Hi everyone, I am looking to anybody who may be able to offer some guidance and support on the below issues.
I was diagnosed by endocrinologist in late 2021 with low vitamin D and prolactinoma due to my menstral cycle stopping. At diagnosis my thyroid results were:
FT4 13.7 pmol/L, (9-22)
FT3 4.65 pmol/L ( 2.63 - 5.70)
TSH - 3.25 uIU/mL (0.35 - 4.94)
Since diagnosis I have really struggled with medication side effects from the prolactinoma treatment (cabergoline initially but also tried bromocriptin ) and returned to GP as I was feeling so tired, lethargic, low in mood all the time. After further blood tests, GP suggested thyroid is under active and insufficient in vitamin D. They prescribed levothyroxine and suggested taking a daily vitamin D supplement and discuss results with endocrinologist. On taking a starting dose of Levothyroxine I have developed the worst chest pain and acid reflux so stopped taking medication and awaited review with endocrinologist
My blood levels in August:
TSH 6.7 mIU/L. (0.30 - 4.80mIU/L)
T4 - 10 pmol/L (7.70 -20.60pmol/L)
Serum B12 - 209 ng/L (145.00 - 914.00 ng/L)
Serum folate 4.09 ug/L (3.00 - 20.00ug/L)
Serum iron 14.1 mol/L. (11.00 - 32.00umol/L)
I have been reviewed by endocrinologist who was rather dismissive and said symptoms are not thyroid related and to start taking vitamin D at 2k-4k dosage. I feel like I am going round in circles with no support and no relief in symptoms. Endocrinologist has re-tested T4 and T3 and awaiting results.
Can anybody suggest what is happening with these blood test results ? do they suggest a thyroid issue ? could the prolactinoma be thyroid related or are these two separate issues ? Do my bloods suggest I have good thyroid function ?
Lastly does anybody else get chest pain/acid reflux for medication - I have similar symptoms from both medications which makes me think its stomach related not my heart. Endocrinologist just said I am intolerant to medication.
Any advice is welcome 😀
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Wilburlily
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Thankyou for the quick response Slowdragon, I will email for the list and organise to get other blood tests done.
The GP started me 25mg Levothyroxine due to adverse event with other medications and I felt a lot better in myself but the acid reflux and chest pain meant I didn't continue and endocrinologist has said not to take at all as I don't need it and to repeat the bloods.
The only supplest I am on is Vitamin D once a day (1000iu), endocrinologist has suggest I need to increase to 2000 - 4000. Latest vitamin D test was 57 nmol/L range (75-150nmol/L)
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
If still have hypothyroid symptoms with TSH under 2 ….Aiming for TSH at least around or below 1 …often lower
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Agree with all of the comments above. For me it has been an eye opener looking at my vitamin and iron levels as well as the thyroid and other blood tests. I had a suspected prolactinoma (later found to be a non - hormone producing tumour) and I was diagnosed with hypothyroidism at around the same time. I asked for the antibody test as it was not clear to me if the tumour was causing the thyroid issue or not. It’s possible there is both a thyroid and pituitary issue at the same time which is frustrating when GP only uses TSH in my results… I would ask for T3 tests for this reason too.
If you want to chat happy to message. I was diagnosed with tumour last year and had surgery in January . I have Hashimotos and still working through that diagnosis.
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