A Thyroid Mess: I have posted on here recently... - Thyroid UK

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A Thyroid Mess

GKeith profile image
7 Replies

I have posted on here recently concerning my erratic behavior, con-cerning my dosing and (re)dosing the same doses of thyroid medications over the past year or so. I was so mixed up and stymied over my thyroid situation that I just sensed a crisis of unknown proportions that I would never figure out as I have been going in circles for the last six months---like a dog chasing his tail--- I had started, by my endo, on T3, along with a low dose of T4, in October of 2019 and I was doing very well and had progressed from 50 mcg’s of T4 & 30 mcg’s of T3, to 75 mcg’s of T4 to 75 of T3, to 100 mcg’s of T4 with the same 20 mcg’s of T3, because I felt better on it, even though something went wrong halfway through the prescription when I was totally crashed and became (physically) sick and (mentally) worn out and without a clue as to what happened to me. As I just mentioned. my endo had started me on 50 mcg’s of T4 and 30 mcg’s of T3 in October of last year, 2019. So, here’s my sad, but true, woe is me, story:

I had been diagnosed with Hypothyroidism in 1990, in Atlanta, Georgia and the doctor was a gastro-enterologist who had an office just a few miles away from where we were living, in Rex, a small suburb of Atlanta. He told me the usual: I would have to take a pill for the rest of my life and, then, wrote me out a prescription for .88mcg’s of T4, which I took it in the form of a brand name Levothroid and for the next 28 years, it and the size, of the dose, 88 mcg’s, was never changed, or even discussed by any of the 4 or 5 doctors I have seen since then.

So, to continue the saga: In 2003, I moved my family back down to Florida, to Spring Hill, a suburb of Tampa, where I saw a doctor who was a G.P,, a D.O. and who leaned towards natural healing. After seeing her for several weeks she announced to me that in my “very healthy state,” I could stop taking the levothroid, which was very confusing to me, even as I stopped taking it, for a week. I was having a co-lonoscopy about a week later and talked it over with my gastroenterologist, who totally disagreed with her, saying that would be “very dangerous.” I decided he was right when I realized she, apparently, had no ulterior plan and so I took the T4 again.

In 2018 I travelled to Europe and had a bad experience with my thyroid medication: it was delivering to me a series of the worst “migraine” headaches I had ever experienced, up until then. At first, I thought it was a “left-over” symptom of having spent 10 years as an amateur, then professional fighter, and 50 or so matches, along with hundreds of rounds of sparring in the gym and fighting on the streets.

But, somehow, I knew it was my thyroid and I became keen on trying. So here is what happened: The 50 T4 was fine, as was the 30 T3 and I felt good on it for six months, when my endo, moved me to 75 T4 & 20 T3, which, again, I spent about six months on, before moving to 100 T4 & stating I would take the 100 T4 if I could stay with 20 T3 instead of 10, which my endo allowed and then, 45 days later, just after having 4 teeth pulled, I “crashed,” and the migraines returned full force, which included dizziness & brain fog, along with some memory-loss. Then I really went “brainless” and for about the last 4 months have been trying any pill or combination of pills that would make me feel a little better. I stopped last night, when I found out the truth: The T4 was Synthroid, which I know because I took it, or Levothroid, another brand name, for the first probably 27 of the 28 years I took thyroid meds and only “crashed” in Europe, when I began getting the first “migraine” headaches. When I came back, after con-versing on this website & reading of the many T3 stories I became very keen on trying it, T3, which I did & I “liked” it, mostly because I was “sick” on the T4 only and, as I said above, I got an endo and got all the way to 100 mcg’s of T4 & 20 of T3 before I crashed. Then, as I have had 3 months of the headaches, I heard a not unusual complaint from a couple of patients about their intolerance of taking different “brands” of T3, something I thought I had no problems with but then looked at 6 plastic bottles of pills and checked them for the manufacturer’s name because I knew every manufacturer had a different pill to sell, even though most patients who take T4 & T3 rarely check them. I had 7 bottles of pills and was absolutely shocked into “reality” when I noticed that every single bottle but one, had a different manu-facturer.

The first pill bottle was dated 2/28/2019 and was described as Liothyronine 5 mcg TAB with, in small print you could barely notice much less read: “Sub for Cytomel 5 mcg tab (tablet).” The manufacturer had replaced the T3 original tablets that I had previously taken with a different pill, made by a different manufacturer, Paddock Labs, without ever telling me. The next pill bottle was labelled 50 mcg of T4 & had been filled on 10/12/2019. It, too, was a different manufacturer, Mylan Labs. The next pill bottle I had was filled on July 27, of this year, 2020 and was also filled by a different manufacturer, Alvogen, inc., and was a Levothyroxine 75 mcg tablet with the color listed as violet. This pill was written as a re-placement for the 100 mcg’s of Levothyroxine I had gotten sick on because of migraine headaches, said headaches continuing, making me absolutely befuddled as to what to do, NOW? So, I went back and forward on the same 100 mcg’s of Levothyroxine prescription that had been filled, 3 months previously, on 8/19/2020, then back on the above mentioned 75 mcg tabs but to no avail, the headaches continuing until I went back on 75 mcg’s written specifically to test if the Synthroid would get rid of the headaches because it was, I believed, the same as Levothroid that I had been taking for most of the 28 years on T4 only This prescription was again filled by a different manufacturer, Abbvie US, LLC, and was a pre-scription for 75 mcg’s of Synthroid, T4, and, again, was filled just 7 days ago, on 11/19/2020 & may have worked. I say “may have” because I am still taking it, with the T4, 20 mcg’s of T3, a large bottle of 540 pills which continue giving me “thyroid storm-like” headaches. I, again, think (with whatever parts of my brain are still functioning) that the T3 pills are either too weak or too strong but continue to be the pills that are giving, & prolonging the headaches. So, anyway. The Synthroid, I believe, was Levothroid not Synthroid, I now believe but, the Synthroid, although ‘stronger” (I could feel it) than the Levothrox-ine serum I’m now taking, is not strong enough to make much difference because it’s T4, an inactive hormone. The Cytomel, on the other hand, which I took one 5 mcg pill was way too strong for me and gave me a terrible headache. I paid $60 for a month’s supply and so, will now stop taking it. The T3, an active hormone, is much stronger than the T4 but I still don’t understand why it’s that “much” stronger. It’s half the size of liothyronine serum I’m taking.

BTW, I began taking 100 mg’s, 1 tablespoon of liquid chlorophyll a day, which is supposed to lead to a healthier metabolism along with a more balanced body chemistry just yesterday & I’m also trying to decide on a minimum amount of other vit’s to supplement what, I believe, every hypothyroid patient needs: like vit D, B, C, calcium, selenium, iron, ferritin & cortisol. Does anyone have any ideas of what a “minimum” of these supplements should be?

Well, that’s it, if you can cut through the brain fog and dizzy spells, to have any opinion, through per-sonal experience, I would be grateful to hear it, esp. if you can actually “explain” it better than I can.

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GKeith
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humanbean profile image
humanbean

A few things...

Although opinions vary, many patients find that T3 is about 3 or 4 times as potent as T4. Personally I think it is 3 times, but as I said, opinions vary.

So, 20mcg of T3 is roughly equivalent to 60mcg - 80mcg of Levo.

One of your problems is that the manufacturer of your thyroid pills (both T4 and T3) chops and changes all the time, and thyroid hormone pills aren't all the same. The active ingredients may be the same from one pill to another, but the ingredients the pill is actually made out of can change quite a lot.

The thing you need to do is to find a manufacturer whose T4 and T3 you can cope with without migraines or other symptoms and get your prescription written in such a way that the brand is stipulated and that the pharmacist you go to can dispense what you need.

It may take quite a lot of trial and error to find the best manufacturer for you. With some luck you might find out the ingredients you need to avoid and which you can cope with, and that might cut out some of the experimenting you have to do.

To find out the ingredients in different pills (only those prescribed in the USA), use this website :

dailymed.nlm.nih.gov/dailymed/

Info on the website :

About DailyMed

DailyMed provides trustworthy information about marketed drugs in the United States. DailyMed is the official provider of FDA label information (package inserts). This Web site provides a standard, comprehensive, up-to-date, look-up and download resource of medication content and labeling found in medication package inserts.

The National Library of Medicine (NLM) provides this as a public service and does not accept advertisements. The drug labeling information on this Web site is the most recent submitted to the Food and Drug Administration (FDA) and currently in use; it may include, for example, strengthened warnings undergoing FDA review or minor editorial changes. These labels have been reformatted to make them easier to read.

Although different people have different sensitivities, things to look out for that upset many people are :

Mannitol, lactose (in people who are lactose-intolerant), acacia. Artificial colours may also be a problem too.

Note that the Dailymed site gives info on drugs prescribed to animals as well as humans, so be careful that you are reading the appropriate entries for humans.

With the lack of consistency in both brand and dose of your thyroid hormones I'm afraid I wouldn't know where to start with suggesting what you dose. And the story is so complicated that you really need to write a timeline for yourself (spreadsheets are helpful). The timeline would need to give dates, doses of T4 and T3, brands of T4 and T3, and test results you get that tie in with the different doses and brands. It would also help if you looked up symptom lists and scored yourself on the symptoms you get so you can see when things are getting better or worse.

For a couple of symptom lists that you might find helpful :

1) thyroiduk.org/wp-content/up...

2) hypothyroidmom.com/300-hypo...

Good luck.

GKeith profile image
GKeith in reply to humanbean

Your information and just you're obvious work and time spent are priceless but it's also what I always pray for: that a human being shows up every now and then and speaks the words I need to hear the truth. May Peace be upon you, in these terriblely dangerous times.

humanbean profile image
humanbean in reply to GKeith

You're welcome. :)

helvella profile image
helvellaAdministratorThyroid UK in reply to humanbean

T4 and T3 Equivalence – Thinking about absorption

We see a lot of discussion about the equivalence of levothyroxine (T4) and liothyronine (T3). People suggest anything from 2:1 through 15:1.

T4 Absorption

Consider a common claim is that many people absorb 80% of the T4 they take. We might see this as fairly typical:

   T4 dose     125 micrograms

   Absorption    80 %

   Absorbed    100 micrograms

T3 Absorption

Similarly, a common claim is that many people absorb 95% of the T3 they take. We might we see this as fairly typical:

   T3 dose     50 micrograms

   Absorption    95 %

   Absorbed    48 micrograms

Pathways

Many texts suggest that T4 goes in three directions – some is converted to T3, some is converted to rT3, some is excreted. If we simply assumed that these portions were equal, we would see a T4:T3 ratio of 3.33:1.

   T4:T3 ratio 3.33

This is very unlikely to be exactly right.

Equivalence

In order to take the equivalent to 125 micrograms of T4 as T3, first note that we might only absorb 100 micrograms of T4. (The actual amount could be higher or lower – this is just a typical value suggested.) Then use the 3.33:1 ratio. That means we would need to absorb 33.33 micrograms of T3 to be equivalent to 100 micrograms of T4.

In order to absorb 33.33 micrograms, assuming an absorption of 95% of a dose of T3, that would need a tablet of just over 35 micrograms.

   Need to absorb  33.33 micrograms

   Absorption    95 %

   T3 dose     35.08 micrograms

If we back-calculate that, we find that in terms of tablet doses, we would need to take 35 micrograms of T3 to be equivalent to 125 micrograms of T4. That gives a T4:T3 ratio of about 3.56:1.

That is, the headline dose ratio between T4 tablets and T3 tablets is significantly higher than the ratio between the active ingredients which have been absorbed.

If we go a little further and imagine what would happen if the absorption of T4 was 70% (rather than 80%), the dose T4:T3 ratio goes up to 4.07:1. If T4 absorption were as low as 60%, that ratio goes up to 4.75:1.

Our assumption that one third of T4 converts to T3 could be optimistic. If the effective conversion resulted in 4:1 ratio, then the dose T4:T3 ratio would rise to 4.7:1.

Conclusion

Small changes of just a few percent in the absorption of T4 and T3 medicines and/or changes to the amount of T4 that is converted to T3 can result in significant changes to the ratio of doses of tablets that a patient would require. Such changes could occur due to different makes of T4 and T3, changes to your health, or for other reasons.

Many factors are totally ignored here –it is only meant to illustrate how T4:T3 equivalence is dependent on multiple factors.

GKeith profile image
GKeith in reply to helvella

The thing that attracts me to T4 only is the fact that I could then at least see something in the blood tests. Thyroid disease has so many symptoms that causing psychological problems as well, can too easily happen although the majority, I believe, maybe 90 %, is simply factual but too many doctors are blind to this. Taking T3 disallows you the ability to see if it is converting from T4 & thereby you must "feel good" or risk death, due to this inability to at least be able to point to the blood test with a modicum of reliability of truth to point to as today, in 2020, doctors appear to me to be simply men or women who have created a system that allows them to pour drugs of which they know little about into a human body of which they know even less about because they have lost their common sense in their rush to pick the money off the money trees, a.k.a. patients.

DippyDame profile image
DippyDame

Why were you prescribed T3?

100mcg T4 plus 30 mcg T3 is a hefty dose of hormone.And I'm speaking as someone who has taken 200mcg T3-only!

Are you sure you have not become overmedicated?

This can lead to a converse response with returning symptoms

I'm not sure your endo is fully conversant with thyroid disease

T3 is not the panacea of all ills, it is a powerful hormone and must be respected

Personally I would stop taking the hormones for a week, during that time do a rethink

Check all your old test results.

Work out if your conversion is poor ie check results before you added T3

Look for high FT4 with low FT3

Note where your FT4 and FT3 sit in their respective ranges....for good health that should be close to 75% through

That break will clear most of the T3 from your system ( I dropped from 200mcg T3 to nil for a week and felt no ill effects. I wanted to adjust my dose and my GP suggested this)

Then start again .....but dose would depend on current labs!

I'm afraid following your dosing protocol is difficult.....it's all over the place

Ah! I've now looked back at your earlier posts -

14 days a go you stated that you were on T3 only BUT you say above you are on 100mcg T4 with 30mcg T3

No wonder your body is rebelling, it is totally confused by change.

You added the following results for a test approx 3 weeks ago

T4, Free, is 0.64, while range is 0.82-1.77

T3 Free is 200 ng/dL, while range is 71-180

At that point your FT4 was below range and your FT3 was over range so why were you prescribed more T3?

I'm surprised your FT4 is so low with 100mcg T4.....you may have a problem absorbing T4 from gut to serum

Do you take your dose as advised here....away from food and drink?

You may also have a conversion problem.....difficult to establish with erratic dosing

As I suspected you appear to be taking far too much T3. I find it hard to believe you were prescribed 540 T3 tablets, here in the UK getting a prescription for a small dose is often difficult !

Then, still 14 days ago you further state, "I am currently taking no prescribed medication'

Sorry I cannot make sense of what you are doing....hopefully someone will be able to add more.

You need to see a thyroid specialist who can work with you and monitor you regularly, to get you back on track

I also think you need to go back and re-read the replies you have been given since you arrived here.....lots of good advice there.

Good luck!

GKeith profile image
GKeith in reply to DippyDame

The 100 mcg T4 was prescribed with 20 mcg T3, because even though it was 10 mcg T3 I personally asked for 20 and got it. I got addicted to T3, was reading too much of Paul Robinson and began taking T3 only. I know, man, I'm stupid, it's MY FAULT but that's how I reacted at that time? As far as my former clash with my doses, of course the T4 was absolutely at it's all-time lowest and the T3 (obviously from someone taking T3-only) was at its all-time highest; I expected it but not the terrible thyroid-storm-like headaches. I never wanted to take ANY pills, 30 years ago and debated with myself for years & years, as I took but one pill .88 mcg's of T-4; for 28 years. You wanna blame me go right ahead: I deserve a large chunk of blame but just also remember this: I saw a half-dozen GP's & but one endo during that time and not one of the GP's, all of whom claimed to be very "conversant" in thyroid "intelligence" had (obviously) not even a "basic" understanding of the thyroid. It was actually, to go back 28 years, a nurse, not a doctor, taking my temperature that observed that I should be even "checked" for hypo, which I was and then, as I've repeated, put on 88 mcg's of T4 for (life) 28 years straight. The rest of my story is all about T3, adding it and then raising the T4 by 25 every 3-6 months until I arrive "back" on T-4 only at 125 mcg. I always figured it at 150 and thus my thinking on asking for 20 T3 but, now, I'll take the lower T3. I now believe I might fare better on NDT but will be happy on T4 only if it is feasible and I can last on getting back on one dose of T4, I would be escatic. I just think my thyroid has been so over abused and I am totally worn out with these doses just to get back on T4 alone. The Capitalist medical profession is obviously, to me, totally "satisfied" to sell Big Pharma T-4 only because of the HUGE PROFITS they all make on the Levothroid. Of course, all medical "professionals" are "conversant" supposedly with the medicine they "practice," RIGHT? Well, then why did it take a nurse to even figure out I had hypo when the room was full of doctors that were all too busy prescribing pills to throw into the throats of their patient's and who had nothing on their minds but playing golf that afternoon, as they got their patient to "accept" his diagnosis; so they could get back to "business?"

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