I have Hashimotos disease (looking at my blood test results I think I have had an underactive thyroid for over 20 years)/ I started to put on weight when I turned 40 and have looked at my blood test results from that time and TSH was 3.8 (range then 0.3-5.0) and T4 was 11 (range then 9.0-24.0). It became Hashimoto’s when my mother and my husband died within 6 months of each other (although as antibodies were never tested, I will never know). It was extremely difficult time, battling the NHS for over 6 months for my mother who was profoundly deaf and also looking after my husband who died within 3 months of being told he had terminal bowel cancer. I believed at that time that I have adrenal fatigue, but was dismissed by endos, who had no idea what I had been through and didn’t really want to know.
I have been on levothyroxine for almost 7 years since the Hashi’s diagnosis. Over this past year HbA1c has now increased over this past year to 47 (1 point short of being diagnosed as T2 diabetic). My GlycoCaresberberine blood sugar support pressure has increased too, although my heart rate has always been in the 50s/60s (very occasionally in the 70s) and my basal temps are low too. Earlier this year after being on 150mcgs of levo and still having extreme fatigue and difficulty losing weight, I was finally prescribed T3 to be added to my levo of 150mcgs (was told to reduce to 100mcgs). I did this and initially saw a slight improvement in fatigue, but in the meantime, I did the genetic test for DIO2 and found out I am heterozygous for DIO2. The endo said I could increase T3 to 30mcgs. I did this and immediately put on nearly 1 stone in weight in a month and started to experience edema (pitting of the skin).
I came off all meds for 10 days and had a blood test. My TSH raised to 9.7 (proving that there is no problem with my pituitary). I started on levo and gradually raised it back to 100mcgs and then added T3 in first 10mcgs and then raised to 20mcgs. Through following a very low calorie diet, I have managed to lose the extra weight I gained on the T3 increase, although it took me a month to do it. My endo said I could increase levo to 125mcgs and I have kept T3 at 20mcgs. He actually admitted that TSH is irrelevant when on T3 and that I am one of the 20% who still struggle when my bloods are in "normal" range and that I would probably feel better at the top end of range for T4 and T3 (I did manage to lose 3 stone when I was top end of normal), but I was left with no endo support for a year and as my thyroid continued to falter, my meds were not increased and so I gained all the weight back as well as becoming increasingly hypothyroid.
At my last appointment in October, the endo suggested that I medicate to how I feel! I do feel a little better on the newest dose, however, I am scared to raise the T3 as I’m worried about edema and weight gain again (which would of course increase my blood sugar and blood pressure). No one seems concerned about my weight, my GP shrugs his shoulders and says it’s your thyroid. He’s admitted he doesn’t know how to treat hormones. I have resisted going on meds for my high Glyco Care blood sugar support pressure, but I’ve had a letter from my GP following my last blood test which shows HbA1c of 47 and I think they’re going to suggest medication. I also have Thyroid Eye Disease(for almost 3 years) and have proptosis in right eye and lid lag in left eye. They were extremely concerned about my eye pressures but they have reduced a little with special overnight eye drops. The hospital say that TED is now inactive and that I can be scheduled to have an operation on lid lag eye. Since my Hashi’s diagnosis in 2012, I have calculated that I have seen 14 endos/nurse practitioners (excluding GPs and eye specialists) and I seem to be collecting other issues along the way. The upshot is I am about 4 stones overweight, have unmedicated high blood pressure and unmedicated pre-diabetes. I have also been diagnosed with a small posterior fossa meningioma (discovered at the MRI for my TED) for which I amon watch and wait. I have Dupytren’s contracture following a broken wrist. The good news is that the osteopenia diagnosed from a DEXA scan at the end of 2015, has reversed at my last scan in May and I now no longer have osteopenia. My spine is normal and my hips are low, but normal.
Mood:must go to bed. Left Masterton around 11.30am as we had heard there were roadworks just south of the Twin Bridges at the bottom of the Rimutaka Hill Road, however there was hardly any delay there at all. The new road on the Kaitokes is progressing well. There doesn't look to be much to go now and I would say we will shortly be driving the cutting in the hill. During Robyn's daily radiation trips, we watched the hill be "downsized". Arrived at the Wellington Cancer Society carpark in good time. We were surprised to see the new building development at Wellington Hospital - across the road from where we parked. It is still in the tear down stage and the rooms we used to visit are now being torn down. After getting a chest x-ray done, we had our first visit to the recently opened Cancer Outpatient Department. That has been the first part of the new hospital to be built and the rest of the new hospital will be built around it.