Hello to all lovely and knowledgeable people here !
So, I had my new endocrinologist appointment about 6 weeks ago.
I was really lucky as my new doctor is the one who can listen and talk to the patients. I gave him printed article about Long term thyroid treatment and he was interested to learn about it. I asked to do most of blood tests advised here. He agreed with my approach and was happy to gradually reduce my meds.
He advised to low Carbimazole from 40mg to 20mg and Levothyroxine from 75mg to 50 mg. I've started this new regime from the 1st of May, and we had a blood test done before that and then another one 4 weeks after being on a new dose.
Here is my blood test results from the 15.04.21 - while on 40mg of Carbimazole and 75mg of Levothyroxine.
FT3 - 3.5 ( range 3.9-6.8)
FT4 - 17.2 (range 11-24)
TSH - 3.24 (range 0.35-4.5)
Anti TSH receptor ab 0.80 (range 0-2.01)
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Healthylife21
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Continue here as couldn't add second photo Here is my latest blood test results from the 2.06.21 white been for 4 weeks on 20mg of Carbi and 50mg of Levothyroxine.
The results showing that my TSH jumped up and FT3 gone even lower.
If anybody can explain what does it mean?
Maybe 4 weeks on a new dose was not enough time?
I don't feel anything much different from before the cut of meds.
Well it's good to see your Graves thyroid receptor antibodies in range in April, what levels were they at diagnosis - I can't remember ?
The endo has halved the dose of the AT medication so let's hope the antibodies stay low and in range and don't spike or take off again.
The endo has dropped your T4 dose from 75 mcg to 50 mcg and reduced your AT drug and it's now a fine balance as to these medications balancing themselves out.
Your T3 has dropped a little and your T4 increased a little - with your TSH rising suggesting in very simply terms that you need more T4 - Levothyroxine - which may now happen naturally with the reduced dose of the AT medication.
What we can't factor in is by easing off the AT drug what proportion of your own thyroid hormone production has now been allowed to be released into your system, and yes, it might be a bit too soon to see or feel very different.
It might be prudent to check your ferritin, folate, B12 and vitamin D levels as these need to be maintained at optimal levels to enable you to build back up your core strength and assist in the conversion of the Levothyroxine into T3 - the active hormone that the body runs on.
I think I saw some on the April results but couldn't decipher them - can you type them in and or current levels of your vitamins and minerals if you have them?
YEs, also glad that antibodies are in range. I asked my new endo if he had any previous tests, but he didn't as i'd moved to this new town and the data from previous hospital is not shared (unless it is copied to GP which obviously didn't happen then).I only could find my own private tests done abroad in 2016:anty-TPO 2,10 IU/ml (range 0,00-5,61)
Anty-TG 1,21 IU/ml (range 0,00-4,11)
Yes, hope the first reductions of meds will balance eventually.
I shall take vitamins regularly from now. What exact daily dose for them, please?
sorry for a blurry picture, will try to change it.
Well, I think it very important to know which antibodies were over range and positive at diagnosis as this is the medical evidence of what you are dealing with.
I say this simply because there are two thyroid related AI diseases that start off in the same way with hyper type symptoms and the only way you can only tell whether you have Graves or Hashimoto's by which antibodies are positive and over range.
Hashimotos Disease expresses in transient hyper type symptoms swinging from periods of hyper to hypo as the thyroid gland becomes further destoyed with the patient becoming hypothyroid and requiring T4 thyroid hormone replacement as the gland becomes disabled.
Graves generally expresses as continual hperthyroidism and life threatening, it not medicated and treated with anti thyroid medication.
Graves Ophthalmology runs independant of Graves Disease.
TED, thyroid eye disease can also occur in people with Hashimoto's :
Just a thought as it's now been 6 years of these phases, coming and going hasn't it ?
The antibodies listed are all in range - so this is just ruling things out.
Maybe get checked for Hashimoto's antibodies, especially if your T3 and T4 levels take off again, so we can ascertain whether we looking at Graves or Hashimoto's ?
I see you've had a reply on the vitamin and minerals and just to add that I need my ferritin at around 100 for optimal T4 conversion and strong core strength and stamina.
No, hasn't been mentioned Hashimoto at all during those 6 years since 2015, only Grave's. And my TSH was never reaching 1, always around 0.30-0.50. Until GP lowered Levothyroxine from 100mg to 75mg at the beginning of this year, only then my first time TSH was up to 3.24. So, i can't say i had coming and going phases. ( if you mean having Grave's and Hashimoto's)).
Well, I've read of people on there having both Graves and Hashimoto's running at the same time :
That's why it's imperative to know which antibodies dominate and it all gets confused even further when Graves can present with both TR ab ( thyroid receptor blocking ) antibodies and or TSI ( thyroid stimulating ) antibodies so you have this tug of war within Graves itself.
Well no, if you are taking the AT drugs your thyroid hormones are blocked irrespective of the disease.
What you may find is that when " in remission " and off the AT drugs and not on any T4 medication that you start to experience symptoms of hypothyroidism and need to medicate T4 back in in order to function.
Either way, with Hashimoto's there is no medication until such time as your erratic own thyroid hormone production reduces further with you feeling even more hypothyroid and eventually needing T4 medication.
Graves can burn itself out, so here again, you'ld likely end up on T4 medication.
Just try and manage your symptoms as best you can and keep your thyroid.
Should your antibodies take off again, at least then, get the antibodies run for both Graves and Hashimoto's so you know exactly what you are actually dealing with.
Yes, I also heared some people have both - Grave's and Hashimoto, that's when its getting complicated for me.I will ask the doctor to keep me with the same dose ( 20 carbi and 50 levo) for a couple of months with blood tests and self monitoring how i feel (as we all know it is different with every day).
Since the reduction started, I haven't felt noticeably worse, which is great. I also been more outdoors and taking natural vit D from the sun )). I even started gradually get back to mild 30-45 min exercises.
Plus going to take regular vitamins, didn't understand their role before.
Good thing - I don't have gluten intolerance. So, I keep positive ))
Those tests were taken before I started to take more supplements and vitamins. I take Calcium plus vit D, Beta carotine, zinc, aloe vera, cod liver oil, optivision, evening primrose oil, copper, organic turmeric, Acidophilus, milk thistle. flaxseed oil.On the 15.04.21 i also was tested for Tissue transglutaminase Abs <1.9 (range 0-20), saying TTG negative ( with negative range <20 CU), so I don't have to worry about gluten, but I don't like bread anyway.
Hi healthylife, like you I am on long term BandR and want to be on the lowest effective dose. If my TSH ( normally very low during active Graves) had crept as high as yours and my antibodies were as low as yours I would be slowly adjusting my Carbimazole down from 20mg. Probably by 5mg. Increments regularly testing with a full thyroid panel to check if I was near remission. You are hypo at the moment so your levo needs adjusting up. I know that unless my fT3 is at least half way through range I feel awful and worryingly my eyes flare up again. I too have double vision but it is well controlled by a prism lens. Has noone suggested this for you? At the moment I am on 7.5mg. Carb and 75mcg. Levo and feel well.
Thank you asiatic!After a month being on lower dose i feel no difference, so i asked my new endocrinologist today to stay on the same dose (20 of carbi and 50 of levo) for at least another 4 weeks unless i feel worse or anything. He tried to suggest to go down to 10 mg of Carbimazole, but i said "let my body to process this change for a while before the next downgrade". So, he agreed to that and said that he will give me a phone call in 4-5 months (which i thought too long time, but I can always contact him or GP if anything). We agreed for my next blood text in a month time.
Meanwhile I ordered vitamins which were advised here and going to take them daily. Hope this will make a positive change.
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UPDATE New Endo/ Labs
Endo visit feeling more confused
Endo questioning my compliance
Preparing for Endo appointment, new blood tests with lower TSH
