Hi so my appointment yesterday went well. The doctor increased my levothyroxine to 75mcg from 50mcg then a retest in 6-8 weeks and apologised for my results being so bad and said “they must have slipped through the net”. I said that wasn’t good enough and I have insisted my thyroid results are checked more thoroughly next time.
I also asked for more investigation into my ferritin being so low despite taking 3 ferrous fumarate a day and she said the most likely thing is either because I am still hypothyroid or that I am not absorbing the iron tablets so she has referred me for an iron infusion to be done at haematology and is testing me for coeliac
I told her I wasn’t happy with my previous doctor telling me my folate level was below range with no prescription for folic acid and I said what is the point of having reference ranges if doctors don’t use them. She agreed and prescribed me folic acid to take once a day
The doctor has tested me for pernicious anaemia and started me on B12 loading doses, also given loading dose for vitamin D which will be 300,000iu weekly and then maintenance dose of 800iu every day after this.
Hope this all sounds ok?
Thanks
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Chantele
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Good outcomes - I'm going to defer to others but I'm wondering if you would be well-advised *not* to start the folic acid supplements until after you've had the results of the test for PA back? Just in case you need another B12 investigation for which that might complicate the evaluation?
I gather you'll need to keep eating gluten up until you've had your tests for Coeliac's?
Yes sorry I forgot to add that. The folic acid I will not be starting until the perinicious anaemia result. And I will have to keep eating gluten as well.
Coeliacs test is likely to be negative, but with Hashimoto's over 80% of us are gluten intolerant. So regardless of coeliac test result you will need to change to gluten free diet
Push the GP to give you date for endoscopy, it should be ASAP. That is the least they can do after such appalling care.
Vitamin D loading dose is good. You will be well advised to follow SeasideSusie's advice on also taking magnesium and vitamin K2 as well.
Maintenance dose is very likely going to need to be higher than 800iu. With Hashimoto's we need or use more. You will need to test twice a year until you see what dose you need to keep stable.
Been on 75mcg Levo since 1991, dose never changed despite annual tests. Only recent change has been advice to take with water on its own leaving at least half hour either side during which eaten/drunk nothing else, except water. As for vitamin D, we're all different but I've stabilised (blood tests show satisfactory levels) on maintenance dose of 3000iu/day, DLUX oral spray. Have heard some doctors say B12 and D mouth sprays not well absorbed but B12 sublingual spray + D spray inside cheek have worked well for me as borne out by tests results.
Before blood tests we have to leave about 24 hours gap between last dose and blood test and take it afterwards. This gives us a better reading. It should also be at the very earliest possible, fasting (you can drink water).
Have you been tested for pernicious anaemia before supplementing with B12. The reason being that P.A. should be diagnosed by testing the intrinsic factor. We don't want to be given supplements before confirmation as the supplements could mask a very serious deficiency.
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