Hi, I'm new here, and a little unsure if I'm in the right place but here's my question:
TSH 2.29 ( 0. 35- 4.94).
Free t4 11 .2 (9-19)
Any ideas? GP said it's fine and nothing to do with thyroid but I've just asked for pituitary hormone tests as my brother had a 2"diameter tumor removed which destroyed his pituitary, and my uncle died of a brain tumor.
If he refuses, any advice on private hormone testing would be appreciated.
Loads of symptoms, I'm very complicated!
Many thanks
Hi Thenightowl, welcome to the forum.
Well, your FT4 is only 22% through the range, which is low, so one would expact the TSH to be somewhat higher than that. It's just a pity they didn't test your FT3, because that would have given another clue. But, I think you could be on the right track about a pituitary problem.
GPs get very little training in thyroid, so I doubt if your GP would even have heard of Seconday Hypo, and wouldn't understand how to make the connection. You really would need to see an endo to get further testing. But, check out your endo before going to see them, because a lot of endos won't have heard of Secondary Hypo, either.
If you email Dionne, at:
tukadmin@thyroiduk.org
she will send you a list of endos recommended by members of this forum. So, there might be someone on there who knows about Secondary Hypo - or perhaps someone reading these posts might know one and can PM you his/her name.
But, for details of private testing, see here:
thyroiduk.org/getting-a-dia...
Thank you so much for your reply, and that's very interesting.
He's just said that my TSH is only slightly low and as ft4 is not high I can't have an issue with thyroid.
I have so many issues, several rarely diagnosed, and usually have to self diagnose, present my GP with symptoms and info, and then things are eventually confirmed -but I knew very little about this until yesterday. I'm sure my GP despairs about me going down yet another rabbit hole....
I will email Dionne now.
Best wishes
He's just said that my TSH is only slightly low and as ft4 is not high I can't have an issue with thyroid.
But, your TSH is too high to be euthyroid, yet not high enough to be hypo. And, your FT4 is too low to be euthyroid - a euthyroid FT4 would be about 50% through the range. So, he doesn't really know what he's talking about, does he.
Glad you do! This is all very new to me. I've emailed Dionne so I'll see what comes back. My poor GP, I keep getting rare things ...
Well, they think Secondary hypo is rare, but that's because they never test for it. If you never test for something, of course it's rare! But, it really isn't as rare as they think!
Do you mind if I explain a bit how it works?
TSH is a pituitary hormone. When the pituitary senses that there's not enough thyroid hormone in the blood, it increases its output of TSH - Thyroid Stimulating Hormone - to stimulate the thyroid to make more T4 and T3 (the thyroid hormones).
So, the less thyroid hormone in the blood, the higher the TSH.
The more thyroid hormone in the blood, the less TSH is produced.
A euthyroid TSH is around 1 - never over 2 - and when it gets to 3 you're hypo.
A euthyroid FT4 is around mid-range.
Your FT4 is below euthyroid, even though it's still in-range (the ranges are too wide), so the TSH should rise to stimulate the thyroid to make more. But, it hasn't risen enough, so the FT4 will just continue to drop because the thyroid isn't getting the right amount of stimulation.
So, technically, there's nothing wrong with your actual thyroid. It's the pituitary that isn't functioning correctly. And, this seems to be something doctors have trouble getting their heads round.
Just testing TSH and Ft4 is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels, thyroid antibodies and also prolactin
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 .
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
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Come back with new post once you get results
Hi!
So- I'm at last on daily b12 cyanocobalamin injections for my b12 deficiency first diagnosed 32 years ago(MS diagnosed), folate is at last good. I've just raised my chronic low ferritin, all other iron tests are good. Vid d good, and I also take it daily with k2.
I've hypochloridria, which causes malabsorption, despite excellent diet. Not celiac.
MCV was 104 three months ago... Now 100. Low white blood cell count.
I'll arrange all that one way or the other. If I'm looking at secondary hypothyroidism caused by a tumor, do you know if all of your recommended tests cover that possibility?
Thank you so much for your advice, really appreciated.
First get FULL Thyroid and vitamin testing
Come back with new post once you get results
Email Dionne at Thyroid UK for list of recommended thyroid specialist endocrinologists. Ideally looking for one that’s also adrenal and pituitary specialist
tukadmin@thyroiduk.org
Roughly where in the UK are you?
Have you had pituitary function blood test (very expensive- was £200 almost 30 years ago W hen I had one)
Or MRI scan of pituitary?
Or prolactin test?
Hi, I'll do that and I've emailed Dionne too.
I'm in Dorset.
No I've not had any other thyroid testing, just the TSH and ft4 which I asked the nurse for last week due to my symptoms.
3 x MRIs many years ago, but not looking specifically at pituitary. I've multiple deep white matter lesions in the corpus callosum with an MS diagnosis so all my issues get blamed on that.
Just asked GP to test hormones related to pituitary and waiting for his response, fingers crossed.
Thousands of members on here forced to get full thyroid and vitamin testing privately to make progress
Come back with new post once you get full results
Thank you, I learn so much more from helpful forums like this and often go private for tests, it's a shame that we need to but thank goodness for the internet!
Just realised the biotin issue, I was on 50mcg in my multivit, taken most days, so maybe that's skewed my results....
Oh and there's biotin in my hair loss shampoo, used on morning of test....
Just heard from GP, suggested retest in 6 weeks so I'll come off it a week before and see what happens.
Suggest you get vitamin D, folate, ferritin tested now
What vitamin supplements are you currently taking?
Just had various tests. Folate over 20, b12 over 2000, ferritin 35 (going up, used to be 10 ..) Aiming for 100. I take ferrous fumerate 210mg every second day with l-ascorbic acid powder for chronic 'low ferritin without anaemia'.
D always optimal, and I take up to 30000iu d3 a day and k2 ( sublingual). Daily cyanocobalamin b12 injections, (I'm on the 'b12 wake up' Facebook group, and a low ferritin one) 5mg folate, magnesium, multivit with nothing more than 100% RDA in. bromelain sometimes.
HCl betain with pepsin for 11 years with every meal for hypochlorhydria
Just about to restart FAR infrared therapy after a break for many years. Mostly organic paleo, gluten/dairy free.
Quercetin when needed, daily hydrogen water for MCAS.
I've the gene linked 'trifecta' of a condition very similar to Classical EDS, autonomic dysfunction and mast cell activation syndrome (MCAS). Also MS (which is probably b12 deficiency), interstitial cystitis, and a weird undiagnosed inflammatory issue.
Update: so it looks like this might be rare central/secondary hypothyroidism which is what my brother has.
After initially dismissing that I had any issue, I sent some of the info from you fabulous people on this post to my GP, and he eventually agreed to more testing in a couple of weeks.
In a strange twist, my NHS pain management lady works for the pituitary foundation and she's also been really helpful.
Thanks!
Times for testing...
Rambling NDT question... :)
Where are the missing million??
Has anyone had a pituitary gland tumour?
