Hi everyone, found this forum after leaving GP in tears and realising I need to try find information for myself.I was treated for an overactive thyroid 20 years ago with radioactive iodine and historically managed symptoms with a really understanding GP who's since left. My consultant told me to never rely on my TSH as "it baffled him" but to make sure T3 T4 levels all ok and listen to my body as it will tell me what's wrong. Historically I've managed on 100mg of levothyroxin.
Earlier this year I was eventually diagnosed with osteoporosis having requested a bone density scan. I'd broken 2 wrists in 18 months, had an eating disorder when in my teenage years and started the menopause at 45.. GP reluctantly agreed I potentially was at risk of it!!
Started on alendronic acid and calcium tablets together with HRT patches and progesterone tablets on a night.
I've put on over a stone, really emotional, but the worst is the unbelievable tiredness. Did raise levo to 125mg and tsh came down from 4 to 1. Mine is normally 0.01. Because its now in range GP will only test TSH. I've asked several times to request more detailed tests but because she can't tick one of the options to get T3/T4 basically tough luck. Oh but did offer weight management options!!? Had full blood test and apparently all fine !!
I've stopped the HRT and she told me to see how I go , I could also try stopping the alendronic acid to see if that's the issue.
I've since researched that I should not be taking the calcium at the same time as thyroid meds.. not mentioned to me before.
I'm an accountant not a trained medical professional, I am certain I'm under active and just need a little help or guidance as to what to ask for going forward . I never cry which again is a major red flag to me . Just want to feel like me again.
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makeItHall3n
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You can test yourself for the thyroid hormones, rather than rely on the GP..many of us do! Get a home finger prick rest and see where your T3/T4 are at the moment.
I felt the same on HRT, cried every day and felt awful. Stayed for 3 months but couldn't take it any more. Literally felt better the day I took off the patch. Well I stopped crying so much and feeling suicidal anyway.
Calcium definitely affects absorbing of levo, so maybe you'll feel better once your levels have evened out again (assuming your taking apart now?)
Thanks for taking the time to reply , the tears have subsided a little since I took the patch off. It's so frustrating as I only started them as it was supposed to be beneficial for the osteoporosis. Slightly concerning that she suggested stopping them and the alendronic acid too to see if it helps.. so need to balance side effects of thyroid with osteoporosis and hopefully don't fall over and break anything else ,🙈
I don't have the will to try any other HRT combos right now but it might be worth looking at changing to gel or tablets? Or even a higher dose? There are so many variables. You might need a more informed GP or specialist to go through these with you.
Thousands upon thousands of U.K. patients in similar position
If GP is keen to help…..
Request GP test vitamin D, folate, B12 and ferritin
Otherwise get FULL thyroid and vitamin testing privately
Do you always get same brand levothyroxine at each prescription
Do you take levothyroxine waking or bedtime
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease - wether after hyper with Graves’ disease or hypo with Hashimoto’s
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
Also VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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Low TSH level
TSH only blood test
Suppressed TSH
Beyond annoyed - only tested TSH
