This is my personal story and why I believe I had RT3 issues. (updated 01/15).
There are more causes of Tissue resistance than RT3. This leads to people, whether self treating or with a Dr's assistance, increasing the levels of T4 meds or Natural thyroid until they feel well. Unfortunately this only works for a while, for me this was my start along the thyroid road, I needed 6 grains of Desiccated Thyroid to feel well when I started treatment. This was OK, the upper end of the normal "3 to 5 grain typical range" and I felt better than I had for years. The problem with this is that I had too much T4 slopping round in my system my body was behaving as though I was hypERthyroid and started producing RT3 which slowly blocked receptors. I didn't not understand this at the time, the Dr I started with was forced to stop prescribing as the GMC in the UK hated people thinking "outside the box" and actually helping people feel well. (Drs in the UK who have discovered that their training might have gaps in it and who work to help people get persecuted,
The result of this RT3 building up is that resistance built up and I found I needed more natural each year to eliminate symptoms. By every lab test I would have registered as hypER and yet at a cellular level I was still hypo, my temperatures were stubbornly low. 10 years down the line I was taking 12 grains a day of Natural (that is not a typo, that was 12 grains a day taken in 4 doses) and that left me functioning pretty well, running a successful business, and able to think. Before I started the thyroid treatment I nearly lost my business thorough not being able to think straight.
When Armour reformulated I was one of the first to get the new formulation and felt very strange as a result, a mix of hyper and hypo, I was very brain fogged and yet didn't feel safe to increase. Luckily I had some other natural left when I started the new batch of Armour and was able to swap back. Initially I wondered if I had an infection coming on. I swapped back and forth a couple of times to prove it to myself that it was the Armour. I then ordered more Natural Thyroid of various brands to be on the safe side and at the same time started searching the web for other people having problems with "New Armour". I found one or two and then a rush of them as people people had new deliveries. I even phoned Armour in the States to ask what they had done and check it wasn't counterfeit. They confirmed they had reformulated and claimed it would make no difference. The internet was buzzing by this time with people not doing well on the "New Armour" and it was reassuring to know it was not me. (updated 12/12).
In the process of discovering all the new thyroid resources that had sprung up on the web since my days of thyroid searching (my original resources were Usenet, "Alt.support.thyroid" was where I hung out in those days) I discovered there was a Yahoo group called Reverse T3 dealing with thyroid resistance. I joined that, lurked for a while, started correspondence with Val, and then ordered some T3 and started on it. This was in Spring 2009. I followed the usual protocol that is now documented in this web site, had a couple of bumps along the way, and hit what we call "clearance" at around the 12 week mark. I then lowered dose and have re-established dose since then and added some adrenal support. I feel good, the best I have for probably 40 years, I have energy through the day and have started socialising in the evening again and going folk dancing. I have stamina now, no longer have air hunger, can walk up 5 flights of stairs without suffering, and am generally doing very well. (see below for updates)
The interesting thing is that I still need far more T3 than the normal "75 to 125" that works for "most people". This is my own evidence that I have some other form of "tissue resistance" and that I personally need a lot more circulating T3 to break through this resistance. The good thing about being on T3 though is that this resistance does not build up and get worse. This is why I believe that the only way of treating tissue resistance from other causes is to go onto T3 only and stay there (updated 12/12)., any other way will cause excess T4 which will convert to RT3 and make the resistance worse.
Since I cleared in August 2009 Val asked me if I would help out as a moderator in the RT3 group and I have put this web site together as a resource for people going down the journey of thyroid resistance.
Updates December 2012
I am still on T3 only, I adjust dose to suit how my metabolism is behaving. I am going to define some terms here which I will use in the next part of my story.
From Autumn 2010 when I last updated this site (been meaning to do it for ages) until Autumn 2011 I had a very good year with energy and focus. Cortisol and T3 were working for me and there were no complications along the way.
In Autumn 2011 I started going down hill a bit, physical stamina was lacking, stairs were becoming a challenge, and my normal winter routine of looking after my horses became harder (this is my relaxation when I am not working). I had to keep stopping for breath all the time, I was very unfit and yet couldn't do enough exercise to get fit. It got worse and I ended up in the stupid state where I could breathe freely (so not asthmatic) and yet felt I couldn't get enough oxygen from the air into my system. One night I was laying in bed feeling like it while totally at rest, a scary feeling. When I was out and about I couldn't walk more than 30 yards without stopping to get my breath, a very frustrating state to be in.
It was a place I hadn't been in before so I wasn't sure what it was, my thought process was that it was iron that transports oxygen from the lungs round the body so it may be VERY low iron. I didn't want to supplement iron at random as I knew an overdose was bad for me so wanted labs first.
I went to my GP practice (who did not know I was on thyroid, I started privately before that Dr became my GP), saw a nurse practitioner (last working day before Christmas, all the Drs were busy), explained the symptoms and that I thought it may be low iron. They did a barrage of tests, ECG, listened to heart and lungs, etc and took lots of blood. My heart checked out OK as did everything else they checked on the spot. The blood was sent for analysis.
I then thought that, if my theory was right, it was time to start iron before the lab results came back, I couldn't overdose in the time the labs would take to come back, so I started on lots of Solgar Gentle Iron iron Byglycinate which is the UK available equivalent of the Blue Bonnet that is recommended by the group.
Lab results came back eventually and they had tested for thyroid without telling me! I had already taken 50mcg of T3 that morning so numbers were very skewed. They summonsed me in to explain why my FT4 was extremely low, TSH under 0.01 and FT3 through the roof! I explained my history and the protocol and I was extremely impressed that the Dr was interested and supportive. Full marks to him.
The really interesting part was that by the time I got in to see him I was starting to feel better and was having a "slow motion thyroid dump". The iron was releasing some of the pooled T3 that the resistance was keeping out of my cells, a least in part my resistance was CAUSED BY low iron. I stopped T3 completely for several days before starting to ramp up again.
I was then very disappointed to find that when I went to the Drs and said I thought I had low iron they didn't test for iron! They were relying on Haemoglobin and Haemocrit to diagnose anemia and didn't test for iron.
The Dr asked me where I wanted to go from there and I suggested that I carry on supplementing iron as it was making a difference and retest iron in 2 or 3 months. He seemed to think that was as good an idea as any so we carried on from there. He filled in the blood request and on my request put down serum iron and saturation % as well as Ferritin.
I built back up on T3 as symptoms required it and ended back up on a similar dose to before I started iron, the low iron was not the dominant cause of my resistance issues, just a bump along the way. After 3 months I stopped iron, it took me 3 weeks to get into the Drs and get blood taken as I kept working away. I got the blood draw done, restarted iron, and ended up with a mini thyroid dump again, I obviously needed a lot more iron than I had built up so far!
I got the results back and went to see the GP, they had tested Ferritin and no other blood parameters. It seems the labs over rule the NHS Drs in the UK. The Ferritin. was in range so the Lab rationed the Dr and decided not to spend tax payers money doing other tests. What a way to run a health service, the labs over ruling the Drs. He was apologetic and said we could try again. As I could tell I needed iron still I said to leave it a few months. He was fine by that and filled in the lab request on the computer. At my suggestion he put that serum and saturation were required as "patient was supplementing iron heavily and Dr concerned he will overdose". This would justify why they were needed if Ferritin. OK. This was in April.
I did very well across the summer for a very busy time at my day job with long hours and work away from home. I kept up the iron at 100mg a day taken with 2 grams of Vit C and generally did well. In October I had a brief burp of some sort and went hyper. Stopped supplementing T3 and iron and let it all calm down again. I thought as I has the blood forms lined up this would be an interesting time to get labs done, to see if it was a thyroid dump from sources unknown or a thyroid surge. My theory is that a surge would cause T4 to increase as well as T3. This blood draw was after 2 days with no iron or T3. The iron result would be skewed high by only stopping for 2 days.
Lab results came back and were interesting, Serum iron was near the bottom of the range, saturation 28%, Ferritin. over 500, FT3 dead on top of rage, FT4 almost nil. The Dr was interested in what I thought of this as he didn't really have any ideas.
To me it confirmed
After this we did more tests, B12, Folate, and C Reactive Protein.
What interests me here is that the B12 range is much lower than other countries, they are typically up to 900 or 1000. My 400 looks rather low in range if you take the top of the range higher.
I am going to ask for B12 shots and see what happens, he may let me have some.
In the mean time 8 weeks after that thyroid surge I am not yet back to the previous T3 dose, I am high but not stupidly high! Something has changed metabolically and I don't know what.
A couple more interesting things from this journey:-
Watch this space for further updates as I find out more.
January 2014, another update
It has been a very variable couple of years but I have identified more pieces of the puzzle for myself, I don't have all the answers yet though.
Iron metabolism has nearly as many complications as Thyroid. In order to absorb and utilise iron lots of things need to be in place
Vitamin B12, My Dr was supportive with Jabs every other day for 2 weeks and then monthly jabs. This helped
Folate, Methyl folate helps the B12 function and iron absorbtion. Methyl is preferred to Folic Acid
Vitamin D, I have been finding a "seasonal trend" to my low iron symptoms. Starting 6000IU of Vitamin D a day helped this and led to a "mini thyroid dump". It seems that Vitamin D is involved in the iron system and lack of it in the winter led to low iron symptoms
Lots more pieces to the puzzle and more to find still.