This is a follow on from some previous posts, I’ve started a new post in the hope it’s seen.
A little update: so I went to my Private Endo app last night and the Dr was very good. Agreed that there’s a high chance that something is wrong in my Endo system, but didn’t jump on the thyroid. He seemed to be pointing much more at investigating my pituitary gland and wants me to have the following blood tests. He says I could go to my GP and “ask” with his recommendation that they check me for all, but he says it’s unlikely they will.
1) TFT
2) FSH
3) LH
4) Testosterone
5) Prolactin
6) Thyroid ABS
He said that those 6 are possibly available on the NHS, but it’s not guaranteed and I will def be waiting.
7) Short Synacthen Test - he said this one is def not available on the nhs and would have to be done privately. I’ve googled and seems pretty costly.
I’m considering finding somewhere online who can test the first 6 in one go as they are all fairly common. Any recommendations to keep the costs down would be appreciated.
Any advice on the 7th expensive test would be appreciated too.
I’m going to call Nuffield health on Monday on the Dr’s advice to see how much the first 6 will cost to have done there. Are they open to doing discounts on multiple blood tests like that, given that they will probably only take one blood sample?
Also, does anyone have any experience on what he may be suspecting for the first 6 tests? From what I can gather - he’s looking more at my Adrenals?
Thanks
John
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john_83
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The NHS will do what they call a 'TFT', but their idea of a 'TFT' is just a TSH test. They rarely do FT4 and almost never FT3. So, although it's supposed to check thyroid function, it actually doesn't, and wouldn't pick up on Central Hypo.
He actually seems to be covering all bases: thyroid, adrenals, pituitary/hypothalamus. Which is good IF you can get them all done.
I thought the NHS did do the short synacthen test, because you read of lots of people having it on here. But, I don't know because I don't live in the UK. It doesn't hurt to ask!
Yes they do do an SST but it has to be done through an Endo. You need to make sure that an ACTH test is done just before they start the test, its simply a blood test but needs to be done first. Some Endos dont have a clue about pituitary problems so try and find one who has been recommended. Good luck.
I have had a short Synacthen test and it was on the NHS so I would check yourself to see if it is available . My Endocrinologist sent me for one and I also had to collect my urine in a big plastic bottle to check my cortisol levels this was also done by the NHS.
I do all the above regularly with online provider of fingerprick blood tests, NHS grumble moan and resist doing these vital tests. Men in particular need to know whether any level of hypothyroidism (notwithstanding whether TFT results are in any lab range) is affecting other pituitary function such as prolactin regulation. Thyroid hormone replacement is known to increase SHGB which can catastrophically affect free testosterone levels and total testosterone testing is less than half the picture despite NHS doctors insisting that is the only relevant indicator. In some cases thyroid replacement can cause iatrogenic testosterone deficiency and the symptoms of this can be similar to and as bad and therefore confounding as of hypothyroid symptoms. Short synacthen test is also poo poo’ed by nhs clinics which rely on the cheaper static waking cortisol blood tests, The SST is expensive privately and an alternative, at least in the first instance, is a series of salivary cortisol tests, also relatively inexpensive online but also sneered a,t by my endocrinologist at least.....
In my experience many of our issues are almost entirely caused by dysfunctional thyroid metabolism and replacement therapies that are not optimised for our unique physiological set points, which are disrupted by inadequate treatment and residual Inter-tissue hypothyroid imbalances that may not show on a simple TFT.
The NHS paradigm / attitude to hypothyroidism and replacement therapies is woefully simplistic and not fit for purpose for many of us.
Oh and BTW if your free testosterone is low and SHBG is high you can try boron supplements to reduce SHBG and thus increase free testosterone. Raised prolactin, if not caused by a pituitary tumour (less likely) is caused by raised or unstable TSH levels from the body’s attempts to regulate thyroid hormones, there is some woo woo online about the herb sage being suppressive of prolactin but it may be that consistently keeping TSH between 0.5 and 1.5 could gradually reduce prolactin levels. High prolactin is also associated with testosterone balance and a potential cause of migraine type headaches.
Wow, thanks for such a detailed response. I’m going to look into these tests privately with Nuffield health and also medichecks.
Those tests can be done on the NHS, they also need to do an ACTH (another pituitary hormone which stimulates the adrenal glands to produce cortisol) Your GP can do an early morning blood cortisol to see what your levels are & if theya re low then you can be referred to an Endo who specialises in pituitary/adrenal issues. The Pituitary foundation will have a list of those Endo's if you contact them.
Unfortunately lots of places do the SST test without including an ACTH test (or if it is done it doesn't get put on ice and rushed to the lab as it should be). Doing this means that it is impossible to diagnose secondary adrenal insufficiency (and possibly tertiary as well?).
I have had two short synacthen tests on the NHS. This is the protocol used for the test recognised by the Society for Endocrinology pathology.leedsth.nhs.uk/dn....
Note it says if you have a cortisol problem caused by the pituitary rather than the adrenals, the synacthen test is not reliable. It is the first line test though so if not conclusive you need second line testing. Your GP would be best referring you to an endocrinologist as you will see it’s not a straightforward case of taking blood.
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