What to do, What to do.... Cytomel is not my friend (today)

[DebE13]

The ups and downs of trying to figure out what will make me like living in my body again..... I started out with a rather soured attitude about "Happy" New Year thinking that this is just another stinking year of struggles but quickly realized that attitude has no place in a plan for wellness. So I allowed myself a little time of feeling resentful of all the happy people on tv celebrating the new year while I stayed at home because I am too tired..... I can't eat anything so it isn't fun to go out..... I can't tolerate the noise and smells..... my heart is pounding and it's very uncomfortable living within my own body....... and so on.

The better me gave a sharp reminder that I have seen some improvements too. They may be a wash since I've seen quite a few set backs too but I am continuing to take steps forward and that's what counts. My MC is still active and my goal is to get other issues in line in hopes that they are the final pieces to my long and drawn out MC puzzle. My GI followed up with me and gave me the weary "OK" when I told them I did not want a follow up visit at this time for the D since I would like to see if improving thyroid and ferritin issues will have any impact on the 4-6 trips to the bathroom each day. They didn't sound thrilled that I dropped down from 9 to 3 mg of entocort since taking one pill a day does the same as taking three and by doing the same, I mean it doesn't do much. I'm just working my way down to discontinuing them (again). I made it clear I would not be willing to take prednisone or any bioloigics at this time. They said they'd follow up in a few months.

So on December 13th I found a new internal medicine doc that I loved. He agreed my FT3 levels were low and obliged my request to increase my cytomel (actually a generic liothyronine that is Deb friendly, as far as I can tell) to 15 mcg/day. A bump up of one more pill each day in hopes to raise my FT3 levels into the upper end of their normal range. It is currently right at the point of falling out of the normal range by being too low. My 100 mcg dose of Tirosint was not adjusted and I am wondering if that should be the next step. Since it's been a relatively short period of time taking the additional dose I'm not sure if I just need to tough it out and let my body adjust or if I should be contacting my doctor again instead of waiting for the February appointment.

I know it takes 6-8 weeks to see how things are going but so far, I can't say I feel any better and given the increased heart rate and other hyper symptoms I'd have to say I actually feel worse. At the time I was wondering if it was holiday stress since I am not a big fan of Christmas and the holidays but now that has all come and gone, I'm not feeling any different.

My doc suggested to add the extra dose in the morning but considering I crash in the afternoon I didn't think that would be the best route (10 mcg at 7am and 5 mcg at 1pm). I've been taking it at 7am, 11 am, and 3 pm. It seems to fit between eating/break times and my other meds. Is this an odd pattern?

Now here is where it gets complicated.... I have been taking the Tirosint at 9 pm when I go to bed. I was hoping that it would improve absorption and it seemed convenient because I didn't have to think about the timing of eating and taking meds in the morning. I have to be at work at 5:45 am so I eat a very light breakfast around 5 am and then another light snack at 9 am break. I am also working on my low ferritin levels, for almost two years now. It has been slowly rising.... 13 to 25 to 28 (forgot the unit of measurement). Considering my continued WD and fatigue I wonder how much these low numbers are factoring into my whole wellness picture. I found a thyroid article stating many women don't notice an improvement in the symptoms until they reach 90. That was another issue I brought up to my new doctor and he agreed. My previous PCP was very sympathetic but just shrugged her shoulders as what to do. In a year and a half of taking 324 mg of ferrous gluconate my numbers are rising at snails pace. I was given a script to take the iron pills three times a day yet due to my thyroid meds, I could only fit in one pill per day. My new doc and I agreed that I would go back to taking the Tirosint upon waking and then I could take an additional iron pill at night before bed. As far as I could find, iron does not have any interactions with LDN which I also take at 9 PM for pain management (works wonders).

Things were going well until Christmas Eve. I started getting the same symptoms of taking too much thyroid medication that I did last year at this time when I first started the LDN at too high of a dose. My head felt like it was in a bubble, headache, pounding chest, chest feeling itchy from the inside-out. It put a damper on the holidays and since the doctor offices were closed I went back to taking the 10 mcg of cytomel and switched back to taking the Tirosint at night. I figured going back to what caused no issues previously was the way to go until I could call my doctor. Well, things balanced out but my iron pill started causing me grief.

Each evening I would experience bloating, bad gas, and D shortly after taking my iron pill. My MC is very typical in that it is active in the morning and I am pretty much set then for the day. Now I was starting to have D issues later into the evening and waking me up at night. I didn't want to go back to 9 mg of entocort in hopes that it may work (I know it doesn't) so I started skipping my iron pill for a few days and those nasty little issues resolved. So now what? My ferritin is still at a pathetically low rate and I don't take anything. My doctor added the ferritin test along with my thyroid labs for my visit in February and said we could look at iron infusions if we can't get my ferritin levels higher. So I decided to just wait on that one and leave the iron pills out of my daily pill cocktail.

So everything was getting back to being ok- 100 mcg Tirosint at 9 pm and 5mcg cytomel at 7 am, 11 am, and 3 pm. Friday evening I started experiencing a rapid heartbeat again. It continued all day Saturday around 93 beats/min, dropped into the 80's but made me uncomfortable. My norm is 70 beats/min. I skipped my 3 pm dose of cytomel and was hoping it might help. I don't like the idea at all of skipping here and there because it will do me no favors in trying to find out what is the best dose. Again, it's the holiday and the doctor's office is closed.

I am lucky to have found a doctor who is willing to give this a try even though my numbers are already "excellent." He agrees that symptoms are important too and not just numbers. The next lowest dose of Tirosint is 88 mcg. Would it be best to ask for a month's supply of a lower T4 dose? The bad thing about that is I just filled a 3 month supply of the 100 mcg Tirosint from my old endo so a new doctor writing a new script for another dose may throw up red flags with my insurance company.

My alarm just went off for my 7am pill.... to skip or not to skip. Good grief.

[tex]

Hi Deb,

While it may take 6–8 weeks to reach true homeostasis with a thyroid treatment change, it only takes about 2 weeks to get about 80–90 % of the way there. The tachacardia isn't likely to get any better with time. Trying to force your body to live with too much T3 is the equivalent of trying to live with hyperthyroidism. I agree — the extra T3 is not your friend.

And remember that hyperthyroidism is associated with diarrhea, while hypothyroidism is associated with constipation.

I'm certainly no endocrinologist, but I'm wondering if you might need calcitonin. One of the big differences between synthetic thyroid hormones and natural thyroid hormones is calcitonin. The synthetics don't contain it. Calcitonin is produced by C cells (parafollicular cells) located in the thyroid, so presumably they were removed when your thyroidectomy was performed.

Calcitonin is usually considered to have little effect, and most endos probably aren't concerned about it, but it is involved with the metabolism of calcium and phosphorus (both important electrolytes). It also tends to sort of counterbalance parathyroid hormone in the regulation of calcium. There is also research evidence (on rats) that calcitonin acts on the CNS to suppress appetite/food intake. However, there is also research evidence that too much calcitonin in circulation can cause D.

As I said, I'm no endo, but based on the function of calcitonin, it seems apparent that a deficiency could provoke cardiac issues such as you describe, because calcium regulation and cardiac function are very closely associated. And just because calcitonin deficiency may not be a problem for most TT patients does not mean that it cannot cause problems in your case.

If I were in your situation, just to be on the safe side, I believe I would try to consult with my endo's office ASAP rather than to wait until the scheduled appointment. The point is, if you're not going to want to live with those symptoms over the long term, then there's little point in running the clock out on the trial. I would ask if he thought that calcitonin supplementation might make any difference.

Incidentally, when I read this sentence:

I found a thyroid article stating many women don't notice an improvement in the symptoms until they reach 90.

I thought — "Wow! Those women are a lot more patient than I could ever be. By the time they reach that age they've probably forgotten what the treatment was supposed to accomplish anyway." And then it dawned on me that you were probably referring to an iron test level.

Tex

[DebE13]

Thanks Tex, I always wondered how synthetics are considered better by the medical community (insert eye roll) when NDT contains all of the thyroid hormones. Why would the body produce it if it wasn't needed?


I was reading on the ThyCa website this morning and got my feathers ruffled that this is on their site:

http://www.thyca.org/pap-fol/more/hormones/

"Background on Thyroid Hormones: T0, T1, T2, T3, T4

T0, T1 and T2 are hormone precursors and byproducts of thyroid hormone synthesis. They do not act on the thyroid hormone receptor and appear to be totally inert.

T4 is inert too, but conversion to T3 (in the liver, kidneys, brain, and other organs) activates it, in a highly regulated way.

Taking T3 (or using Armour thyroid) bypasses that natural regulation, which is generally an unhelpful thing to do.

Consequently, pure T4 is normally the best, most stable, and most reliable form of thyroid hormone replacement.

Although pure T3 is available as a pill or tablet, it is rarely used to treat hypothyroidism since the physiologic needs of the body are better served by the normal or gradual generation of T3 from T4. There are circumstances, however, when your endocrinologist may prescribe a T3 medication for brief periods of time; for example when preparing for radioactive iodine therapy, says the reference bookThyroid Cancer: A Guide for Patients."



My whole point of this was to feel better I've found it beneficial so far to come into the doctor's office with my own plan instead of seeing where they want to go with treatment although it's been quite often like banging my head against the wall, haha. Do you think it would be better to decrease the Tirosint and continue with the higher dose of cytomel or ask to try some form of NDT? Part of me wants to agree with their way of thinking that my numbers are good so why mess with a good thing but I know I could feel better.

Normally I would consider my porcelain white complexion a pretty thing but I tend to startle myself at how much I still look like the walking dead. I looked for the zombie emoticon but didn't find one. I know that part isn't related to my thyroid but I'm trying to keep a sense of humor. I will go with anything worthwhile requires effort.

I am just a tad apprehensive because I don't want to be a pain to my new doctor but I'm sure I'm being too paranoid since if he already has an open mind about thyroid treatment he knows that finding the right balance is trial and error. My son is getting married this coming July and I am determined to be a ball of energy and excitedly pronounce that my MC has improved because of correcting my other health issues.

[tex]

T0, T1 and T2 are hormone precursors and byproducts of thyroid hormone synthesis. They do not act on the thyroid hormone receptor and appear to be totally inert.

I agree with you. So often medical researchers are unable to discover the actual reason for the existence of a hormone, or an enzyme, or whatever, so in a fit of stupidity they assume that it has no purpose. How dumb can they be. Why would the body go to the trouble (and energy expense) of producing it if it has no purpose? Everything has a purpose and a reason for existence, whether we are capable of understanding it or not. And of course those 3 prohormones are another reason why natural thyroid is better than synthetics. Did you ever read any of the stuff on this site?

http://jeffreydachmd.com/why-natural-th ... synthetic/

Such as:

“Natural Thyroid is Not an Ideal Solution” ? !!!!

This nonsense really makes my blood boil and my eyes pop out of head.

Let’s start by doing a little research. If the above statement is true, we should expect to find that the FDA HAS NEVER recalled Synthroid because of problems with stability or potency, and we would expect that the FDA HAS recalled natural thyroid pills because they are unstable, and vary in potency. So let’s ask the FDA about this. What do we find? In reality, the FDA says Synthroid is unstable and varies in potency, while natural thyroid from RLC labs HAS NEVER been recalled for instability or variation in potency.

Is Synthroid a Reliable and Stable Drug?

No, Says the FDA.

Synthroid was marketed in 1955, but not FDA approved until July 24. 2002 because of a “history of potency failures…indicates that Synthroid has not been reliably potent and stable.”– United States Food and Drug Administration Letter to Synthroid Manufacturer, Knoll Pharmaceuticals, April 26, 2001 (link )

Unstable, not of Consistent Potency from Lot to lot

Here is an FDA document August 14, 1997, Docket No. 97N-0314, which says:

“The drug substance levothyroxine sodium (also called Synthroid) is unstable in the presence of light, temperature, air, and humidity. Unless the manufacturing process can be carefully and consistently controlled, orally administered levothyroxine sodium products may not be fully potent through the labeled expiration date, or be of consistent potency from lot to lot.

There is evidence from recalls, adverse drug experience reports, and inspection reports that even when a physician consistently prescribes the same brand of orally administered levothyroxine sodium, patients may receive products of variable potency at a given dose. Such variations in product potency present actual safety and effectiveness concerns.

However, no currently marketed orally administered levothyroxine sodium product has been shown to demonstrate consistent potency and stability and, thus, no currently marketed orally administered levothyroxine sodium product is generally recognized as safe and effective. ” end quote source: http://www.gpo.gov/fdsys/pkg/FR-1997-08 ... -21575.htm
FDA Document [Federal Register: August 14, 1997 (Volume 62, Number 157)][Notices][Page 43535-43538]

Do you think it would be better to decrease the Tirosint and continue with the higher dose of cytomel or ask to try some form of NDT? Part of me wants to agree with their way of thinking that my numbers are good so why mess with a good thing but I know I could feel better.

I'm a fan of NDT, so I'm prejudiced (I use Armour), and so I'm probably not the one to ask. If I were a physician in charge of your treatment, I would probably start with an NDT and then supplement it with one or more synthetics if needed, rather than the other way around.

But to answer your question, you appear to be getting too much T3, so I would look at reducing cytomel. NDTs contain only a relatively small amount of T3 (compared with T4).

Tex

[brandy]

Hi Deb,

I can't comment on the thyroid discussion but I felt "normal" when my ferritin got into the high 40's, i.e. 47 or 49. After feeling like death for what seemed like forever when I started feeling "normal" and had a test it tested at something like 47 or 49. I'm not sure what my score is running now. I just flipped through my medical folder and it looks like my last ferritin test was January 2014 and the score was 51.

Perhaps for me the feeling is relative, i.e. at score of 51 I felt dramatically better than score of 12 if that makes sense.

Best wishes going forward.

Brandy

[DebE13]

Thanks again, Tex! No I haven't seen that link before. It is full of very useful information. THANK YOU!! I will see if my doctor is receptive to dropping both the Tirosint and Cytomel and giving a NDT a try. I particularly liked this comment:

http://jeffreydachmd.com/why-natural-th ... synthetic/

"Natural Thyroid is still the preferred choice. Among other missing ingredients, the Synthroid and Cytomel lacks Calcitonin which is present in natural thyroid. Calcitonin production may be deficient or absent in patients after total thyroidectomy which may remove the C cells (parafollicular cells) responsible for Calcitonin. Giving back the missing calcitonin makes sense, and patients usually feel better."

I want to jump up and down and yell "Me, me, me.... that's me!!" Well maybe. Maybe it is, maybe it isn't but it's worth a try. It's always been my pitch all along that I just want to try it. We know what works for my endos- they like my numbers with 100 mcg levothyroxine of some sort and 10 mcg of liothyronine. I, on the otherhand, do not like that dose at all. So if we try something and I can say "I feel great!" (I'd settle for even a little bit less than great) and my numbers are ok, then let's try it because we can always go back to the other way. I'm the one that gets to ride the roller coaster and every doctor visit puts money in their pocket. I've had no luck with the past three so I will have my fingers crossed that maybe this time will be it.

Brandy, thanks for your comments. Even at 40-50 I still have a ways to go but hopefully will get there sooner than later. It's good to know that I could possibly feel positive changes at a lower number.

I seriously don't expect to feel my pre-2007 self ever again although I do have brief periods where I do have that energy and a day goes well and I feel almost like the old me. I cherish those days but then have anxieties over loosing that feeling and wanting to hang onto it. I am thankful that I know I can feel good but it's equally frustrating because it seems out of my control and slips through my fingers. That's where the one day at a time philosophy comes in. I do ok most the time but I still know my meds aren't quite right because anger issue creep in much too often. It seems odd because I know when it's happening and it's like I'm a bystander to my own emotions. I know I shouldn't let my anger flare as often as it does but it's there whether I want it or not. I'm pretty good at keeping it under wraps and not letting it explode on other people but just having the feelings there bothers me because it's not me at all. In all fairness to my professions I do need to say that my anger leaks out the most on my husband. I spend all day keeping everything in check to appear "just fine" and when I get home it just gets to be too much and it comes out. If that part makes sense. It's an awful feeling to have the worst parts of me unleash on the one I love the most.

That's just another motivator to keep trying.

[tex]

Deb,

I forgot to mention, have you seen this site? It supports what I said about everything having a purpose, regardless of whether or not researchers are able to figure out what it might be.

The conversion of T4 to T3 is accomplished through the action of two enzymes known as D1 and D2. When D1 and D2 activity is low, conversion of T4 to T3 is insufficient to meet the body’s needs and signs and symptoms of hypothyroidism appear. In recent years it has been discovered that D2 activity is enhanced by the presence of T2, a form of thyroid hormone that has traditionally been considered inactive and of no importance.

It has also been found that T2 plays a crucial role in energy production in the liver, heart, and skeletal muscles. T2 acts quickly and directly to increase the metabolic rate by facilitating oxygen use, while T3 acts more slowly and indirectly through the activation of various enzymes. While very little is known about T1 activity, it now appears likely that it too is an active hormone, and not simply a breakdown product of T4 and T3.

Where Has all the Thyroid Gone? Part 2

And here are more research references on T2 than you can shake a stick at.

T2 Some Information

Tex

[DebE13]

Wow..... what a wealth of information. Some went over my head but I understand the jist of it. More to save in my ever growing thyroid reference file. Reading information like this excites me because it assures me that I'm not just a pain in the rear type patient but that there is something more out there that could help me get out of this rut I've been in for way too many years. It also infuriates me at the same time. I had flashbacks of numerous endo visits and dismissive comments that were made. I look at how much money has been wasted on the follow up visits that got me nowhere. The everyday life activities that I've missed out on since I am a prisoner of my own body. I really don't understand why a patient doesn't have the right to choose which type of medication they want. There are many out there that do the same thing (or not) so why not try? Actually, the links you provided show exactly why but it's hard to accept that some physicians refuse to take their heads out of outdated text books and look to what seems to be ample information for new understanding. It's certainly a disservice to the patient. The scariest part of it is that there are so many. Trying to find a doctor in this area that is up to date is extremely difficult. Hopefully, my search will be over and if it's not.... then the search will go on.

I am going to see if I can just make another office visit and talk about NDT. If he would agree, is it as simple as switching over just like that? The whole measurement of grains vs mcg is unfamiliar to me. How do they determine a dosage- look in the little book and do a converstion? If the TSH is supposed to be suppressed (mine in the past year has been 0.56, 0.67, 0.36 and even 1.78 uIU/mL and they are satisfied with that) how does that effect the dosing?

[tex]

As long as all the endocrinologists stick together and follow the same treatment methods, their risk of being sued for malpractice is minimal.

1 grain (60 mg) of Armour thyroid contains 9 mcg of T3 and 38 mcg of T4. You probably remember that T3 is approximately 4 times as potent as T4. So if we multiply 4 times the 9 mcg of T3 we get 36 mcg (equivalent T4). Adding the 36 mcg (T4 equivalent) to the 38 mcg of T4 in Armour gives 74 mcg.

So 1 grain (60 mg) of Armour is equal to approximaely 74 mcg of T4 (synthroid)

If you're taking 100 mcg of T4 and 15 mcg of T3, that's 100+15X4=160 mcg of T4 equivalent. That would be equal to 160/74=2.16 grains of Armour (if my math is correct).

But because switching to NDT (or vice versa) doesn't always work as expected, your doctor may want to start with a lower dose and work up, especially since the symptoms you are having suggest that your current dose might be too high.

If 10 mcg of cytomel and 100 mcg of tyrosint worked without causing overdose symptoms, I'm guessing that 2 grains (120 mg) of Armour will probably end up being your optimum dose, but again, your doctor may want to start at a lower dose and work up (since hypothyroidism is less risky than hyperthyroidism).

2 grains (120 mg) of Armour will provide 76 mcg of T4 and 18 mcg of T3. If you work up to that dose and you're still having hypothyroid symptoms, then you can probably bump it up a quarter grain (15 mg). If that still leaves you with hypothyroid symptoms, it's available in strengths all the way up to 5 grains (300 mg).

FWIW, I have tried 2 grains of NDT for several months (I had been taking 1 grain). I had no hyperthyroid symptoms, and I promptly lost 10-12 pounds. When I dropped back down to 1 grain, I soon regained the weight. But my point here is that my thyroid is still intact and functional. After correcting my chronic magnesium deficiency, I do just fine with 1/2 grain of Armour. So without a thyroid gland, I suspect that your optimal dose might be significantly higher than 2 grains. That will have to be determined by trial and error. IMO, an NDT is much more forgiving than the synthetic substitutes, so there's probably more flexibility in the dosage without wreaking havoc on symptoms.

Tex

[DebE13]

So far 2017 isn't off to a great start. Tried contacting my doc all day yesterday and the computers were down and I couldn't make an appointment. Called today and they wouldn't let me make an appointment but I had to talk to the nurse. I've not had much luck in having a third party relay information for me to the doctor. I gave her the whole story which is quite confusing since it involves a handful of medications , changing does and times, and other little details I'm sure we're skipped over. She was unable to pronounce several of the meds I'm taking which doesn't leave me feeling very confident but at least she was friendly. I told her immediately I switched back to my previous dose and would prefer to make an office visit since I'd like to request NDT. I mentioned my thyroidectomy, calcitonin, and the information from the link Tex provided. She called back and said my labs need to be done and we'll go from there. I know that is to be expected yet I heard " nope, you're #%*$&? once again."

I know I'm overreacting but I'm bummed. I am not ready to be told no again. I suppose we could try dropping the dose of tirosint but I'm not sure if that's the next logical step either. Big Sigh.

[tex]

Hi Deb,

Please don't write it off yet as another wild goose chase. It's always easier to win when you maintain an attitude of optimism. They might surprise you. For one thing, if changing meds is a possibility, then the doc will need to know exactly where your lab results stand initially, so that he can formulate any changes correctly (based on the most current information.

Best of luck to you at your appointment.

Tex

[DebE13]

Thanks for the attitude adjustment. :)

In my head I know it's the next step but the contant struggle makes me want to flop down on the ground and pitch a fit. I suppose if I was two years old it may be understandable but you're right that a negative attitude never helps. I have a very pleasant demeanor when with the nurse and doctor because I agree with the catching more flies with honey than vinegar adage. That doesn't stop the profanity and sarcasm from running through my head in the background (also not healthy to hang onto). The helplessness of knowing there are alternatives that work and not having access to them is very disconcerting. I am putting the horse before the cart and driving myself nuts.

To add insult to injury I went to the desk to register as a walk in to have my labs drawn and was told someone else is using my social security number in their system. This was the facility I left in 2012/13 when no one took my plea to look into my undx thyroid issues. Now I am back and get to follow up on that one. I cannot register for my online account to check my lab results until this is sorted out.

Apparently this is another lesson in patience. I'm glad to have a place to vent. :)

[DebE13]

Whoohoo me!!!!

I've wanted to try Armour since 2013 and today my 4th doctor agreed to give it a try. I'm a bit nervous that it won't agree with me and I've finally just recovered to my normal tired self after three weeks of a bumpy ride. No more palpitations and being winded by walking up the stairs. Hopefully this transition will be smoother. We had a good conversation and he really isn't thrilled to change my meds since all my labs are in their great ranges but is willing to see what happens. My absolute favorite comment of our whole conversation was that he does not favor one medication over the other and that while Synthroid works for many there are those left that need something else. He isn't convinced that my fatigue is due to my thyroid and not the fibromyalgia and I can't disagree with him. Add the MC and fatigue is inevitable. Although, with my FT3 labs being at the very end of the low range, I am driven to at least try. We agreed we know what works (tirosint/liothyronine) to get good lab results so if I have issues I can go back to that.

I haven't heard from the pharmacy yet so I'm feeling a bit impatient.

[tex]

Well whatta ya know? Success at last.

Congratulations! Your hard work and persistence have finally paid off.



I hope it works, and the transition goes smoothly. But even if it doesn't help, you definitely have an ace in the hole with your current treatment to fall back on if necessary.

Best of luck to you with the treatment change.

Tex

[DebE13]

Thanks Tex!! I am very excited and nervous at the same time. He told me that he was going to confer with the pharmacist for dosing since he doesn't do the conversions that often. That made me cringe a bit but I can't be upset with him because I've been searching since 2013 for a doctor who would even allow it. I picked up the 30 day script and it's for 1 grain (60mg) per day. It seems to be a low dose and I'm not sure if I should be concerned. I dusted off my copy of "Stop the Thyroid Madness" and was reading the chapter on how to successfully transition. I debating on how long to wait before messaging him.

Did you start low when you started Armour? I seem to be overly sensitive to anything and everything so maybe the 1-2 week one grain dose should be upped sooner than later? or contact him early so I have it on hand and see how I feel? I have no idea what to expect. It is just one pill so I won't be doing any split dosing either (yet).