I was diagnosed with an under active thyroid in October '17 and prescribed 25mg levothyroxine. I continued to feel exhausted, achy, tearful and rundown, my blood was tested and my dose put up to 50mg. I returned to my GP in February and was told my bloods were 'normal'. I explained to him that I was feeling worse (sore throat since January, joints hurting, exhausted, extreme cold, hair starting to fall out etc etc) and he reluctantly referred me to an endocrinologist.
I pushed for new bloods to be taken and have asked for a print out; they are as follows:
Anti-TPO Antibodies 317 iu/ml (<34)
TSH level 12.54 mIU/L (0.27 - 4.2)
Free T4 level 18 pmol/L (12 - 22)
My apt is next Tuesday - any advice prior to this would be greatly appreciated...what should I expect from the apt? What questions should I ask? Should I push for any different blood tests or follow ups?
Thank you all in advance x
Written by
Lotsofkids5
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You are woefully undermedicated. You should be angry with the GP for permitting you to suffer even more due to such a low dose - and the Endo for suggesting 25mcg when 50mcg is a starting dose.
The aim is sufficient thyroid hormones to bring TSH to 1 or lower which means a blood test every six weeks with a 25mcg increment of levothyroxine.
I would ask for a Free T3 blood test. The reason being it is T3 only which is needed to enter our millions of T3 receptor cells. Levothyroxine (T4) is to convert to T3 but you may be a very poor converter and without enough T3 we have symptoms. Antibodies can be reduced by going gluten-free.
p.s. on re-reading I see it was GP who prescribed 25mcg and has referred you to Endo, so hope he is good.
Many thanks for you reply; yes I am pretty angry but also very relieved that its not all 'in my head'! Am hopeful that my medication will be upped tomorrow and I will finally start feeling better soon
Then dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range. Typically most patients eventually need between 100mcg and 200mcg
Bloods should have been retested 6-8 weeks after your dose was increased to 50mcg. Then dose increased by 25mcgs and whole thing repeated until TSH is around one.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
You high TPO antibodies confirm you have Hashimoto's also called autoimmune thyroid disease.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working
Highly likely to have very low vitamin D, folate, ferritin and B12 as result of being extremely under medicated
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Ask for coeliac blood test first, just to definitely rule it out. Otherwise they often want you to go back on gluten for 6 weeks to do gluten challenge
If coeliac test was positive you have to stay on gluten rich diet until endoscopy, max wait 6 weeks
Majority are gluten intolerant not coeliac. So test is negative and can then go strictly gluten straight away
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Advice please
me again 😔 Really sorry to drive you all mad. Having one last go with GP before I go private. Seeing a different GP. Advice please X 
Can I ask for advice please
Any advice please?
Further Advice Please before GP Appointment
