I've been more of a lurker/reader on here until now and have picked up some great advice over the months so hoping maybe someone could help me as to where to go after a pretty bad Endo appointment that I've just had. Sorry as it's probably a bit long and rambling as I feel stuck as to what to do next.
As a bit of background, I was diagnosed hypothyroid back in February of this year with initial results of:
TSH: + >200.00 (0.35 - 5.00)
Free T4: - <5.0 (9.0 - 21.0)
TPO: + > 2000.0 (<6.0)
After around 7 months and a Levo dose increased up to 150mcg, my GP said that my results were where they should be and, since then the TSH has been generally between 0.03 and 0.09 with Free T4 around 20.9.
Before being diagnosed, I was extremely tired despite sleeping loads and, weirdly, kept forgetting things right when I was in the middle of doing them. For example, I would turn a tap on in the kitchen, go through to the living room to get the dirty dishes, but sit down and start reading a book then only remember the running tap around 20 minutes later or when I walked back into the kitchen. Even during the 2 second walk from one room to another, I completely forgot what I was doing. Also, my reactions/understanding of situations feel totally wrong. I can walk up to cross a road where cars are coming towards me and it's as though my brain can't process this and I feel like could easily walk out into the road in front of them. I tried to describe it to a friend as being like times when you have something weighing on your mind and you suddenly realise that, due to thinking about it, you've not taken in anything around you for the past 10 minutes and have done everything on autopilot. This is what I am like all the time though, even when concentrating!
On Levo, the extreme tiredness has got slightly better, but I still need around 10 hours sleep to feel normal so it's not brilliant. The memory thing has really not improved though, which is why my GP referred me to the Endo. I had my appointment yesterday at the hospital and I tried to explain how I felt. The Endo didn't seem to take it in and started asking if I felt cold or constipated (no). He then wanted to do my blood pressure and kept asking if I felt dizzy when standing up (occasionally). He discussed adrenal problems but said that he didn't think I'd have that, though I've to go back to do a Cortisol test to rule it out. I kept trying to steer him back to the memory/mental function issue and he told me that having an underactive thyroid may have damaged some of my brain cells so it might just be how I am now! As a last ditch attempt, I questioned him about T3. He answered that "T3 has nothing to do with an underactive thyroid and that the body only needs T4 which you get from your medicine and your TSH shows this is fine." He said that there is only a T3 test option shown on labs so that it can be used to prove somebody is hyperthyroid but it's a test never used otherwise. Then that was it, end of appointment. I've to go back in May 2014 for one more appointment where he said he may refer me to neurology for a scan for those "damaged brain cells" but basically the outcome was "You look fine" and that Levothyroxine was suitable as the TSH was okay.
I'm at a bit of a loss as to what to do now. My GP is very good and had talked to me about other treatments such as T3, saying she has so many patients say they don't feel right on T4 only that they can't all be wrong. I think she has to go with the Endo's recommendation though. She tested my B12 which was said to be okay (don't know the result, sorry) and ferritin which was very low at 16 but I've been on 2x Ferrous Fumarate 210mcg for the past 4 months so it is back in range and going upwards all the time. The memory loss thing is really beginning to affect my confidence in myself as I forget things constantly in work and, if in a situation when I'm learning something new, I feel really jittery and wound up. Stressful situations with lots going on requiring multitasking make me feel like my brain is going into meltdown and I jump from one thing to the other without finishing anything whilst feeling panicky about it.
I wouldn't mind trying to get a private consultation but don't really know if there's anything where I am in Glasgow or how I would go about it. Somebody told me I could also for a second opinion but it would be at the same hospital and it's only a small department, plus the Endo I saw said that all cases there were discussed between all colleagues at the end of each day for them to agree on. Since my GP has been very good, I also don't want to rock the boat too much or cause problems.
If you've made it this far, thanks for reading and any advice would be greatly appreciated as I feel really quite lost now on what I could do next.