Hi everyone, I haven't been here for a while! - Thyroid UK

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Hi everyone, I haven't been here for a while!

saltylu
saltylu

I've got about a year or so history of blood tests showing my thyroid levels not being quite right; I have been discharged by the endocrinology department and my GP has said she is unable to get me medication as it goes against NHS guidelines.

My latest blood tests were:

TSH 1.18 (range 0.27 - 4.2)

T4 10.1 (range 12 - 22)

T3 4.2 (range 3.1 - 6.8)

I had my thyroid antibodies tested a year ago via medichecks and that came back clear, would it be worth getting this tested again?

I have had to pay to go private to get this treated and I am just waiting for a report to come back advising me on what prescription I will need, but it looks like I will be prescribed NDT.

Since last posting (which was at least 6 months ago) I have been diagnosed with ME/CFS and POTS, I'm undergoing tests for MS (strong family history and neurological symptoms) and got a positive ANA blood result a week ago.

Is there anything else I could be doing/should be getting tested? I'm having a spine mri at some point in the future to see if I have any lesions there but other than that I don't think I have anything else planned test wise.

14 Replies
oldestnewest

Given your very low FT4 and your low TSH, I think you ought to be investigated for Central Hypo. Has no-one ever mentioned that?

Central hypo is when there is a problem with the pituitary (Secondary Hypo) or the hypothalamus (Tertiary Hypo), rather than the thyroid itself ('Primary Hypo). It's supposed to be rare, so no-one ever tests for it. So, your GP has probably never even heard of it. But, you'd think and endo would notice something odd!

The treatment is the same as for any other form of hypothyroidism, but the thing is, the pituitary makes a lot of other hormones, apart from TSH, and they too could be low. So, they should be tested, too. It could affect your adrenals, and various other areas. So, it's not just a question of treating the hypo, and does need further investigation.

saltylu
saltylu in reply to greygoose

Hi Goose,

Yeah I mentioned it to the Endocrinology team and my GP but they have said that because my FT4 is always low (and just in range for the NHS tests) that it's just a me thing. I had my adrenals tested and they were normal, I've also had a lot of other hormones tested as well (anterior pituitary) and they came back normal. The only thing is my last cycle for my period was 50 days, so I am unsure if that was a one off or a sign of something not right again. It was an endless back and forth to several different GPs and then a letter from endocrinology saying there is a multi-system issue going on but it's nothing to do with my hormones.

greygoose
greygoose in reply to saltylu

a multi-system issue going on but it's nothing to do with my hormones.

Everything is to do with your hormones! Well, an awful lot of things, anyway.

Myself, I would not accept that the low FT4 was a 'me think'. That doesn't make sense. If your pituitary is working correctly, then it should pick up on that low FT4 and increase the TSH.

But, if your other hormones are fine, then that's good. And, it could be a hypothalamus problem rather than the pituitary. It's the hypothalamus that tells the pituitary to make TSH. But, they rarely investigate the hypothalamus. And, you're getting thyroid hormone replacement, anyway. So, that's good. :)

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saltylu
saltylu in reply to greygoose

I spent months seeing different GPs and they all said the same thing, one of them even said they would medicate me but they can't because of the guidelines they have to follow.

greygoose
greygoose in reply to saltylu

Guidelines! Pft! Whatever happened to common sense?

Actually, they don't have to follow them. They are allowed to use their own discretion - if they have any!

SlowDragon
SlowDragonAdministrator in reply to saltylu

they have said that because my FT4 is always low (and just in range for the NHS tests) that it's just a me thing.

They could only say that .....if you were running around full of energy ....clearly that’s not the case

Considering you have fatigue and exhaustion....that very strongly suggests there is a thyroid problem

Are you not taking any levothyroxine?

If not, why not

Low Ft4 suggests you need to trial levothyroxine

What about vitamin D, folate, ferritin and B12 levels?

These are frequently very low when hypothyroid

What’s your diet like?

saltylu
saltylu in reply to SlowDragon

I'm not on any levo as no one within the GP surgery will prescribe me any, but I should be starting NDT at some point via a private doctor. Vit D, folate, ferritin and B12 are all fine, I had those tested the day I had my neurology appointment last week.

SlowDragon
SlowDragonAdministrator in reply to saltylu

Can you add actual results and ranges on vitamins

saltylu
saltylu in reply to SlowDragon

Not from my most recent ones as they were done in hospital and the doctors haven't uploaded them to my GP surgery records. The neurology consultant said all my blood tests were normal apart from the positive ANA and a slightly raised Plasma Viscosity

SlowDragon
SlowDragonAdministrator in reply to saltylu

So they may not be optimal....

NHS only tests for deficiencies

Eg vitamin D

Under 25nmol is deficient

under 50nmol is insufficient

Over 75nmol is optimal

B12 - range varies - deficient is typically under 180

With thyroid issues under 500 can cause symptoms

Ferritin - range varies - typically under 15 is deficient

Under 80 can cause symptoms

Under 50 can cause hairloss

helvella
helvellaAdministrator

Could your spine MRI be extended a little bit? To include the pituitary.

saltylu
saltylu in reply to helvella

I had a brain MRI in January and the pituitary looked normal then, I don't imagine anything would have changed but they might get it in the spine one.

helvella
helvellaAdministrator in reply to saltylu

I agree - so long as they looked at it properly.

Have you been tested for Lyme Disease? The NHS test is useless, you'd have to have it done privately. I wonder if your private doctor would consider it? Also, you say your adrenal test was normal. Which test did you have done? POTS strongly indicates adrenal issues - consider ordering a saliva cortisol test via the main ThyroidUK website if you haven't already done so.

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