Gillybean 1, Problem with daylight to night light and problem with sudden 10degree drop or increases in outdoor temperatures.

[Gillybean1]

Anybody have the same ? The light issues are a nightmare, for example different light levels in shops,from street to street, room to room. Symptoms range from dizzy to disorientated to short of breath.

With the temperature elevation or drop, symptoms with the former are akin to heat stroke, the gasping for breath,disorientated ,weak; and the latter akin to hyperthermia, muzzy head,slurry speech, weak.

Ive Hashi's, and complex malabsorbtion problems, hence only a gradual increase in Armour since January, am now on 1/2 grain split doses.

TSH 3.29

FT3 4.2

FT4 16.3

post awakening cortisol 47.97 (this is unusual extreme stress at present) other 3 samples normal range.

Iron bit lowside, D ok ,B12 ok,

I self medicate like many, ( this time last year i was housebound) have had to go it alone, there was always a concern from the very helpful NHS CFS team re giving me any Levo because of not being able to cool down. I opted myself for Armour to at least try something, in the hope that the T3 in it would help the cooling down,the heating up and the gut issues.

Clearly i need to increase meds again now, but how do you all cope with making that adjustment to winter temperatures, and varying homes central heating versus freezing outside ? Are some of you gasping for breath or slurry speeched and dizzy too ?

Im determined to nail this, not just because ive had 3 consultants tell me 'you wont get better' 'this is as good as you will get' and the creme de la creme 'this is your life get used to it'.

So very glad i found your site, and chose not to be written off.

Grateful for any comments. regards

Gillybean1

ps tests are uk ranges.

[Clutter]

Gillybean1, some of your symptoms are undoubtedly due to being undermedicated. Your TSH is too high at 3.29. Most people on NDT are comfortable with TSH <1.0 and FT3 in the top third of range, probably >5.5. You probably need to increase dose by 1/2 to 1 grain. It's usual to increase in 1/2 grain increments at 2 week intervals. UK ranges vary across regions so please include the ranges in future posts.

What are your iron, vitD and B12 results? Ok isn't as good as optimal.

I struggle with cold temperatures, no problem at all with warm/hot environments, and the grey days and darkness lower my mood.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[fixit]

Hi Gillybean, I have CFS and was bedridden for 6 months 3 years ago. I self medicate with Erfa after no help from the CFS and things have improved massively. I still have problems with temperature control as you describe but I now feel that I have more energy and can cope better with many of my remaining symptoms. I still haven't found my correct dose and am currently taking 2 and a half grains. I had a bit of a bumpy ride building up and it has taken me a year as I am very drug sensitive. I am back at work for an hr a day now which is a big achievement for me. Stick with raising your dose and things should gradually improve. Good luck.

[Gillybean1 in reply to fixit]

Hi fixit,

My apologies for not thanking you for your post 5 months ago (due to personal circumstances)

Well done to you for your determination to fight back thats a massive achievement. Dr Christine Page (book Frontiers of Health) said at one of her lectures re CFS/ME patients, that people are busy on the road of life and get to a fork in the road, they take the wrong fork and end up walking in quicksand. She describes the fatigue as the painful journey all the way back from the wrong fork and the return to health and vitality when we join the right road.

It sounded very airy fairy at the time, but i think i had a lightbulb moment with her words. Cracking books too.

I find the temperature issues quite scary, i have taken your advise and upped my NDT and expecting another tweak when bloods are back, but today for example the outdoor temps shot up to 15degrees today and i was gasping.

I know it could still be undermedicated, but i still have in my ear CFS dept saying Levo 'can' cause overheating, just not sure if that applies to NDT as well. Now its cooling im wrapped round the radiator....

I believe its Dr John C Lowe that wrote overheating/cant cool down, responds well to T3.

Oh im such a big baby, i need to get over myself !! Im impatient to run before i can walk, im sure you know what i mean, but our lovely bodies have other ideas.

All best wishes to you moving forward,

G.

[pinkjess17]

Hi Gillbean I think the light issues are low aldosterone as I have cfs and POTS and can't stand bright lights. Salt should help, sttm site has good info on this. I'm trialing NDT also but struggling to raise think it's the adrenals flapping. x

[Gillybean1 in reply to pinkjess17]

Hi pinkjess17

My apologies for not thanking you some 5months ago (due to personal circumstances) for your response to my post.

I know most recommend get your adrenals tip top first then go with the NDT, and i thought that made complete sense. I didnt get on with the bovine glandulars, but did with the NDT starting low, and yes i have increased it another notch now, but ive a hunch that my years of undertreated TPO's have put stress on my adrenals, so im now looking into taking glandulars without bovine adrenaline to avoid the jitters, because the light issues is really disorientating, and frustratingly it does not follow a pattern.....you know just when you think you have a eureka moment...aah it might be i did this ,that and some of that, that caused the problem; then you do/eat exactly the same things the next day/week and nothing happens !! Aahh c'est la vie.

Hope your adrenals have stopped misbehaving, yes the pink salts fantastic.

All best wishes.

G.

[1pet1pet1]

WHAT IS CFS please Catherine 1pet1pet

[Gillybean1 in reply to 1pet1pet1]

Hi 1pet1pet,

It stands for Chronic Fatigue Syndrome.

Best wishes G.