance. The reason I keep trying to get closer to 75 mcg is the moderators of the Yahoo RT3 group suggests that 75 mcg is the optimum dose with FT3 over range but I find I am most comfortable when my FT3 isn’t quite that high. Sometimes you also have to feel comfortable in your own skin.
      I will say that my Yahoo discussion group was recently helping me through another roller coaster ride (I went quite hyper at 62.5 mcg and now have reduced to 50 mcg) and suggested SR Potassium. I ordered it and with some trepidation started taking it. It may have been the correct thing to do as things have normalized at 50 mcg. I would never have believed that normalizing sodium/potassium would make such a difference. I am going to test my electrolytes tomorrow and I will see if my levels are better but I am guessing the balance has improved.
      As for Zenthyroid, if she has read most of my thyroid articles she will know about RT3 ratio as I have talked about it several times. If she checks this entry sometime maybe she will let us know if she did test her RT3 and get a ratio. I know she has been looking for a new doctor and had an appointment a few weeks ago. I haven’t heard from her since.
      One more thing, I have a Facebook group called Krisinsight where we share all kinds of health information not just thyroid. Let me know if you are interested in participating on that page. I think I have enabled people to join without being my “friend” but sometimes that isn’t possible. If not, I can “friend” you and you will then have access to Krisinsight and my private page can be hidden.

      Reply

      • Hi Kris! Good to be on your site…I have be somewhat offline for awhile now. Luckily I got an email notification about the conversation continuing in the comments of your post so I am hopping back in. I had the appointment with my new doc who is great (Alan Christianson, Scottsdale). I started on dessicated thyroid meds and have decreased dosage after my TSH was frightenly low. I also did check my RT3 and my ratio is improving after 8 months of treatment so was happy to see that. I have also discovered a heavy metal toxicity so am dealing with that, as well as numerous mineral deficiencies. I think you did Spectracell testing but will have to go back and reread your posts about your balancing process.

        Anyway, hope you are feeling well. I love all the info in the Krisinsight group. Thanks again for incluing me 🙂 Are the leaves changing color yet in your cooler neck of the woods?

      • I have been gone and just now saw your comment “ZT” and now can’t seem to get it approved nor find it at all on my blog dashboard. Urgh! Anyway interesting that they have discovered heavy metals issues. I suspect I have some after working in dentistry for years and really need to look in to it this year. I am so happy for you that you have found a knowledgeable doctor as it will make all the difference in the world. I have been so happy with T3 that I hesitate to go back to NDT but I am seriously considering it as I think T3 only is raising my SHBG, Glucose and it is hard on my adrenal health. I do like it because when you show intolerance you can easily make a change and within 24 hours you feel better but I can’t figure out why I need to change all the time. What to do, remains the big question for me and it seems like I should have found my balance by now. Which NDT is your doctor prescribing? Do you know anything about people who are hyper and hypo? I think I may fall in to that category as every autumn I go hyper, or at least suffer intolerance issues and have to drop to 37.5 mcg of T3 to feel better. I once again find myself at that dose. See you on Facebook when you get back online, in the meantime take care and let me know when you can how things are going.

        Kris

      • Hi lovely lady~ Hope autumn has you feeling well and not hyper (or hypo!!!) at all. I am currently taking NatureThroid which has been wonderful so far. I am feeling much more balanced and even. I have less general energy than when I was overdosing on Synthroid and Cytomel but I am feeling better in the balance. Not the big waves up and down like before. My TSH was just retested to determine if my new meds are getting it back up where it should be and while I am still low, I am no longer super scary low and it is moving up in a good timeframe. So all is well. My heavy metal detox is going much smoother than I had expected, considering the high levels I had. How are you feeling? Are you still T3 only? BTW, thanks for the great tip I think you posted on FB about 5-HTP and adrenal health. I had beent taking HTP for years to manage my migraines and was kind of afraid to stop. Once I read your comment that it is not good for the adrenals, I stopped taking it with no issues. Gotta give my adrenals all the love I can – those poor little glands have been through way too much! Sending you wishes for great health and a very happy autumn 🙂

      • Hi Mikelle, Your news is such a day brightener and I hope all the thyroid folks will get a chance to see it. It makes me want to go back to NDT but alas for now I am staying put with T3 (currently on 37.5 mcg again and feeling good). My recent overseas holiday had its usual effect and I am posting a blog about it the first Monday in November. I really don’t understand how a vacation can mess with one’s thyroid so much but I was told long ago that time zone change has such a profound effect that you shouldn’t test thyroid for 6 weeks as it will change in that time. Will you tell me once again how you tested for heavy metal toxicity? I know it is next on my list but I am really happy to hear that the process hasn’t been too bad. I haven’t taken any 5HTP since I shared that little tidbit and I feel just fine (but I was taking it for a little bit of sadness that seemed to creep in to my otherwise happy days). Migraines are often associated with low thyroid function, so maybe getting that right has made a huge difference for you and the need for 5HTP has gone away. I was finding that taking Estradiol was causing migraines and have stopped all bio-identical hormones at least until I have my SHBG under control. I think it was binding all estrogens and no matter the amount I took it wasn’t enough, so enough is enough I don’t want anymore migraines. I am done with everything but Progesterone for now. Let us know how things go and if you write about your journey on your blog: http://www.zenthyroid.com/2012/08/01/thyroidchange/

        Kris

      • Kris – I also discovered recently that my electrolytes were off; not by testing, but by symptoms. I was fatigued, nauseous, dizzy, and trembling (I had been exercising more). I drank coconut water (loaded with potassium and some magnesium), felt better immediately, and continued this for several days. I now occasionally drink coconut water, and sometimes also water with sea salt to stay balanced.

  3. Hi Kris~ Many thanks for sharing your medication adventures. So happy that the T3 has been working for you. Heart palps = no fun. I am on Synthroid and Cytomel now and my doctor has suggested that I might want to try a T3 only protocol. I have been researching the web to get as much info as possible before making that decision. It is so good to read your personal account of your experience so far – very helpful. Please keep us posted on the journey to 75mcg.

    Reply

    • Posted by Kris on 8:39 at Sunday, May 20, 2012

      T3-only was a real roller coaster ride for me but worth it in the end (mostly because I had to do it on my own and still do). You didn’t ask but I will tell you anyway:-) I would recommend joining a group discussing RT3 because people with a RT3 problem need T3 only. Doctors often want to put you on a large dose of T3 right away and that backfires because first you need to clear the T4 by starting with a low dose of T3 until you can tolerate the dose you will need. This is the group who guided me through the process: http://health.groups.yahoo.com/group/RT3_T3/?yguid=354782489 They are very knowledgeable people who were seriously undertreated by their endos or general practitioners. Val is the group leader (or was) and she is a font of knowledge gleaned by experience. If you do nothing else, join the group and read her story in the “files” it is amazing. You can just lurk and learn a plethora of information. I am curious, who and where is your doctor? Most docs are uninformed when it comes to T3-only and refuse to try it. I would love for anyone reading my blog to know about your doctor should they be in your area and looking for a good doctor. My functional medicine doc knew enough to treat with levothyroxine and T3 but he still doesn’t understand how T3-only works (for instance you should have a suppressed TSH and you will have no FT4 and should have a very high FT3). Have a good week.

      Reply

      • Hi Kris~ Thanks for the info about the group. I have joined and done a bit of lurking. I am concerned a this point if my adrenals are ready for this so I am proceeding slowly and will retest them soon. I am also now on a dose of T4/T3 where I am feeling more stable (for now) and am just not ready to try something new. For the next couple months, I think I would rather feel OK and stable than rock the boat again when I finally got the boat a bit steady 🙂

        So yes, I may be the only person in thyroid land who is hesitant about the T3 only protocol despite the recommendation by the doctor. My doctor is Sharzhad Orona in Tempe, AZ. I should also mention that I have not tried dessicated thyroid becuase I am a vegan. I think Dr. Orona took this into consideration when making her recommendation.

        On another note, I wanted to share something with you about one of my favorite topics….kombucha! As I believe I told you previously, I have a 2.5 gallon continuous brewer. My SCOBY grew so nicely in there with the help of the warm Arizona temperature that it only takes 2 days between adding the sweet tea and pouring kombucha! However, my SCOBY has grown so much that it has overtaken the brewer so today I start again with making my new babies. I love it!

      • Posted by Kris on 16:25 at Sunday, May 20, 2012

        The Yahoo group will help you a lot as they know all the pitfalls and how to cope with them. Sometimes it is hard to trust their advice but by and large they know of what they speak with the possible exception of veganism (I suspect they would tell you to change your diet). Your kombucha is doing really well. How fun is that? My kombucha is doing well but I make a tiny amount in comparison to yours. I saw a large container at Costco yesterday that would allow for continuous brewing but I just don’t think I could drink that much. It takes an entire week to brew in my house but we either have windows open to let cool air in or windows shut to have air conditioning on, so nothing like AZ heat. Have you flavored it yet? I have tried ginger but I would love to add fruit juices I just never have it on hand. Today I had a bit of sweetened tea left over, so I added it to the bottle of “booch” to see if it makes it more carbonated in the next week. Take care and let me know if you decide to T3 it or not. You are so right though don’t do it unless everything is A-OK and ready to go.

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