After feeling unwell for a number of years I finally went private for full screening and diagnosis as GP would only test TSH even though I had classic hypothyroid symptoms. Other health conditions- I have mild kidney failure, hypertension and slightly elevated haematocrit.
I initially went to medichecks and had a basic thyroid test in April of last year
TSH 1.65mU/L (0.27-4.2)
Free T3 4.15 pmol/L ( 3.1-6.8)
Free T4 13.1pmol/L (12-22)
I went back to the GP and they dismissed my concerns that free T4 was low but agreed to complete another test. Despite assuring me a full screen would be done only TSH completed 0.936miu/L (0.35-4.94)
At the time I was struggling with severe labile hypertension which the GP was unable to rectify with medication.
I have a strong family history of thyroid disease and decided to seek help from a private endo. I found a brilliant endo via thyroid U.K. list and visited them in June 2022.
my test results were:-
TSH 1.94 min/L (0.27-4.2)
Free T3 4.8 pmol/L (3.1-6.8)
Free T 4 12 pmol (12-22)
Thyroglobulin antibodies 24.8 iu/mL (0-115)
Thyroid Peroxidase <9iu/mL (0-34)
Vit D 36nmol (50-100)
B12 82pmol/L (25.1-165)
Red cell folate 728nmol (340-1474.7)
Ferritin 10 ug/L (10-204)
My endo diagnosed suspected secondary hypothyroidism and stated me on 50mcg levothyroxine. Six weeks later he increased it to 75.
I was reviewed in September 2022
TSH 0.03mu/L (0.27-4.2)
Free T3 5.2pmol/L (3.1-6.8)
Free T4 19.9pmol/L (12-22)
I was feeling great my blood pressure had stabilised and I no longer need to take daily hypertension meds only one tablet once a week!
My endo tweaked the Levo to 75 mon-fri and 50 sat/sun.
Latest tests show -
TSH 0.04mu/L (0.27-4.2)
FreeT3 4.77pmol/L (3.1-6.8)
Free T4 19.6 pmol/L (12-22)
CRP HS 0.73mg/L (0-5)
Ferritin 46.7ug/L (13-150)
Vit D 70nmol/L (50-200)
Vit B12 127pmol/L (37.5-150)
Folate 3.34 >3.89ug/L
Antibodies fine.
During the time I have seen the endo he has written to my GP on numerous occasions asking him to continue prescribing my levothyroxine but my gp has refused. My endo has said I definitely have secondary hypothyroidism but my GP says no I don’t and that I am being over medicated placing me at risk of AF and Osteoporosis. My blood pressure has continued to improve and I now only have to take medication once every ten days.
My GP did refer me to the local endocrinologist who refused to accept referral as thyroid normal- he specialises in diabetes. I was also referred to a pituitary endo in a hospital in the next county who again refused to see me saying my surprised TSH shows I don’t have a pituitary disorder. This and getting all the gp’s onside in the surgery has entrenched my GP’s position.
I have just had Basal pituitary tests complete via GP although NHS lab refused to do LH or IgF1 . FSH, prolactin, am cortisol all in normal range.
FSH 86iu/L (26.7-133.4)
Prolactin 219 min (109.557)
9am Cortisol 496
Ferritin 36.7 (10-204)
GP now saying he was right all along and endo is an ‘outlier’ and out of step with normal clinical practice. This completely ignores how much better I feel with my symptoms reduced dramatically. He is advising me to instantly cease all thyroid medication and offering to treat my individual symptoms. I reminded him he tried that for two years without success.
Please could you advise on next steps:-
Do the pituitary tests rule out secondary hypothyroidism?
How do I get my GP to accept private endo recommendations ?
Is there a campaign group I can join to lobby NIcE to change current guidelines on Secondary/Central hypothyroidism ?
Look forward to hearing from you this is such a helpful/ informative site 😊
Thyroidectomy or not? Thyroidmegaly and multi modular goiter. 
Teva, Teva, every where, Nor any tab of Venc
Just needing a bit of tlc :)
