I’m going to see a new endocrinologist in 3 days and need the help with questions I’m going to ask there.
I have a blood test results from the 5th of February with 3 highlighted abnormal results.
Se thyroid peroxidase Ab conc – 9 IU/ml (normal range is: 0-34)
Free T3 – 4.7 pmol/L (3.9-6.8)
Free T4 – 24.1 pmol/L (11-24) -highlighted as abnormal
TSH – 0.32 mIU/L (0.35-4.5) – highlighted as abnormal
Total white cell count – 3.9 10*9/L (4-10) – highlighter as abnormal
I’ve been on block and replace for Grave’s since 2015 with carbimazol 40mg and levothyroxine 100mg. After the blood test, the GP changed my levo down to 75mg.
I’m going to ask a new endo to gradually cut down my medication with regular blood tests.
The questions is how low should I try to start with?
I would really appreciate your help, especially those who already gone through the titration.
I’m going to post my question on Elaine Moor forum also.
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Thank you for such a prompt reply SlowDragon )).Don't get the same Levo, normally what is given at the pharmacy. Is it really possible to ask for a certain brand?
I'm taking Vit D, B group, calcium, zinc, selenium, C, A, but not regularly as sometimes i feel a bit sick after taking supplements.
Haven't had a coeliac blood test. Will do.
Not strictly gluten free but don't eat flour and breads often.
It's certainly possible to react differently to different brands - they are NOT all the same (the fillers are different). For example, a LOT of people don't get on with Teva - but others actively prefer it because it's lactose-free (with mannitol instead of lactose) - and others don't mind either way.
If you don't get on with a particular brand, it's a good idea to "yellow-card" it - and then it's certainly possible to have "not X" put on the prescription; or if you find you only get on with one brand, yes you can have "Y only" put on the prescription. But you must still check they haven't sneaked the wrong one into the bag every time before you leave the pharmacy, so it's best to allow plenty of time if you need to have or avoid a particular brand, so they can order it in if they try to give you the wrong one
Personally if you don't feel tip-top, I wouldn't worry about TSH being very slightly under-range and free T4 being very slightly over-range - I'd be worried about free T3 being a pretty feeble 27.5% through range. I'd want that to be at least double myself - so the GP having reduced your levo, will the endo give you a trial of lio?
Thank you fuchsia-pink I feel ok most of the days, with some slow (feeling a bit tired )days. My worry is about pretty high dose of both meds. I want to ask the new endo right questions and direct to the reduction of meds gradually.
Your GP has lowered your levo as your FT4 is slightly above range and your TSH Just below range. Lowering the levo will also likely lower the FT3 and you might start to feel hypo with that already quite low in range.
Might be good idea to check ferritin, folate, B12 & vitamin D which need to be good for thyroid hormones to work. In theory carbimazole doesn’t affect conversion only inhibits production of the thyroid making new hormones.
Have you had a TSI & Trab tested recently? Knowing the levels can be helpful as the lower these are the best chance you have at being able to stay in remission. Often they are not repeated beyond diagnosis & confirming you have Graves.
Hopefully the endocrinologist will know the best method to titrate both medication.
I’ve no experience of block & replace and how reduction should be approached.
I’m not sure I be happy to cease completely & see how it goes. As some endocrinologist suggest when on a moderate dose of carbimazole. I would aim for small increments of the medication. ie tiny reduction of carbimazole and or levo retest and adjust to balance. Or you may have more control if you do 1 medication alternating after each test. You do need to give it time on each adjustment, usually 6 weekly is a standard scale.
Thank you PurpleNailsI will ask for all those vitamins tested.
I have only had tested Se thyroid peroxidase Ab conc – 9 IU/ml (normal range is: 0-34) in my surgery, will ask for TSI & Trab when at the hospital on thursday.
Yes, hopefully the endocrinologist will know as i definitely won't agree with completely going off all meds at once.
Small reduction every 6 weeks sound as a good idea, thank you!
Have you ever had TRaB of TSI tested in the past? and have you TPO always been negative in previous tests. Also, did you out start on block on replace. Usually it’s selected if carbimazole on it own doesn’t help control levels and you experience unexpected fluctuations.
From what i can see ive been tested Vit B12 in 2017 - normal level. Vit D level -in 2017 also normal. Serum folate in 2017 and 2020 - normal. Also bone profile test in 2020 with all normal results.Havent seen TRaB of TSI tested, tried to ask in February for that when i had my blood test, the nurse in local surgery couldn't understand what i was asking for, she said that Se thyroid peroxidase Ab conc is the one i need ((.
The first endo doctor put me on carbimasol 20 mg and then increased up to 30 in 2015 when i was diagnosed with grave's. Then after seeing couple of different endocrinologist (as they were not permanently at that hospital for some reason) the next endo suggested block and replace which started the same 2015.
I found a printed copy I asked that time while my hospital appointment, it said by doctor - " I think it is important we change her over to block and replace regimen for 12 months to ensure better reduction in risk of relapse."
Vit B12 in 2017 - normal level. Vit D level -in 2017 also normal. Serum folate in 2017 and 2020 - normal. Also bone profile test in 2020 with all normal results.Havent seen TRaB of TSI tested,
Please add these actual vitamin results
Obviously they all need testing annually
That’s madness that you haven’t had TSI or Trab antibodies tested to definitely confirm Graves’ disease
Early stage Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid.
Recommend you get FULL thyroid and vitamin testing done ASAP
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto’s
Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, with both Graves and Hashimoto’s
Ask GP/endo to test vitamin levels and TSI or Trab antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 thyroid antibodies or all relevant vitamins
That's a great info, thank you!I will ask for the tests you mentioned when at the hospital on thursday.
Vitamin results:
Serum ferritin 58ug/L ( normal range 13-150) in december 2020
Serum vit B12 554 ng/L (180-2000) dec 2020
serum total 25-OH vit D level - 88 nmol/L (normal range not known ) 2017
vit B12 448ng/L (187-883 ng/L) in 2017
serum folate 7.97 ug/L (3.1-18.3 ) in dec 2020
serum folate 12.8 ug/L (3.1-20 ug/L in sept 2017
absolutely agree That’s madness that you haven’t had TSI or Trab antibodies tested to definitely confirm Graves’ disease. I will specifically ask the new endo to look back into my data and check if i've even been tested, but i doubt.
I am taking vitD, calcium, selenium (brazil nuts ), vit B.But have to admit, haven't had any for about 2-3 weeks, as my stomach wasn't that happy. Going to get a blood tests first and then come back to vits . So, those results more or less "natural"
TPO is short for Thyroid Peroxidase antibodies. Elevated levels are indicative of Hasimotos autoimmune thyroid condition and can also be found in Graves disease which is why you need TSI and TRAB tests to exclude or confirm Graves.
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Well, I see you now sitting on the centre axis of a seesaw with your AT drugs one end blocking your natural production and T4 medication the other end attempting to replace your thyroid hormones, and see a nudge down on medication one or both ends to compensate, might be an option.
It's a fine balance to get both these ends balanced as they both directly influence your results, but more importantly you, and your well being, mentally, emotional, psychologically and physically.
Core strength vitamins and minerals, ferritin, folate, B12 and vitamin D need to be maintained at optimal levels as there is a risk your metabolism isn't working well and no matter how well you may eat your body may not be able to extract the essential nutrients from your food to maintain and support thyroid function.
Your TSH will be where ever it is - you are with Graves Disease and taking AT drugs and T4 :
Your T4 is barely over range :
My total white cell count was at 4 before I started AT drugs and this was used to pressure me into the RAI which I was told I was destined for at my very first hospital appointment.
The lower your T4 however the lower your T3 and it is T3 that gives you the symptoms - too high a level and you may feel " hyper " and too low level and you will feel " hypo " :
Less AT drug would allow your own thyroid hormone production to increase without relying too heavily on the T4 medication : maybe the doses need adjusting a little at both ends ?
We know the RAI is off the table as you have eye issues :
There maybe a suggestion of a thyroidectomy to move you through the system, and may just depend on the hospitals guidelines to treatment for Graves Disease.
We do need to know where your Graves antibody levels are now compared to previously as if these are still high and active there seems little point in suggesting anything other than playing for time.
P.S. Ling posted a very interesting article yesterday - it might be worth taking a look and thnk I've linked you into this post - but not very computer savvy so apologies if you haven't been notified of Ling's post.
thank you, I agree with lots you suggesting. As i said answering previously, I will have to get all blood tests done, especially those which never been done.
And for sure reducing the dose both ends would be the way forward for me.
I will check Ling's post, thank you.
I received reply from Elaine this morning, she suggested to reduce half both meds. As she was saying - " On lower doses of meds it’ll be easier to gauge remission."
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.
Can I suggest you start a new post with these results as it's not going to be seen easily in this post which is 2 months old.
Forum members will look back at the old post for reference but you really do need to start a " fresh " question with these fresh blood test results for the maximum number of forum members to view and respond accordingly.
P.S. I can't see the details on the April blood tests, even if I zoom or enlarge, maybe type them in - or maybe it's just me - probably !!
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