, I’m new here...
I’m not sure if I’m on the right page to post this but I am a 56 y/o woman in UK with congenital hypothyroidism, diagnosed at 6 months, and enjoyed a level of care throughout life (with the odd fall signalling a meds increase) and moving from Eltroxin to Levothyroxine at some point but with no marked deterioration in quality of life.
Settled out at 250mcg dose for best part of 20ish years and tootled along quite happily. In 2009 my hospital doctor retired and no-one replaced him so I was obliged to go on NHS thyroid register at nearest town Infirmary. I expressed my fear that meds would be reduced based on bloods and not on personal health. Worst fears were confirmed and over next four years meds reduced consistently until I was on 150 mcg and suffered debilitating fall on concrete driveway.
I had felt pressured by GP to keep with the consultant (a man I never even met!) and I decided that if I were to have a fall I could at least show proof the lowered meds weren’t working. (Photos of the subsequent damage are available to show my point.) After the fall I suffered bruising to my right side face, arm, ankles with subsequent tearing of ankle ligaments on r/side showing on MRI after 3 weeks. I wrote to consultant and GP with no joy so I decided then to find help as I was overseas and I gradually returned to 250mcg in 25mcg increments over six month intervals. As of early 2017 I felt happy and healthy again despite the lingering ankle issues, but my overall well being was palpable!
As my hubby retired and we returned to UK I had to rejoin the medical Merry Go Round to get my prescriptions, and sadly the new doctor at the same Infirmary is starting to reduce my meds already! I agreed to go to 225mcg but am feeling pressured to lower to 200mcg, and afraid, and I want to know why it is so wrong to be on 250mcg if that dose has proven to work for me. Am I so wrong???
The doctor explained about bone loss and heart issues, but I am more likely to fall and break bones in a lethargic and uncoordinated state, and my heart seems just fine.
Consistent admin delays are proving to be stressful, leaving me sure that I want to return once more to the dose that gives me peace of mind and good health. All I feel now is stressed and frustrated. I had a bone scan and an ECG in January this year but the h-art results were not available on screen or in print by my last appointment in June! The bone scan showed that I have pre-osteoporosis but that doesn’t worry me to much in connection with the continued 250mcg dose as I have a greater fear of falling again through lowered dosage than I do of developing osteoporosis in full but being of sound enough mind to watch what I’m doing! A previous ECG showed no issues to raise concern about treatment.
GPs at the local practice and the current consultant have all mentioned depression…I am NOT depressed…I’M FRUSTRATED!!!
Having read other posts on HealthUnlocked I will add the last two blood results I have received, both at 250mcg as due to admin delays I had not received a revised dosage notification and the GP would not change the dose without confirmation. (I am also hoping by to obtain blood results from 2009 when still in care of past doctor for comparison.)
I have in the past also had 4 pregnancies of which one went to 8 months and required an elective c-section due to Hydroceohalus in foetus. Two were miscarriages, and the last was a tubal abortion. When asked if my hypothyroidism was an issue I was told no. As my daughter’s primary carer 24/7 (due to other health issues) this is another reason I need to be functioning.
As I started the 225mcg reduction on 1st April I am already feeling symptoms such as hoarse voice, swallowing issues, laryngospasms, balance issues, and loss of concentration…pranged my car this morning!!! There are other things I’ve probably forgotten to mention but I hope what I have written gives some idea of how terrified I am to be at the edge of the proverbial black hole again.
With regard to the blood tests, I am still waiting for the results of bloods taken on 11 June. This appears to be the norm for the local area! In the meantime…
27/11/17 @ 250mcg – TSH <0.01mU/L and FT4 28.9 pmol/L
15/03/18 @ 250mcg – TSH <0.01mU/L and FT4 27.6 pmol/L
The reports received for both dates stated that other bloods and renal functions were all normal, but give no readings. My last health check showed normal for diabetes and cholesterol. The consultant was supposed to advise on VitD and calcium but still waiting on that!
Sorry for rambling more than I planned but any and all replies will be welcome, thank you.