Since my last post I’ve asked Dr for copies of blood test results. They said they will send me a summary. In the meantime they have referred me to an Endocrinologist at St Richards Hospital in Chichester. Apparently I have no antibodies and my T3s are in midrange. My TSH is slowly coming down and I have had Levo increased to 75mg per day. I was told my Vit D was low but that most people had a low Vit D but at least I know do I can take some supplements at home. All in all this is good news and I should be feeling better but I’m not yet.
Moving forward slowly : Since my last post I’ve... - Thyroid UK
If your vitamin D is under 25nmol GP should prescribe loading dose. If under 50nmol they should prescribe 1600iu
Aiming to improve vitamin D to at least 80nmol and around 100nmol may be better .
Vitamin D mouth spray by Better You is good as avoids poor gut function.
It's trial and error what dose each person needs.
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Local CCG guidelines
Government recommends everyone supplement October to April
Post results and ranges of vitamin D, folate, ferritin and B12 once you get them
Good that dose of Levothyroxine was increased to 75mcg
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Bloods will need retesting again in 6-8 weeks. This continues until TSH is around one and FT4 towards top of range and FT3 at least half way in range. Vitamins must be optimal too
Likely further increase(s) in Levothyroxine likely
NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
I have a genetic variant that produces an antibody for which they don't test -- I have Hashimoto's but "no antibodies."
If you have funds for the 23andMe Health and Ancestry, I'd do that and check for DIO genetic variants that will prevents the recommended tests from detecting the success of treatment. I have variants that require me to take T3, as LT4 won't work. It only makes me sicker after a while. First the dose increase of Levothyroxine made me better, and then after about 10 days it made me worse.
See if you can get the rT3 tested too. If rT3 goes up with an increased dose of LT4, you have the genetic variant that impairs conversion of Levothyroixine. My endocrinologist nearly killed me before I figured out what was going on. Now I'm doing well on T3.