Functional medicine advice is going in circles

[Jamima]

I had a brief introductory telephone consult with a functional medicine doctor today. It was very brief, 10 mins, in which I outlined my symptoms and the results of thyroid and cortisol tests. The doctor said we can definitely help you, but she seemed distracted, unable to provide a date or the necessary info for emailing. I'd already sent ahead a document I've put together with last 2 years test results and a typical day for me, as well as most bothersome symptoms, but she hadn't received it, not sure why. But again reiterated we can definitely help you, I think we'd start with DHEA, I told her at that point that I've already tried DHEA and Pregnenolone and that they both make me even more sedated, presumably because they convert to oestrogen and that makes me feel hypo. She then said we work alongside a private endo I think we should consult with her. I've been here, many times, and today in particular has been a really difficult day - freezing all day, unbelievable brain fog, under a duvet on the sofa with central heating and a room heater on just to stay comfortable. Another day wasted.

I've recently been given details of someone who can provide NDT and I'm thinking, do I just go for it? I really can't take more waffle and experiments from so called experts who seem to ignore the info in front of them and offer yet another round of treatments I know aren't going to work - I've tried almost everything that should help, except actual thyroid hormones, (apart from metative), I've had enough, tired of wasting my life and just want to move in a direction that might show some light.

What side effects should I expect on NDT and how would I know if it is/isn't working?

Any help appreciated.

[greygoose]

You shouldn't expect any side-effects. If you expect them, you might just find them! Just take it as it comes.

If you haven't been on any thyroid hormone replacement before, then I would suggest you start on 1/4 grain for a week or so, then increase by 1/4 grain every two weeks until you get to 1 grain, then hold for six weeks, retest and see how you feel.

BUT before starting NDT, make sure your nutrients are optimal. NDT won't 'work' if they're not. You need to test the basic nutrients: vit d, vit B12, folate and ferritin. And, supplement accordingly if they are suboptimal - we can help you with that.

I agree with you that often self-treating is the only option. I don't have a very high opinion of Functional Medicine to begin with - may be fine with some ailments/diseases, but they don't know any more about thyroid than your usualy bog-standard GP from what I've seen. And, if they're going to start liasing with an endo, I really don't hold out much hope of a successful outcome. Waste of money, in my opinion. And, obviously your first encounter didn't make a very good impression, so...

[Jamima in reply to greygoose]

Many thanks Greygoose, I've listed below my last medichecks results from 29/8/21. Do I need to test again before starting NDT?

Yes, I agree, re experts, it's no wonder people self medicate, what an absolute shambles our NHS and private healthcare is for UK thyroid patients. Why would we make these symptoms up? And those ranges! What the hell is wrong with treating symptoms and tweaking from there? I've actually watched endos/gp's google symptoms in front of me and I suspect that was what the functional doc was doing today and why she was so distracted, unbelievable.

I've got nothing to lose but more wasted days.

MedichecksTSH (0.27-4.2)

FT4 (12-22)

FT3 (3.1-6.8)

Vit b12 (25.1-165)

Vitamin D (50-200)

TSH - 1.57

FT4 - 13.2

FT3 -4.3

Vit B12 - 164

Ferritin -94

Vit D -131

[greygoose in reply to Jamima]

Your FT4 is very low. And, your TSH doesn't reflect that. I wonder if you have a pituitary problem. Have you ever had cortisol tested?

Your nutrient levels are good. But, no folate result?

[Jamima in reply to greygoose]

Apologies -Folate (2.4-14.5) Result - 8.4

I think I have secondary hypo, I fit all the symptoms and test results. My last 4 point cortisol and dhea were low (pic below) but I'll need to do another 4 point test. Doc today is apparently sending me one as she gets them cheaper.

<IMG_0216.jpeg>

[greygoose in reply to Jamima]

Yes, your cortisol is low all through the day. DHEA low, too. So, very likely Secondary hypo. Have you had other pituitary hormones tested?

[Jamima in reply to greygoose]

No, my old GP refused to do them, I changed GP and they referred me to endo who says I'm healthy, I'm "simply at the bottom of the healthy range" no need for further testing, my lightheadedness on standing is normal, he gets it too and the hypoglaecimic/adrenaline rushes I get can be treated by simply having a sports drink. So, yeah.

Is it possible to arrange these privately, I understand they can sometimes be inconclusive.

[greygoose in reply to Jamima]

I'm really not well up on what you can and can't get tested privately in the UK, because I live in France. And, here, we can't get anything tested privately! But, there's information on blood test companies here:

thyroiduk.org/help-and-supp...

[Jamima in reply to greygoose]

thank you

[greygoose in reply to Jamima]

You're welcome.

[Jamima in reply to greygoose]

Apologies, very foggy today. I did arrange for my own prolactin as part of a sex hormone test with medichecks.

Prolactin (102-496)

19/3/21 - 419

19/5/21 - 219

[Jamima in reply to greygoose]

Regenerus Labs 24hr Saliva Home Cortisol Test - 27.02.20

Cortisol AM - 8.7

Ref (7.0-30.0)

Cortisol Noon - 3.1

Ref (2.1-14.0)

Cortisol Evening - 2.7

Ref (1.5-8.0)

Cortisol Night - 0.72

Ref (0.33-7.0)

DHEA 40

Ref (106-300)

[waveylines]

Whats the range for your B12 test....on the range for my b12 test 164 would be very low indeed but it does depend on what b12 test you have used. . We need B12 as it helps with uptake and conversion of thyroid hormones.

[Jamima in reply to waveylines]

Hi waveylines - it 25.1-165 so I'm right at the top end, probably because I use a sublingual B12 supplement daily.

[waveylines]

Yes the supplement would make the difference. OK- the range on mine goes up to 900.... thats why I asked. So ure right ure at the top of the range....good one less thing to think about!!