Re: Intollerance issues with NDT again..AAARGH!

[Guest guest]

Hmmm..back on NDT two weeks now & experiencing intolerance issues again..last

time I hit problems at two grains,this time at half a grain..after stopping NDT

I discovered I had a ferritin level of 33,I started taking iron bisglycinate

50mg 2x daily with 2 grams vit c,gave myself a couple of weeks head start on

iron before restarting NDT.

I noticed mild improvements in mood & energy after starting iron..two weeks

later I restarted NDT at 0.25 grains..the first day I felt pretty good,less

brainfog,improved mood..next day felt like crap,tired,achy,really bad

brainfog,this didn't lessen over the following couple of days so decided to

raise to 0.5 grains..within a couple of days I had all the intolerance issues I

previously experienced at two grains,anxious,shaky,jittery,muscle weakness,short

of breath on physical exertion..been on 0.5 grains for 10 days & still feel

awful,anxious/hyper,my pulse is still low 60's & no increase in temps..for some

reason my body cannot tolerate NDT,I know my ferritin is low but last time I

reached 2 grains before encountering problems,this time I only reached

0.5..think I'll have to stop again:(

I asked my GP yesterday to retest iron,full panel with ferritin,he thought that

as my RBC,HB & Haematocrit where all top of range a ferritin level of 33 wasn't

a problem & that I should not be taking iron as my blood was quite thick..he

wouldn't retest.

I also think I need off HC,I have noticed no improvements in any low cortisol

symptoms at doses up to 35mg,I'm on 27.5mg at the moment..what I have noticed

since starting HC last October is the four extra inches of bloated fat around my

waistline..I have always been a 32in waist,now thanks to HC it's 36in..I think

it's time to stop thyroid meds again,wean off HC & reassess everything from

scratch.

I have also discovered that my Total Testosterone level of 12.7nmol/L is very

low for a 45 year old guy,in fact my level is the average for a 80-100 year old

man..my GP says it's in range so is perfectly normal..AAAAARGH!..I managed to

convince him to order more sex hormone tests,I'm sure low T is a major cause of

a lot of my symptoms..I believe oestrogen dominance can also cause thyroid

cellular uptake problems,I certainly have a few symptoms that could be related

to high oestrogen,maybe that's why I cannot tolerate NDT..GP agreed to test my

estradiol levels so perhaps I'll have a few answers next week...starting to

think I have a lot more hormonal issues than just adrenals & thyroid.

In frustration..

~Andy~

[Guest guest]

Hi

have you tried t4 on it's own before? I was just wondering if you were a good

converter and would do better on that - just a thought

have you had your pituitary looked at?

i think your testosterone is low too but what were your SHBG results, do you

know? and LH, FSH ?

also have you done Hertoghe's questionnaire?

thyroid treatment/files/MEDICAL%20QUESTIONNAI\

RES/Hormone%20Questionnaire.Dr%20Thierry%20Hertoghe.xls (it was in a diff place

but looks like it's been moved to here now) that shoudl give an indication what

else you may be low in. the questions are pretty accurate: i quizzed low in GH

and preg and Testosterone, and indeed tests confirm i'm low in all 3.

> I also think I need off HC,I have noticed no improvements in any low cortisol

symptoms at doses up to 35mg,I'm on 27.5mg at the moment..what I have noticed

since starting HC last October is the four extra inches of bloated fat around my

waistline..I have always been a 32in waist,now thanks to HC it's 36in..I think

it's time to stop thyroid meds again,wean off HC & reassess everything from

scratch.

perhaps you're taking too much? could it be that if you 've been low on

cortisol for a long time your receptors are extra sensitive and a little goes a

long way? it is also argued that that the dose your taking is greater than

physiological replacement http://jama.ama-assn.org/content/281/20/1887.extract

.. do you know what your CBG levels were too? and were you able to get a 24 hr

urinary free cortisol test to see what the daily production was? i've heard that

-people with low saliva cortsiol can have normal urinary free cortisol over the

coruse of a day as it's used up fast. whether that's true or not i don't know.

Baschetti has some good info on cortisol and licorice which may apparently help

CFS, tho if u use licorice i think it drops your Testosterone lower

http://www.newtreatments.org/fromweb/licoriceconversation.txt

> I have also discovered that my Total Testosterone level of 12.7nmol/L is very

low for a 45 year old guy,in fact my level is the average for a 80-100 year old

man..my GP says it's in range so is perfectly normal..AAAAARGH!..I managed to

convince him to order more sex hormone tests,I'm sure low T is a major cause of

a lot of my symptoms..I believe oestrogen dominance can also cause thyroid

cellular uptake problems,I certainly have a few symptoms that could be related

to high oestrogen,maybe that's why I cannot tolerate NDT..GP agreed to test my

estradiol levels so perhaps I'll have a few answers next week...starting to

think I have a lot more hormonal issues than just adrenals & thyroid.

can you get checks on progesterone and pregnenolone? Progesterone balances

estrogen, apparently.

http://www.hertoghe.eu/nl/samenvattigen/abstr/progesterone-therapy-in-men-crucia\

l-for-men-over-40/

Nick at Androids is very helpful (google that, i'm at work so i can't!) and can

maybe point you in the right direction with testosterone issues, and there's a

hypogonadism group for testosterone that might help ( i

think)

[Guest guest]

Hi Chris..thanks for your reply:)

have you tried t4 on it's own before? I was just wondering if you were a good converter and would do better on that - just a thought

No I haven't,good point..I'll keep it in mind..I

stopped taking NDT today,guessing it's either my low ferritin causing intolearance,maybe an RT3 issue,or a conversion issue..so many possibles..AAARGH!

have you had your pituitary looked at?

i think your testosterone is low too but what were your SHBG results, do you know? and LH, FSH ?

No I haven't had my pituitary looked at yet..I'm hoping the tests I asked my GP to perform will show if there's a primary or secondary problem..the tests my GP agreed to are as follows...

Free Testosterone

SHBG

LH

FSH

Prolactin

PSA

Estradiol

I tried to get him to test IGF-1,DHEA-S & DHT but they where a no go..could almost see him adding up the cost of the tests as I asked for them..tried to explain how useful IGF-1 is in determining HCG levels & pituitary status,that it's necessary to have a DHT baseline level before starting Testosterone replacement..I think the tests he did agree

to should give a good indication as to whats happening..hope so anyway.

also have you done Hertoghe's questionnaire? thyroid treatment/files/MEDICAL%20QUESTIONNAIRES/Hormone%20Questionnaire.Dr%20Thierry%20Hertoghe.xls

(it was in a diff place but looks like it's been moved to here now) that shoudl give an indication what else you may be low in. the questions are pretty accurate: i quizzed low in GH and preg and Testosterone, and indeed tests confirm i'm low in all 3.

Thanks for the link to Hertoghe's questionnaire,interesting..just filled it out..I tested lowest on the following...

TESTOSTERONE - shows low T as my biggest problem

GROWTH HORMONE - reveals low levels of GH only a few points behind T

THYROID HORMONES

DHEA - Strange..I have never been able to tolerate DHEA,it always leave me feeling wired...DHEA,Pregnenalone & Progesterone showed almost the same deficiency level as Thyroid Hormones

PREGNENALONE

PROGESTERONE

MELATONIN - Middling deficiency.. I have never been able to tolerate melatonin in even the tiniest doses,leaves me comatose the following day

so surprised this came up pretty low.

The rest of the scores are pretty good..around 4-10...surprisingly CORTISOL only scored a 6 yet my adrenal stress profile from last October

showed me well below range throughout the day..kind of confirms for me my decision to wean off HC.I'm curious what you did to correct your GH,Preg,Testosterone deficiencies..did you manage to find a specialist to prescribe GH & T or do you self treat?..preg is readily available but GH & T are pretty much script only.I also think I need off HC,I have noticed no improvements in any low cortisol symptoms at doses up to 35mg,I'm on 27.5mg at the moment..what I have noticed since starting HC last October is the four extra inches of bloated fat around my waistline..I have always been a 32in waist,now thanks to HC it's 36in..I think it's time to stop thyroid meds again,wean off HC & reassess everything from scratch.perhaps you're taking too much? could it be that if you 've been low on cortisol for a long time your receptors are extra sensitive and a little goes a long way? it is also argued that that the dose your taking is greater than physiological replacement http://jama.ama-assn.org/content/281/20/1887.extract . do you know what your CBG levels were too? and were you able to get a 24 hr urinary free cortisol test to see what the daily production was? i've heard that -people with low saliva cortsiol can have normal urinary free cortisol over the coruse of a day as it's used up fast. whether that's true or not i don't know. Baschetti has some good info on cortisol and licorice which may apparently help CFS, tho if u use licorice i think it drops your Testosterone lower http://www.newtreatments.org/fromweb/licoriceconversation.txt So many conflicting opinions as to what constitutes a physiological dose..most of the CFS studies use quite low doses,around 10-15mg a day,others believe that low a dose will suppress not support so you'll be worse off ,others say anything up to 40mg is a physiological dose..in hindsight I wish I had not started on HC,I believe HC on it's own is probably too suppressive of the entire adrenal hormone cascade leading to further unforeseen problems.Once I've weaned off HC I'll ask my GP test my adrenal function,24hr urine & possibly synacthen.I haven't had a CBG (Corticosteroid Binding Globulin deficiency)..I'll keep it in mind next time I see my GP..I hadn't heard of this problem before so thanks for the heads up.I tried licorice before starting HC..most natural adrenal support supps either leave me tired or wired..licorice knocked me out & gave me a headache even in very small doses.I have also discovered that my Total Testosterone level of 12.7nmol/L is very low for a 45 year old guy,in fact my level is the average for a 80-100 year old man..my GP says it's in range so is perfectly normal..AAAAARGH!..I managed to convince him to order more sex hormone tests,I'm sure low T is a major cause of a lot of my symptoms..I believe oestrogen dominance can also cause thyroid cellular uptake problems,I certainly have a few symptoms that could be related to high oestrogen,maybe that's why I cannot tolerate NDT..GP agreed to test my estradiol levels so perhaps I'll have a few answers next week...starting to think I have a lot more hormonal issues than just adrenals & thyroid.can you get checks on progesterone and pregnenolone? Progesterone balances estrogen, apparently. http://www.hertoghe.eu/nl/samenvattigen/abstr/progesterone-therapy-in-men-crucial-for-men-over-40/I'll try to get preg & prog tested in future...a lot of the guys at http://www.musclechatroom.com/forum/forumdisplay.php?2-All-Things-Male use preg & prog..progesterone in particular is reported to help balance estrogen levels in men & women.Nick at Androids is very helpful (google that, i'm at work so i can't!) and can maybe point you in the right direction with testosterone issues, and there's a hypogonadism group for testosterone that might help ( i think)I discovered http://www.androids.org.uk/ a couple of weeks ago,excellent site..I joined / a few weeks ago,phil the mod there is very helpful,he has a wealth of knowledge & experience & comes across as a really nice guy.Curious what you think of my GP's response to my low ferritin of 33..he said it wasn't a problem & that I should not take iron as my HB,RBC, & haematocrit where all top of range & my blood was actually quite thick..I know there are many causes of thick blood,hypo being one of them..so I'm not convinced that a 33 ferritin shouldn't be raised..your thoughts.Anyways..back to trying to sort out the not so wonderful puzzle of my hormones...Thanks for your time & help...~Andy~

[Guest guest]

That is exactly why I phased out the hydrocortisone. I just kept putting on

weight, particularly on my stomach and at the back of the neck, between the

shoulder blades. Like you, I have decided to have a break from everything and

start again from scratch. I'm going to stop everything for 6 weeks, having a

retest of TSH, Free T3 and Free T4, then start again, maybe with thyroxine this

time as I have never tested whether I am OK on that. I'll be interested to hear

how you get on.

Miriam

>

> I also think I need off HC,I have noticed no improvements in any low cortisol

symptoms at doses up to 35mg,I'm on 27.5mg at the moment..what I have noticed

since starting HC last October is the four extra inches of bloated fat around my

waistline..I have always been a 32in waist,now thanks to HC it's 36in..I think

it's time to stop thyroid meds again,wean off HC & reassess everything from

scratch.

[Guest guest]

Hi Andy

have you also asked your gp to do ACTH and cortisol and CBG (or free cortisol?)

? With CBG I wasn't thinking of deficiency, since CBG binds cortisol making it

unavailable doesn't it. so i was thinking you might have normal blood levels

of cortisol when tested, but high CBG (i have high CBG), giving you low free

cortisol levels. or low CBG, giving you higher free cortisol levels?

have you considered reading T Hertoghe's book? it's very informative... maybe

your local library has it or you can borrow it from the TPA libary? (it's on

amazon too, of course, but i'm thinking of the money if you're not able to work

:-( ) you can 'look inside' on Amazon usa, and they have used copies for 10

cents, maybe possible for you to buy it cheaper there than off amazon uk:

http://www.amazon.com/Hormone-Solution-Younger-Nutrition-Therapies/dp/1400080851\

/ref=sr_1_1?ie=UTF8 & qid=1303483290 & sr=8-1

Hertoghe has this to say about 24 hr urinary thyroid test

" In a twenty-four hour urine analysis, watch out for low levels of

tri-iodothyronine (under 1,500 pmol/24h) and/or thyroxine (under 1,800pmol/24h) "

> Thanks for the link to Hertoghe's questionnaire,interesting..just filled

> it out..I tested lowest on the following...

>

> TESTOSTERONE - shows low T as my biggest problem

>

> GROWTH HORMONE - reveals low levels of GH only a few points behind T

>

> THYROID HORMONES

>

> DHEA - Strange..I have never been able to tolerate DHEA,it always

> leave me feeling wired...DHEA,Pregnenalone & Progesterone showed almost

> the same deficiency level as Thyroid Hormones

> PREGNENALONE

>

> PROGESTERONE

>

> MELATONIN - Middling deficiency.. I have never been able to tolerate

> melatonin in even the tiniest doses,leaves me comatose the following day

> so surprised this came up pretty low.

Curious as to what dose of DHEA you took?

i guess if you are hypopituitary, you would be low on pretty much all the

hormones?

> The rest of the scores are pretty good..around 4-10...surprisingly

> CORTISOL only scored a 6 yet my adrenal stress profile from last October

> showed me well below range throughout the day..kind of confirms for me

> my decision to wean off HC.

interesting...i did read though that it's good to get a urinary free cortisol 24

h to see what else is going on ie how much do you produce over the course of the

day? i read once that saliva cortisol can be low if you are using up the

cortisol quickly.

> I'm curious what you did to correct your GH,Preg,Testosterone

> deficiencies..did you manage to find a specialist to prescribe GH & T or

> do you self treat?..preg is readily available but GH & T are pretty much

> script only.

well i wouldn't self treat with GH-so not on that at moment. i'm not doing

anything about preg right now. T - i'm on jabs from the dr, but trying to get

gels, etc since the jabs can send me too high on T then wear off in between. I

have given up on NHS for everything but T, and will be persuing the other

deficiencies with another doctor...

> So many conflicting opinions as to what constitutes a physiological

> dose..most of the CFS studies use quite low doses,around 10-15mg a

> day,others believe that low a dose will suppress not support so you'll

> be worse off ,others say anything up to 40mg is a physiological dose..in

> hindsight I wish I had not started on HC,I believe HC on it's own is

> probably too suppressive of the entire adrenal hormone cascade leading

> to further unforeseen problems.

true yes, there is much conflicting info. if the dr's can't agree, what hope

have we got?

http://jcem.endojournals.org/cgi/content/full/94/11/4216#R17

In recent years, it has been reported that the cortisol production rate in

normal subjects is less than was previously thought [Esteban et al. (15), normal

cortisol production rate in young adults, 27.3 µmol/d (equivalent to 5.7 mg/m2/d

or approximately 9.9 mg/d); and Kerrigan et al. (16), total daily cortisol

production rate, 5.7 ± 0.3 mg/m2/d]. Traditionally, the daily dose of

hydrocortisone was 30 mg/d, split into two doses (frequently, two thirds in the

morning and one third in the evening); given the recent discovery of lower

levels of cortisol production rates, this would lead to levels that were

supraphysiological. Indeed, in the study by Esteban et al. (15), patients with

Cushing's syndrome had daily cortisol production rates of 30.7 ± 9.3 mg/d. The

bioavailability of orally administered hydrocortisone is approximately 95% (41,

42); therefore, 30 mg of hydrocortisone per day could achieve levels similar to

those seen in patients with Cushing's syndrome, albeit with greater peaks and

troughs, because the half-life of orally administered cortisol is only 90 min

(43). A single morning dose of 15 mg hydrocortisone leads to supraphysiological

serum cortisol concentrations 1–2 h after oral administration and a return to

subphysiological or undetectable levels 6–8 h later (44, 45). Glucocorticoid

replacement dose has effects on a number of clinical parameters including bone

metabolism, glucose metabolism, cardiovascular function, and quality of life

(46).

> Once I've weaned off HC I'll ask my GP test my adrenal function,24hr

> urine & possibly synacthen.

i would also ask for a 24 hr urinary free cortisol test and baseline ACTH and

cortisol and CBG as above. you want to see how much cortisol is produced over

the course of day.

> Curious what you think of my GP's response to my low ferritin of 33..he

> said it wasn't a problem & that I should not take iron as my HB,RBC, &

> haematocrit where all top of range & my blood was actually quite

> thick..I know there are many causes of thick blood,hypo being one of

> them..so I'm not convinced that a 33 ferritin shouldn't be raised..your

> thoughts.

hmm i'm no expert on ferritin, i know little about it, very little! i saw an

endo last year who was good, he said my ferritin should be 150: at the time, it

was 115. make of that what you will! now, i'ts much lower, and dropping. i

have no idea why. i wouldn't take gp's word on this, i'd reserach it and see

what you come up with. i've googled this and some drs think yes it should be

150, others say no, that's too high.

> Anyways..back to trying to sort out the not so wonderful puzzle of my

> hormones...

i've given up trying to sort it myself, it's so complicated, and i've spent way

too long on it. the more i read, the less i know....

let us know how you get on

chris

[Guest guest]

Hi Chris...have you also asked your gp to do ACTH and cortisol and CBG (or free cortisol?) ? With CBG I wasn't thinking of deficiency, since CBG binds cortisol making it unavailable doesn't it. so i was thinking you might have normal blood levels of cortisol when tested, but high CBG (i have high CBG), giving you low free cortisol levels. or low CBG, giving you higher free cortisol levels.No..not yet,once I'm off HC for a few weeks I'll look into ithave you considered reading T Hertoghe's book? it's very informative... maybe your local library has it or you can borrow it from the TPA libary? (it's on amazon too, of course, but i'm thinking of the money if you're not able to work :-( ) you can 'look inside' on Amazon usa, and they have used copies for 10 cents, maybe possible for you to buy it cheaper there than off amazon uk: Yep already got it:) picked up a copy last week from Amazon UK,they had the price reduced for a couple of days so snapped it up..I'm reading The Testosterone Syndrome by Eugene Shippen at the moment so only browsed Hertoghe's book,looks a very interesting read.Hertoghe has this to say about 24 hr urinary thyroid test"In a twenty-four hour urine analysis, watch out for low levels of tri-iodothyronine (under 1,500 pmol/24h) and/or thyroxine (under 1,800pmol/24h)"I actually spotted this in Hertoghe's book the day I received it..I quoted the above to my GP when I saw him last Tues,he looked at my Genova 24hr urine T3 T4 test results & said they where fine,that my T3 & T4 where all in range..AAAARGH!..my Urine T3 was 787 & T4 859.Curious as to what dose of DHEA you took? i guess if you are hypopituitary, you would be low on pretty much all the hormones? First time I tried DHEA was about 10 years ago..25mg daily,initial impression was good..more energy,clearer head,I even looked better facially,not so tired..after a few days I felt increasingly wired & spacey..had to stop.Tried again a few years later at a much lower doses of 5mg then 2.5mg & eventually even as low as 1.25mg,it had the same effect,wired & spacey..possibly relates to DHEA's effect on cortisol,personally I think the DHEA converted to estrogen in my body..I'm pretty certain I'm estrogen dominant.well i wouldn't self treat with GH-so not on that at moment. i'm not doing anything about preg right now. T - i'm on jabs from the dr, but trying to get gels, etc since the jabs can send me too high on T then wear off in between. I have given up on NHS for everything but T, and will be persuing the other deficiencies with another doctor...How's your doctor spacing your shots,perhaps they're too far apart..I think it's still standard practice in the UK for fortnightly T shots,a real hormonal roller coaster ride:(..,searching various forums it seems most guys on injectable T take their shots weekly or even twice weekly..Gels have convenience on there side but from my research they can also raise DHT far higher than shots.Curious how low where your T levels before your doc started you on TRT?I started using Transdermal Pregnenolone last week to help wean HC..I use Biovea TD Preg,one pump=20mg pregnenolone..I use one pump one hour after morning HC & one pump after mid day HC..as it's transdermal it absorbs slowly releasing preg over a number of hours,really smooths out emotions..I reduced HC from 27.5mg to 22.5 a few days ago,the TD preg really seems to help,my energy has increased,I feel more relaxed & brain fog has lessened,so pretty positive so far..as I reduce HC I'll increase the preg.hmm i'm no expert on ferritin, i know little about it, very little! i saw an endo last year who was good, he said my ferritin should be 150: at the time, it was 115. make of that what you will! now, i'ts much lower, and dropping. i have no idea why. i wouldn't take gp's word on this, i'd reserach it and see what you come up with. i've googled this and some drs think yes it should be 150, others say no, that's too high.I told my GP that my 33 ferritin is way to low for a guy,as you say 100-150 is the most often quoted optimum level for a guy..my docs opinion was that as my HB,RBC & haematocrit where all top of range my blood was quite thick so I needn't take iron even with very low ferritin..of course there are many reasons for thick blood,hypothyroid being one of them..I'll have to twist his arm for a full iron panel next time I see him.let us know how you get onWill do:)All the best..~Andy~

[Guest guest]

Hi Andy

I missed this one

re: DHEA ;

> Tried again a few years later at a much lower doses of 5mg then 2.5mg &

> eventually even as low as 1.25mg,it had the same effect,wired &

> spacey..possibly relates to DHEA's effect on cortisol,personally I think

> the DHEA converted to estrogen in my body..I'm pretty certain I'm

> estrogen dominant.

Could be right about the cortisol thing, i wouldn't know about the estrogen

thing tho. perhaps cortisol lowered testosterone more in you and that's why you

put more weight on?

re: testo jabs:

> How's your doctor spacing your shots,perhaps they're too far apart..I

> think it's still standard practice in the UK for fortnightly T shots,a

> real hormonal roller coaster ride:(..,searching various forums it seems

> most guys on injectable T take their shots weekly or even twice

> weekly..Gels have convenience on there side but from my research they

> can also raise DHT far higher than shots.

sustanon 250 every 21 days; after about 14 days, i need another. its a roller

coaster. newer medication is 'nebido', a jab every 3 months.

> Curious how low where your T levels before your doc started you on TRT?

as low as 9, in fact 7.9 in the afternoon at one point. how i got the jabs is a

long story. bit of a struggle, was lied to when lab reports said 'subnormal,

retest' etc etc. a year later i found that out. i went and saw a good endo who

knew my results were too low for my age, and he wanted further tests done by gp,

but she wouldn't do it. saw an nhs endo who said no i can't help. saw a

different private endo who was not nice to say the least but offered jabs as a

boost, and then contacted a urologist who said yeah with my symptoms and levels

of T i should alsmost certainly be on T. sometimes if you contact a urologist

or endo in email and say look these are my results, this is how i feel, could

this possibly be affecting me, would you see me or consider treating me at these

levels then if they reply and the replies good you can use that to get a

referral. urologists may - depending on what your symptoms are help you more.

> I started using Transdermal Pregnenolone last week to help wean HC..

how about progesterone or are you already on that?

chris