NHS Endo test results - all normal - thoughts please ...

[rachelleigh]

Hi - I have finally been to see an NHS endocrinologist. It felt like something of a 'tick box exercise'. My GP agreed to the referral because I had a low serum cortisol result and because (whilst my TSH is 'normal') my FT4 is at the bottom of the scale and I've been pushing for investigation of a possible diagnosis of secondary hypothyroidism. I have a history of PCOS and am currently peri-menopausal. I have felt awful for the past 18 months - eased a bit by the correction of various vitamin and mineral deficiencies by a private functional nutritionist. The Endo described me as euthyroid and then requested the following tests - all of which have come back as 'normal'. I'm wondering if any of the knowledgeable people on this forum could take a look at these results and tell me if anything appears to be sub-optimal. I don't feel normal and don't have a clear sense of what the Endo has tested for and why. With thanks for taking the time to read this. Reference ranges included at the end of each line where given.

Rachel

URINE CREAT. 6.1 mmol/L

URINE SODIUM 86 mmol/L

URINE OSMOL. 504 MOSMOL/KG 350-1000

SODIUM 138 mmol/L 135-145

POTASSIUM 4.2 mmol/L 3.5-5.0

UREA 4.2 mmol/L 2.5-6.7

CREATININE 54 umol/L 49-90

eGFR >90 ml/min/1.73m*2

BILIRUBIN 14 umol/L 0-21

ALT 12 IU/L 10-45

ALK.PHOSPHATASE 68 IU/L 30-130

ALBUMIN 40 g/L 32-50

CALCIUM 2.29 mmol/L

ADJUSTED CALC. 2.25 mmol/L 2.20-2.60

PHOSPHATE 0.79 mmol/L 0.7-1.45

T. CHOLESTEROL 3.1 mmol/L

TRIGLYCERIDE 0.70 mmol/L 0.55-1.9

HDL CHOL 1.5 mmol/L

CALCULATED LDL 1.3 mmol/L

CHOL/HDL RATIO 2.1 ratio

NON HDL CHOL 1.6 mmol/L

OESTRADIOL 691 pmol/L 77-2400

TESTOSTERONE 1.1 nmol/L 0.5-2.6

LH 2.7 IU/L 2-100

FSH 3.4 IU/L 1.0-30.0

DHEAS 3.3 micromol/L 1.0-12.7

PROLACTIN 303 mU/L 110-560

IGF-1 22.6 nmol/L 6.4-31.0

HAEMOGLOBIN 145 g/L 120-150

WHITE CELLS 7.32 x10*9/L 4.0-11.0

PLATELETS 323 x10*9/L 150-400

HAEMATOCRIT 0.447 L/L 0.30-0.46

RED CELL COUNT 4.63 x10*12/L 3.8-4.8

MEAN CELL VOL. 96.5 fl 83-105

MEAN CELL HGB 31.3 pg 27.0-32.0

MEAN CELL HGB CONC 324 g/L 315-345

NEUTROPHILS 4.40 x10*9/L 2.0-7.0

LYMPHOCYTES 2.41 x10*9/L 1.0-4.0

MONOCYTES 0.41 x10*9/L 0.2-1.0

EOSINOPHILS 0.07 x10*9/L 0.0-0.5

BASOPHILS 0.03 x10*9/L 0.0-0.1

NRBC A 0.00 x10*9/L 0.0-0.5

IG 0.02 x10*9/L 0.0-0.1

NRBC % 0.0 /100WBC 0.0-0.2

MPV 10.2 fl 9.0-12.1

HBA1C (IFCC) 30 MMOL/MOL 20-41

HBA1C (DCCT) 4.9 % 4.0-5.9

[Marz]

A good selection of tests but nothing specific for the thyroid ...

[rachelleigh in reply to Marz]

Thanks Marz - he was happy to accept previous recent test results so didn't retest these. Again - those all come back within the NHS definition of normal - but having posted the thyroid results here previously - the FT4 was right at the bottom end of the scale and was repeatedly flagged by forum members as indicative of possible secondary hypo...

[Marz in reply to rachelleigh]

So what did he say about secondary Hypo ?

[rachelleigh73 in reply to Marz]

He didn't - and I only spotted the euthyroid comment on the report to the GP.

[Hidden]

There's no cortisol tested either? What was it when you went to the GP?

[rachelleigh73 in reply to Hidden]

Thanks Pauline - I should have had a short synacthen test on the day but they had to re-schedule as no phlebotomist available in the department. Cortisol was 190mmol at 9am.

[Hidden in reply to rachelleigh73]

Do you know how conversant he is with pituitary/adrenal issues? Sadly many of them aren't experienced in it! Are they going to do the Synacthen test?

[rachelleigh in reply to Hidden]

I've asked to see the consultant for my next consultation - he has a reasonably good online reputation but I will have to wait five months to see him personally. I'm chasing up the SST. My feeling is that the NHS won't be able to help much - especially with all my results falling within the 'normal' ranges. But I know from addressing vitamin and vitamin deficiencies that being within the 'normal' range can be meaningless - which is why I'm wondering if any of the results posted above are similarly actionable. But to be honest I don't really know what I'm looking at. For example is the fact that my DHEAS or Oestradiol are at the lower end of their respective ranges something to address with supplements? My take from this and other thyroid forums is that patients are often forced to self medicate and therefore need an advanced knowledge of test results to know how best to interpret them ...

[greygoose]

IGF-1 22.6 nmol/L 6.4-31.0

That's a test for Human Growth Hormone, another pituitary hormone. The result is not bad. So, he did take on-board the Secondary Hypo theory. However, that's still not proof that you don't have Central Hypo. Because you could have TSH specific hypopituitary problems. Or, it could be the hypothalamus that isn't stimulating the pituitary to make TSH. So, these tests are inconclusive for Central hypo.

But, the treatment would be the same as for any other form of hypo, so he could just trial you on levo and see if it helps. If he wanted to.

Apart from that he's tested liver, kidneys, and many other things. Seems your in good health! But, I can't find a post of yours with thyroid tests in it.

[rachelleigh in reply to greygoose]

Thanks Greygoose - I appreciate your advice - especially about the potential for a levo trial. Geneva private test results from my previous post:

Total T4 - 62 (range 58-161)

TSH - 1.32 (range 0.40-4.00)

FT4 -10.3 (range 11.5-22.7)

Free T3 - 3.4 (range 2.8-6.5)

FT4:FT3 ratio - 3

rT3 - 0.22 (range 0.14-0.54)

TPO - 15 (range less than 34)

[greygoose in reply to rachelleigh]

Yes, both your FT4 and FT3 are very low - FT4 below range, so doctors should be taking this seriously. It really does look like Central Hypo. However, doctors have this idea that CH is very rare, and because they think it's rare, they won't even consider it! Stupid, I know, but there you go. You do need to insist on pursuing this. Your FT3 level will probably go lower, because without the T4 to convert, it's not possible it will stay at this level. Don't let them bully you into thinking it's not possible you have CH, because I really think you have.

[rachelleigh in reply to greygoose]

The NHS thyroid test parameters put me right on the cusp of 'normal' - and everyone is telling me my results are 'fine' - as though I'm just 'worried well' and not worth taking seriously. They are simply not seeing what you're seeing. Thanks for the encouragement. I can see me being one of those who self medicates but will do my best to see the NHS process through before I go down that route.

[greygoose in reply to rachelleigh]

They probably don't have my experience! lol Sorry, it's not funny. But they are only looking at the TSH. It's the Frees they should be looking at. But, as I said, it's probably going to get worse, so one day they will have to take notice. I know that's not much consolation, but it's all I can offer at the moment.

[rachelleigh in reply to greygoose]

Hurrah lol! You're right - it's not funny but it is how it is. Whether I wait that long is another matter. I'm at the stage of wondering what harm I can do by self medicating ...

[greygoose in reply to rachelleigh]

Very unlikely you'll do any harm if you stick to the rules. With all hormones, you start low and increase slowly:

T4 - start on 50 mcg and retest every six weeks, increase or decrease by 25 mcg as necessary.

T3 - start on 6.25 mcg and increase by 6.25 mcg every two weeks. Once you get to 25 mcg, stick for six weeks and retest.

NDT - start on 1/4 grain, increase by 1/4 grain every two weeks until you reach one grain. Stick for six weeks and retest.

Most important to test nutrients and optimise for optimal synthesis of thyroid hormones.

How many doctors could recite you that off the top of their heads?

[rachelleigh in reply to greygoose]

I am suitably impressed! Thanks again Greygoose - I really appreciate your input tonight and your contribution to the forum in general - you really know your stuff. Bed for me now - hope you sleep well when you get to yours ...

[greygoose in reply to rachelleigh]

lol

You're welcome. Good night, sleep tight, watch the bugs don't bite!

[Peroxideblader]

hi there I'm in just the same boat symptoms wise and the lovely people on here picked up on secondary hypothyroidism too when I posted my results yet my doctors all 4 different ones said ALL NORMAL even though I had low to normal tsh very low t4 and below range t3. I'd done my own private thyroid blood tests first as I got nowhere with even getting tested at first with my gp and because I'm been going through perimenopause like you for 7 years they dismissed everything with being The Change!!! they wouldn't even refer me to an nhs endo because they said I'm all fine tests all normal yeh right@@

I am going to see a private endocrinologist who also deals with menopause as I know there's an issue with my thyroid and all points to secondary I. e pitituary like you...I was meant to go late last year but family health issues stopped me.

I hope you get somewhere it's so frustrating isn't it

[rachelleigh in reply to Peroxideblader]

Good luck to you too Peroxideblader - I'd be interested in how you get on with your private endo. I have that option available and may go down that route if I get too frustrated with the NHS - my only concern is that going private seems to be no guarantee of any better treatment ...

[Peroxideblader]

Hi there I agree there's still not much hope even privately but I have no other choice as my gp won't refer me to an nhs endo as although t4 and t4 are very low as my tsh is fine he sees no issue with my thyroid he says I suffer from health anxiety!! the cheek eh..or menopause despite being ill for 7 years and 4 family members have and had hypothyroidism. it's a horrible thing when the nhs don't trust you and think you're a hypochondriac x