6 months on ERFA thyroid update

[LazyMoose]

Its been 6 months now since I started on ERFA Canadian Thyroid, feel a lot better. Completely normal.(?)......well,I dont remember what that feels like, so I guess it doesn't really matter! - the goal for all is to just get close. Half of the battle was finding a doctor that wont freak out over a low TSH and understands that ' free T's' are more important.

Some history: After 10 years on synthetics (all but the new gel cap) I switched to dessicated. December 2009 was the best I felt in 12 years on generic Armour by Time Caps, until it was discontinued.

Jan '10 Went on Nature Throid, felt odd, then got reformulated Nature Throid Feb '10 and went down hill very fast. Note: new Nature Throid still works for many people, I am not one of the lucky ones. Had FT4 below range, FT3 high in range, TSH in 50's.

I looked and felt like death warmed over ( People even commented).  I also started a new job at the peak of hyponess - not much fun. Testosterone severely dropped and fasting Glucose went into pre-diabetic range 105 -110. YES It was all from thyroid. I have always been a physically fit adult (when not hypo), Hashimoto does not care who you are. Could only sleep 2 hrs per night for 3 months - felt hyper and hypo at the same time. The turning point was when I awoke one morning in May and all light was 1/2 dim for 15 minutes regardless how close I looked at a light fixture. That was really weird and I have yet to read about that particular vision episode here from anyone else. I then started ERFA dessicated against my endos opinion, since I had acquired some without his approval. I later was granted his approval - after I went on it myself. (kids dont do this at home!).

I was unable to fully enjoy summer activities from lingering hypo symptoms, as my whole body still hurt, threw my back out, tendinitis at hip, ankles and wrists, still had hot / clod flashes till August with sleep problems. Thats how long you can still feel symptoms even months after starting a med that will eventually work.

So people just starting, take note: its all about being patient and taking charge while being knowledgeable about this disease. You need to know as much or more than your doctor. I know hypothyroid people that are not themselves anymore. Not close friends so I limit offering help as these people have the "Dr knows best mentality" - WRONG! They continue to be clueless about their health, and dont even know what Hashimoto or "that T test thing"is.

I tried 'the best endo in the state of Mn' - last month. Big mistake. Looked at TSH and  wanted to decrease my ERFA. I left after after explaining to him he was wrong the way he has treated thyroid for the last 30 years.

Found a regular MD two weeks ago, who does not get freaked out over low TSH with patients taking additional T3 med ( the other three at my general physician clinic are TSH worshipers and one even asked me what Armour is).

Back to ERFA - it still has a higher T3 to T4 ratio compared to my old generic last year and even original Armour, but not like my experience with Nature Throid.  I feel way better. My TSH needs to be very low in order to have any FT4 in range.  I basically exist on the T3 in ERFA, I don't think I get enough T4 in me to convert to T3. This is obvious when the T3 effects ware off in 4 hours, so I now take ERFA 3 times per day. 1.5 grains 6:30 AM, 1/2 grain 11:30AM, remaining 1/2 grain at 3:30 - 4PM. Cold and tired by 9PM.

Labs 11/22/10   9 AM, fasting before thyroid med: 120 mg ERFA daily

TSH   .41    ( .4 - 4.5 )  -old range I know, its tsh who cares?
FT3    3.7    ( 2.3 - 4.2 ) upper third
FT4    .8      ( .8 - 1.8 )   its been on the bottom the last 6 months
fasting glucose  94.3    (best under 100)


Happy turkey day (no health eating today!)

LM

[LazyMoose]

For me two months on original Nature Throid had a weird feeling, then I think I got the new stuff with a new bottle - just did not work for me. T3 was much higher, more than ERFA. ERFA feels better in me and seems to result in more stable lab test results. Maybe it absorbs better (no microcrystaline cellulose).

Taking it 3 times per day is a hassle but it works best for me and I've needed thyroid stability since last February. I still feel better every month. The true test will be snow skiing soon  - heart rate, breathing and muscle recovery. So, I dont think further increasing or adding T4 would be good at the moment, it was a thought. The last increase this summer was a gamble in two endos eyes, after insurance change, the third endo wanted decreasing this fall and sent a letter to my clueless GP. So I changed my GP too, and found this non TSH worshiping GP that will listen to me and 'gets it' that I 'get it'. A lot of time and $. Should not be this difficult, as we know.

[LazyMoose]

"So how did you know what dosage to stay at if you felt crappy for the following months?"

- I had quit a few lab tests. I restarted on EFRA at a lower dose since I was very messed up - so I was purposely at a hypo dose and upped 15mg every two weeks. When starting or upping meds, labs do not necessarily correlate with symptoms. So it is partially a good guess. Since ERFA also has the same amount of T3 and T4 as the other dessicated brands, I did not go over my max daily dose from the past. My main goal was to get free T3 in the upper third of the range, since that's wear I felt best a year ago.

I had a known past target to aim for. If you are just starting, try getting free T3 in the upper third of the range while paying attention to possible hyper symptoms.

[alfonsina]

I am glad your are feeling better.
My numbers look a lot like yours. Because I am on NT my FT3 tends to go up fast and FT4 is always at the bottom.
My TSH is supressed.

Are you thinking about doing something with the FT4 to bring it up? maybe adding some T4 medicine only,  or you feel good enough to not do anything about it?

I have always wanted to have my FT3 in the upper range and the FT4 in the mid, but it is been very difficult to regulate them despite what others say about T3 and T4 combo.

I know symptoms are one of the most important things...

[toots_jwu]

wow it was great to read your story.  It's almost similar to mine.  So how did you know what dosage to stay at if you felt crappy for the following months???  I mean wouldn't you accidentally up the dose thinking that the current dose was too low??  I mean i'm one of those people who has normal looking thyroid tests (posters here even said they look fine!!) so I can't really dose by test results and instead dose by how I feel symptoms wise.  I'm just utterly confused.