Hello I joined here as I have all the symptoms of a thyroid/pituitary problem and feel like it is being ignored by the endocrinologist I was sent to on the NHS.
My latest blood tests are;
TSH 1.06 (0.27-4.2mIU/L)
FT4 14.5 (12-22pmol/L)
Total T3 0.9 (1.3-3.1 nmol/l).
My igf-1 was also low at 9 (10-38)
As was ACTH 6.6 (7.2-63).
Any help to find out what is going on would be greatly appreciated.
Welcome to the forum
What has endocrinologist said about low ACTH results
Approx how old are you ….pre, peri or post menopause
What are your primary symptoms
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Are you in Scotland - seeing total T3 was tested
Ft3 is the better test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Thanks so much for your fast reply. Yes based in Scotland, and those tests results were actually from a private endocrinologist that I had asked to investigate T3/T4 and growth hormone.
He was absolutely useless and couldn't even remember why I was there. He thought i wanted to get pregnant, rather than well. The blood tests should have been done at 9am, but as he hadn't put them in, they only got done at 11.30am.
He completely ignored the ACTH results, and said all my thyroid and GH results were normal and nothing to be concerned about.
I am in my mid 30s. When I went off the pill a few years ago my periods didn't start again, however has been checked and not in menopause and still have over 50% of eggs remaining.
However my LH, FSH and oestradiol are all very low.
I am constantly tired, confused all the time and can't think straight. When I wake in the morning I have good energy, but completely crash as the day goes on. I have had a large amount of unexplained weight gain around my abdomen and upper thighs in the last 2 yrs, with no change in diet. High cholesterol which was perfect until 2yrs ago, loss of bone density. I bruise easily and when I get cut it takes a long time to stop. Have had extra bone growth in my jaw, fingers and feet. Find it very hard to swallow, and I'm constantly thirsty and drinking large amounts of water every day.
Have booked an appointment with a private endocrinologist in London now, so thank you so much as I will now know what to ask for.
Out of all the minerals you mentioned, all are within range with the exception of ferritin which over the last 2yrs have been 5 followed by 7 (15-200ug/l).
Please add actual vitamin results for B12, folate and vitamin D
Your ferritin is absolutely dire
Extremely deficient
And is obviously the first thing that must be sorted out
Thyroid can not make thyroid hormones if vitamins are too low…..especially low iron and ferritin
What’s your diet like
Are you vegetarian or vegan
First step is to get full iron panel test for anaemia
Coeliac blood test too
Also prolactin test as possible explanation of no periods
24 hour urine collection for cortisol
5 point cortisol and DHEA test via Regenerus for abnormal cortisol result
regeneruslabs.com/products/...
cdn.shopify.com/s/files/1/0...
Have you had ultrasound scan of thyroid
Will pm you re adrenal, thyroid and pituitary specialist
Ferritin
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Good explanations of iron
theironclinic.com/iron-defi...
theironclinic.com/ironc/wp/...
Why low ferritin needs improving
Had anyone tested your growth hormones or done MRI of pituitary
“I have had a large amount of unexplained weight gain around my abdomen and upper thighs in the last 2 yrs, with no change in diet. High cholesterol which was perfect until 2yrs ago, loss of bone density. I bruise easily and when I get cut it takes a long time to stop. Have had extra bone growth in my jaw, fingers and feet. “
Thanks again. I will definitely read through all the articles and hopefully get somewhere with them.
My prolactin was 136 (102-496)B12 825 (180-2000)
Folate 10.1 (2.8-20)
Vitamin D 55 (50-139)
I have Coeliac so avoid all gluten and grains.
I have other long standing gastric/bowel problems so have to be on a restricted diet. Mainly chicken and turkey, with olive oil/coconut oil and some veg usually courgettes and Pak choi.
Just had an MRI of the pituitary done and all appeared clear. No scan of thyroid.
My blood tests for iron etc are
Will tag SeasideSusie and humanbean re iron test results
As you’re diagnosed as Coeliac (autoimmune) this makes autoimmune thyroid disease much more likely
ESSENTIAL to test BOTH TPO and TG thyroid antibodies
Plus ultrasound scan of thyroid
20% of Hashimoto’s patients never have high thyroid antibodies…….and on gluten free diet it’s more likely TPO antibodies won’t be high
healthunlocked.com/thyroidu...
Paul Robson on atrophied thyroid - especially if no TPO antibodies
paulrobinsonthyroid.com/cou...
Suggest you book ultrasound to get done in London too
Suspect it’s the low thyroid hormone levels causing low ferritin
Low ferritin despite gluten free diet
theceliacscene.com/low-ferr...However, there are some other possibilities that need to be mentioned. One is that hypothyroidism can cause a low ferritin level in absence of iron deficiency, and you should be sure your thyroid level is right in the middle of normal.
Hi SlowDragon
I have just seen the doctor today and almost all of my results they said were normal.
However the tests were done at 4pm. I still feel terrible, with every symptom pointing to my pituitary/thyroid so was hoping you could look at these results for any advice.
I'm guessing the 1st thing you would say is to get them redone before 9am, so have already requested this and getting the thyroid bloods redone tomorrow.
They were happy to do this, but said it was unlikely to make any difference due to the face I wasn't on any thyroid meds, saying this is were the problems usually show up being time sensitive.
Hoping for any advice, as now feel like I have hit a dead end and am completely lost.
On a side note my ferritin levels have definitely risen from last yr from 5 and 7, to 33ng/ml in these bloods (5-204). I know this is not high enough, but definitely better than my last bloods.
Thanks
Optimal vitamin levels are
Ferritin at least half way through range ….. obviously still got a way to go to get to this level
Vitamin D at least around 80nmol
Are you currently taking any vitamin supplements that explain high B12?
High B12 can be deceiving
Paradoxical B12 deficiency
b12oils.com/paradoxical.htm...
NHS very unlikely to test thyroglobulin antibodies as TPO antibodies were negative
You will probably need to test privately
Similarly get ultrasound scan of thyroid
Have you got list of recommended thyroid specialist endocrinologist from Thyroid U.K. yet?
Will pm you re adrenal, pituitary and thyroid endocrinologist
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