Re: Hypothyroid, new here & suffering from information overload

[Guest guest]

Hello Connie

Welcome to the forum.

I read your post with interest, please don't apologise for posting a long

message, it woke me from my brain fog.

One of the things that struck me was about your eating disorder. Some eating

disorders are linked to cortisol imbalances.

>(Weight problems have been my dilemma since childhood but since I've also

been battling with an eating disorder, I don't really have the evidence to

correlate it with the hypo/PCOS)

What kind of eating disorder do you have, if you don't mind me asking? I know

that cortisol levels in me affect urges to over eat. Also, insufficient

cortisol gives me suicidal and self harming ideation, and makes me ruminate over

various people in the past. I find taking hydrocortisone stops this.

http://www.antiagingresearch.com/Grow_Young_and_Slim1.pdf in here the author

mentions cortisol and over eating.

But importantly, too much cortisol is not good either and can stimulate the

appetite. Find 'cortisol deficiency' in the pdf if you're interested.

You mentioned an awful lot of stress; have you evaluated/considered adrenal

function?

So, are you ok on 200mcg T4 a day? If so why don't you just take this dose?

It's quite cheap to buy yourself. I have given up listening to (most) doctors.

Some people do better on NDT, some don't seem to. Then as you may have

gathered there are also other things to consider like 'ferritin' and other

nutrients.

Have you done this questionnaire - it may help you consider where your problems

lie (possibly not just thyroid). It's in this folder - hertoghe questionnaire:

thyroid treatment/files/MEDICAL%20QUES\

TIONNAIRES/

I have been told it's all mental health, yet therapy didn't help, but hormones

have helped. There is a phrase 'push where it moves' - if thyroid helps, then

take that.....

>My next appointment with the GP is next week. Sorry, if this sounds silly but

what can I do to get the new one to listen? I'm so exhausted, for one, so it's

hard to get this all in my head. But due to the previous experiences, I already

expect a negative outcome. Can I insist on getting a referral to an endo? But

then, from what I gathered, most give unhelpful advice too.

I would just say that you felt better on 200mcg T4 a day (if this is the case).

Will he or she prescribe this? I think I would be inclined to see Dr Skinner

not an endo. I appreciate you are very hard up, but some doctors will only go

by TSH (let alone free t4) and may not be helpful. The other option is to self

treat as you have done before, by putting it up to 200mcg?

I am sorry if I have misunderstood or missed anything, brain's not working quite

so well

Have you considered trying to get PCOS treated - i gather they can give you

metformin? I think PCOS can be linked to depression, too?

Chris

>

>

[Guest guest]

Hi Chris

.... and thanks for the welcome! Yup, it was a long post and still only a

snippet. Thanks for the pdf ... more to read, help! And, here's more-

First off, I was on 200mcg only for a few weeks (after upping the dose myself

from 150mcg)in summer 2010, my then GP at uni (reg. at surgery 2009-summer 2011)

recommended to go down to 175mcg. But sadly, this latest new surgery where I

registered last fall, didn't want to listen nor read my file, went solely by

blood test results and put me back on 150mcg. So, currently, I'm back on 150mcg

which is why I've got all those symptoms from 2010 back.

On 200mcg, after a while I had issues with 'crackling' knees (weird sound!),

that went away on 175. Not sure if 175mcg is optimal but it was definitely

better than feeling like having my head crushed and wanting to sleep all day ...

let's just say, I was able to 'cope' better. I didn't know you can get T4

without prescription? Where? Overseas? Domestic?

A while back, I read an article about cortisol and its link to weight gain, and

I've noticed the 'adrenal stress function' is often discussed in relation to

hypo. So, would hydrocortisone be something to regulate this? Is it safe to

self-medicate? As I said, it's so much info coming from all sides, I need some

order in which to gradually progress with learning the ins and outs of the

condition without being simply confused and overwhelmed by the tremendous amount

of info floating around.

I'd definitely suspect that my adrenal function could be affected. I've got a

lot of anxiety/panic issues going on, although never officially diagnosed, I'd

say the last job left me with some kind of traumatic stress disorder - I'm

constantly on hyperalert; I wake up after 4 1/2 hrs with a panicky feeling in my

stomach about 100 different things. That can't be good for the adrenal glands if

it goes on for months/years? I could spend my last few quid on such adrenal

stress profile test but if the GP has no clue what to do with it and doesn't

want to be put out, what good does it?

Eating disorder: bulimia with off/on phases. Maybe I'm lying to myself but I

think it's got worse since 2006 with rarely any 'off' phases any more (I've had

it for 32 yrs, how sad is that!), recently I concluded it's my way of dealing

with stress and apparently, since I've got no other outlet (I quit smoking in

2006, don't drink, drugs, boredom rules). In 2010, when all these weird symptoms

started, I also had the worst (sugar) cravings ever, I could hardly concentrate

on my studies, terrible. I remembered a friend telling me once about candida

overgrowth and that this is the reason for the cravings, so that summer, when I

started medicating myself, I also went on Atkins (low-carb), cut out all sugar,

took supplements with anti-fungal effect and I was actually craving- and

binge-free until early 2011 when this nightmare in student accommodation

started. I gradually lost control and fell off the wagon. I just can't deal with

stress when it's coming from different directions at the same time any more.

About 10 days ago, I started a new low-carb (Harcombe diet) regime, due to the

idea of getting the problem of possible candida, hypoglycemia under control. So,

now I'm off caffeine as well. But again, praised as giving rapid weight loss, I

think I basically just halted the constant weight gain, absolutely no weight

lost which makes it hard to stay motivated.

I was on Metformin for a while in London. Thanks to the antidepressants I was on

from 2000-6, I gained nearly 90 lbs (lost interest to purge, so it was only

binging) which made me borderline diabetic. I did lose 75 lbs within 1 year

(strict diet, exercise). Then the medication ran out, I think the next GP tested

my glucose, concluded it's 'normal' and said I didn't need it any more. The

problem is really that none of the GPs makes the effort to look at my medical

history or dismiss it too quickly - because it's convenient - as mental health

problem.

Are there any new PCOS treatments out now? In 1999, I was offered the

contraceptive pill but being a smoker then and late 30s, I politely declined.

I think I'd like to try NDT (although I'm a bit repulsed by the thought of

ingesting an animal organ ... says the meat-eater) but if you can't even talk to

the GP about your overt symptoms, I don't think he's ever heard of this

alternative. Are there members on this group who self-medicate without

prescription with NDT?

Connie

>

> [snip]

> One of the things that struck me was about your eating disorder. Some eating

disorders are linked to cortisol imbalances.

>

> Have you considered trying to get PCOS treated - i gather they can give you

metformin? I think PCOS can be linked to depression, too?

>

> Chris

[Guest guest]

Hello again Connie

>

> ... and thanks for the welcome! Yup, it was a long post and still only a

snippet. Thanks for the pdf ... more to read, help! And, here's more-

Please do read it though - just the bits on bulimia??

>

> On 200mcg, after a while I had issues with 'crackling' knees (weird sound!),

that went away on 175. Not sure if 175mcg is optimal but it was definitely

better than feeling like having my head crushed and wanting to sleep all day ...

let's just say, I was able to 'cope' better. I didn't know you can get T4

without prescription? Where? Overseas? Domestic?

Yes, there are some overseas pharmacies. Look in the files section:

thyroid treatment/files/INTERNET%20PHA\

RMACIES/ if you could see a decent doct that'd be best....

Please also look at the questionnaire I mentioned. Dr Hertoghe's book is

excellent, it covers every hormone:

http://www.amazon.co.uk/Hormone-Solution-Dr-Thierry-Hertoghe/dp/1400080851/ref=s\

r_1_1?ie=UTF8 & qid=1329162930 & sr=8-1

> A while back, I read an article about cortisol and its link to weight gain,

and I've noticed the 'adrenal stress function' is often discussed in relation to

hypo. So, would hydrocortisone be something to regulate this? Is it safe to

self-medicate? As I said, it's so much info coming from all sides, I need some

order in which to gradually progress with learning the ins and outs of the

condition without being simply confused and overwhelmed by the tremendous amount

of info floating around.

No, I would not self medicate without thorough testing. Again, ideally you'd

find a good doctor. I would not self treat on symptoms alone, and would want

thorough testing, including 24 hour urinary free cortisol, and an adrenal saliva

test, and 9am cortisol and cortisol binding globulin test. I do not advocate

taking hydrocortisone. Some people

take adrenal glandulars, which are supposed to help support the adrenal glands.

> I'd definitely suspect that my adrenal function could be affected. I've got a

lot of anxiety/panic issues going on, although never officially diagnosed, I'd

say the last job left me with some kind of traumatic stress disorder - I'm

constantly on hyperalert; I wake up after 4 1/2 hrs with a panicky feeling in my

stomach about 100 different things. That can't be good for the adrenal glands if

it goes on for months/years? I could spend my last few quid on such adrenal

stress profile test but if the GP has no clue what to do with it and doesn't

want to be put out, what good does it?

Have you been tested for sleep apnoea - I would wake gasping for breath, anxious

(better since being treated). Melatonin can help with sleep, too. I used to

have a lot of daytime anxiety, with 'flashbacks' - i suspect this was some kind

of hyper-adrenaline symptoms. I suspect this was hormone related, as taking

hydrocortisone and dhea and pregnenolone has resolved this.

> Eating disorder: bulimia with off/on phases. Maybe I'm lying to myself but I

think it's got worse since 2006 with rarely any 'off' phases any more (I've had

it for 32 yrs, how sad is that!), recently I concluded it's my way of dealing

with stress

but why do you get these urges/need to deal with stress by over eating? It

could be high or low cortisol. These are low cortisol symptoms:

Cortisol

My face looks thinner

My friends call me skinny

I have eczema, psoriasis, urticaria (nettle rash), skin allergies, or other

rashes

My heart beats quickly

My blood pressure is low

I crave salt and sugar (to the extent of binging)

I have digestive problem

I have allergies (hay fever, asthma, etc.)

I'm stressed out

I'm easily confused

Dr Hertoghe on COrtisol:

http://www.youtube.com/watch?v=pUqjOXeoFRo & feature=related

>since I've got no other outlet (I quit smoking in 2006, don't drink, drugs,

boredom rules). In 2010, when all these weird symptoms started, I also had the

worst (sugar) cravings ever, I could hardly concentrate on my studies, terrible.

I remembered a friend telling me once about candida overgrowth and that this is

the reason for the cravings, so that summer, when I started medicating myself, I

also went on Atkins (low-carb), cut out all sugar, took supplements with

anti-fungal effect and I was actually craving- and binge-free until early 2011

when this nightmare in student accommodation started. I gradually lost control

and fell off the wagon. I just can't deal with stress when it's coming from

different directions at the same time any more.

That sounds like it could be cortisol related to me.

> I was on Metformin for a while in London. Thanks to the antidepressants I was

on from 2000-6, I gained nearly 90 lbs (lost interest to purge, so it was only

binging) which made me borderline diabetic. I did lose 75 lbs within 1 year

(strict diet, exercise). Then the medication ran out, I think the next GP tested

my glucose, concluded it's 'normal' and said I didn't need it any more. The

problem is really that none of the GPs makes the effort to look at my medical

history or dismiss it too quickly - because it's convenient - as mental health

problem.

This is a story we've all heard and experienced too many times :-(

> Are there any new PCOS treatments out now? In 1999, I was offered the

contraceptive pill but being a smoker then and late 30s, I politely declined.

i dont know of any, isnt it just metformin?

> I think I'd like to try NDT (although I'm a bit repulsed by the thought of

ingesting an animal organ ... says the meat-eater) but if you can't even talk to

the GP about your overt symptoms, I don't think he's ever heard of this

alternative. Are there members on this group who self-medicate without

prescription with NDT?

I think there are lots; some people get it on nhs prescription...i take it on

private prescription. i don't really even think about it being an animal

product :-)

If it was me, I'd start with reading Dr Hertoghe's book (and watching the clip

on yotube). He is excellent. I hope your GP will agree to giving you more

thyroxine - all you can do is try to ask? Some people report doing better on

thyroid hormone at night - have you tried this?

What's your diet like now? have you had things like ferritin checked?

Chris

[Guest guest]

Hi SheilaThanks for not forgetting me! I'm so grateful for the directions you've given - I suppose, the next step is to test adrenal function as and you have suggested.I had a look through the files section before and came across the Genova Diagnostics document - maybe it's the foggy brain but it's my understanding that you'd have to come to London to use their services? As I said before, finances are a big problem for me or otherwise I'd already taken most of the tests those private labs have on offer I might have to look into finding a testing lab in the Midlands to save on travelling expenses (and travelling time)?>[snip] > Ask for a referral to an endocrinologist for a second opinion and give him a> brief history of what your experiences have been so far. With regard to this, I've seen people asking you to email them a copy of thyroid-'friendly' practitioners - does it include endos as well and even if not, could I have that list, too, please?> Regarding your weight gain, which won't shift, and which many of us> understand completely, join our Chat forum (Lilian will have sent you an> invitation when you first registered for this main forum. Thanks for the tip, I'll check it out.It's really such a shame, there's so little you can do when you're on your own, seems really like playing the lottery in terms of finding an open-minded GP who's willing to listen and investigate. Plus, the condition is so debilitating and robs you of the energy to keep going, a bit of a catch 22. Connie

[Guest guest]

yes the saliva test may help clarify what is going on. ideally, it'd be good to

get a battery of tests done. i know things aren't ideal though :-(

Dr Hertoghe's book is easy to understand, too, I think. well worth a read. It

covers all hormones...

Chris

>

>

>

> Hi thanks once more for going through part 2 as well.

>

> I'll definitely have a look at yesterday's pdf and will check out the Dr

Hertoghe's book/video clip, too. Got started on Dr. Durant-Peatfield's book

yesterday, this seems to be written in simpler language and not the fancy

medical lingo, so even I should eventually understand a bit more how hormones

work.

[Guest guest]

>> I had a look through the files section before and came across the Genova

> Diagnostics document - maybe it's the foggy brain but it's my

> understanding that you'd have to come to London to use their services?

No, you can just get the blood taken by a private hospital , or perhaps your GP

surgery or phlebotomy dept at local NHS hospital if you're lucky. you just send

the sample off to them. It can be around £15 to get the bloods taken.

I think Genova can be quite expensive.

You can get about 40 tests done, including 24 hour urine (thyroid, growth

hormonen, sex hormones,adrenal hormones etc) for about £400 in Belgium (again,

via post/courier). i dread to think how much that'd cost you at other places.

Problem is you do need a prescription for this. The lab will accept UK

prescriptions though, it's just getting one. i don't know how that'd work.

chris

>

> I had a look through the files section before and came across the Genova

> Diagnostics document - maybe it's the foggy brain but it's my

> understanding that you'd have to come to London to use their services?

[Guest guest]

Oh, thanks for clearing this up! I guess if I give them a call, they'll tell me how to go about it. £400 for 40 tests? Sweet. Not that I've got the money available but good to know. Well, if they accept UK prescriptions, I can't see why a GP wouldn't issue you one, since there's no cost for the NHS involved? >> >> I had a look through the files section before and came across the Genova> > Diagnostics document - maybe it's the foggy brain but it's my> > understanding that you'd have to come to London to use their services?

[Guest guest]

For the Genova Diagnostic Salivary Adrenal Profile and the other

tests you might need doing, they will send you out the appropriate 'kit' to

collect samples of urine, blood, saliva etc. You need to find a doctor/nurse

who will be prepared to draw your blood, usually your own surgery nurse might

do this or your doctor, or find a private hospital in your area where they will

do this for you. You then just send off the samples to Genova and they will

send you the results in 10 to 14 days,. You then let us know on the forum what

these results are, and post the reference range for each of the tests done too

and we will help with their interpretation.

Luv - Sheila

I had a look through the files section before and came

across the Genova Diagnostics document - maybe it's the foggy brain but it's my

understanding that you'd have to come to London to use their services? As I

said before, finances are a big problem for me or otherwise I'd already taken

most of the tests those private labs have on offer I might have to look into

finding a testing lab in the Midlands to save on travelling expenses (and

travelling time)?

[Guest guest]

Sheila & ChrisYou have no idea how much your advice has helped me already!- I am reading Dr. P's 'Thyroid Power' book;- ordered Dr. Hertoge's 'Hormone' book;- ordered a test kit for the adrenal stress profile from Genova today (very nice person on the phone);- been checking out the various docs & posts on this message board.Suffice to say, just knowing that I'm not completely at the mercy of some ignorant GP has given me an immense uplift! It's somewhat comforting and yet infuriating to see that I'm not alone with this and so many others are subjected to unnecessary suffering, too.Also, I went back on the 175mcg (up by 25 from 150mcg) 'unauthorised' levo dose last Sunday (the dose that kept me going - relatively speaking - from summer 2010 till October 2011 despite several phases of extreme stress). It's day 4 and the lights are slowing going back on again. I managed to get several things done in short time this morning whereas the last 4 weeks I hardly was able to get out of bed!So, in short, thanks for giving me back hope! If not sooner, I shall be back with my test results.Connie>> For the Genova Diagnostic Salivary Adrenal Profile ... [snip], they will send you out the appropriate 'kit' to collect> samples [snip] ... You then let us know on the forum> what these results are, and post the reference range for each of the tests> done too and we will help with their interpretation.> > Luv - Sheila>

[Guest guest]

That's ok Connie

Please keep us informed of the progress.

good to hear about the T4 helping.....

Dr Hertoghe's book is very good, I think. Please let me know if you have any

questions .....

chris

>

> Sheila & Chris

> You have no idea how much your advice has helped me already!

> - I am reading Dr. P's 'Thyroid Power' book;- ordered Dr. Hertoge's

> So, in short, thanks for giving me back hope! If not sooner, I shall be

> back with my test results.

> Connie