Hi please help my T4 is 1.72, TSH 0.29 following total thyroidectomy(1 year) eltroxine reduced following results??

[paulam]

I have enlarged left hands, feet , ear lobe and left side of nose in last six weeks. RIght side is catching up but still marked difference.(1cm in feet,0.3cm in hands)These are recorded. blurred vision and dizzy spells. MRI of brain shows pituitary normal GR-F1 normal and growth hormone normal .CEA 10.5 all other bloods normal.Endocrinologist confused and says its not in his window of knowledge. He Says CEA is not important??reason for thyroidectomy -multiple benign nodules both lobes that were increasing monthly. I have also had large fibroids in the uterus and been admitted with diverticulitis twice in the last year colonoscopy showed thickening of of sigmoid and descending colon with diverticuli on both. Up to 18 months ago I was perfectly healthy now beginning to feel like a hypochondriac . Any insight would be greatly appreciated.

[shaws Administrator]

I am sorry you are having all these problems after your thyroidectomy last year. When you say your hands/feet etc are enlarged, I wonder if this is due to 'swelling' in your tissues? Plus dizzyness etc.

web.archive.org/web/2010103...

I think it would be kinder if your Endocrinologist prescribed some Natural Dessicated Thyroid Hormone, on a trial basis, to see if that would help. With the removal of your thyroid gland, you no longer get the hormones your own thyroid gland produced and although the Endocrinology endorses levothyroxine only you may need all of the hormones, T4, T3, T2, T1 and calcitonin. Mother Nature must have reasons for providing such hormones.

It's all very well removing your thyroid gland and then when the patient complaints, who is then told the doctor is confused because patient, rightly so,complains that their health appears worse than before the op.

You are entitled to the best possible thyroid hormone replacement if it makes you much better. You should also have enough medication to have a low or suppressed TSH, not kept 'within a range' 1.74 is too high. Dr Toft of the British Thyroid Association recommends:

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l. .

and also says some of us need a suppressed TSH to feel better.

Regards

[paulam in reply to shaws]

no not swollen left foot grown in length by 11/2 cm hand by 1 cm ear lobe markably longer and wider than other

[paulam in reply to shaws]

also it is not my fingers but the palm of my hands that have most growth and and my feet rather than my toes forgot to mention also that i have constant tingling in my feet and hands worse when resting

[paulam]

thanks for reply.no checked for diabetes and vitamin and folate fine

[shaws Administrator]

I googled and this is the link which came up:

mayoclinic.org/diseases-con...

You need further investigations.

[Mabes]

Ask your endo for your IGF-1 to be tested. This is high in people with acromegaly. The endo could also do an oral glucose tolerance test, but instead of testing your glucose levels they check your growth hormone to see of it suppresses (which it should do in healthy people). A random grown hormone blood test is not overly helpful as it fluctuates throughout the day.

The thing with acromegaly is that growth is normally bilateral.

Another cause of adult 'growth' is pseudo-acromegaly which is linked to insulin resistance. You can be tested for this also.

I had pronounced growth aged 27-30, my skull and nose enlarged, hands and feet grew and changed shape, and I actually grew 2 inches taller! I was very ill during this time. I really had to push to get proper testing as the diabetes doctor I was referred to at the hospital was very unhelpful (he was equally unhelpful about my thyroid problems). It turns out the main hospital by me does not have a true endocrinology department - just this emergency medicine doctor with an interest in diabetes (who then gets to see all endocrinology cases). If you get nowhere, ask your GP to refer you for a second opinion. A teaching hospital with an endocrinology section is your best bet as they will be used to performing the appropriate tests.

They never did figure mine out. By the time I got to see true specialists over 2 years later (and 4 years after I first had symptoms), my growth hormone level and IGF-1 had normalised.

I hope this is helpful.

Mabes