Re: Desperately sticky situation and how to respond re T3 and multi-disciplinary mtg

[Guest guest]

Dear Jacqui

How far and what compass direction are you from Chelsea and Westminster?

Best wishes

Bob

>

> Hi all

> I have not been on the forum for quite some time as I have been

without

> internet communication since well before Christmas. I also was feeling

> much improved healthwise and preoccupied with dealing with urgent

> matters which I had been unable to attend to previously, due to ill

> health.

[Guest guest]

Dear Bob

I live in Chislehurst, near Bromley. My nearest station is a 20min walk to

Elmstead Woods Station (or a short bus ride). It takes about an hour and a half

to get to Chelsea and Westminster - the same time it takes to get to Princess

Royal University Hospital which is in Farnborough, where my last endo was

situated. The appointments at Chelsea and Westminster are usually before 11am

and so I do not always get a seat on the train (rush hour), which is fine when

fully supplemented with T3 but torturous when not.

Love

Jacquie

>

>

> Dear Jacqui

>

> How far and what compass direction are you from Chelsea and Westminster?

>

> Best wishes

>

> Bob

>

>

[Guest guest]

Dear Jacqui

I wonder if there is anyone near you who might be able to help with a component

of your journey ?

best wishes

Bob

>

> Dear Bob

>

> I live in Chislehurst, near Bromley. My nearest station is a 20min walk to

Elmstead Woods Station (or a short bus ride).

[Guest guest]

Dear Bob

I am afraid there isn't and I don't have any family to turn to. I do not find

the journey difficult as long as I am on my current dose but the effects when

lowering the dose makes it difficult for me to even get to my bathroom, as the

muscle weakness becomes debilitating. My muscle weakness improves tenfold when

on my current dose of 150mcg T3.

Love

Jacquie

> >

> > Dear Bob

> >

> > I live in Chislehurst, near Bromley. My nearest station is a 20min walk to

Elmstead Woods Station (or a short bus ride).

>

[Guest guest]

Were you ok on 150mcg t3? If so, can you not just go back up to this dose and

buy it for yourself?

chris

>

> Hi all

> I have not been on the forum for quite some time as I have been without

[Guest guest]

Hi Chris

That is what I was doing and have returned to doing, but this has drained my

finances and I am afraid of losing my home.

I am also still not 100% to be able to go back to work to be able to fund such a

high dose for the rest of my life which is my main concern. I worked for many

years in a extremely stressful job with long hours including weekends, and have

paid my National Insurance, taxes, etc until becoming too ill to work. Despite

this, I have not been investigated for any further issues or why I would need

such a high dose of T3 to function. I've had two 24hr urine steroid profiles

done a year ago and both feature Cushing's, which my endo has, and yet no

investigations into these high cortisol levels have ever been made. I also

wrote to Dr Peatfield but he thought my high cortisol may be down to temporary

stress. I would expect the NHS to fund the medication which is making me

function considering that I have paid into the system and am willing to sign any

waiver or whatever it takes so that my endo is not responsible.

Unfortunately, it is not that simple. The bottom line is, I a cannot afford to

fund my own medication for the rest of my life without earning a salary that I

was used to. I have gone through all my savings due to this dreadful disease

and being left undiagnosed adn bedridden for so many years, so i am in dire

straights now and that's why I am asking for advice on how to proceed as I wish

to remain with Dr S, but with the multi-disciplinary Biochemical.. having made

the decision on his behalf, how do I tell him that I will not, and cannot

decrease my dose and would still wish him to do whatever tests necessary whilst

I am on my current dose to get to the route of the problem of why I need so much

T3 and why I am still not 100%, without getting him into trouble.

Love

Jacquie

> >

> > Hi all

> > I have not been on the forum for quite some time as I have been without

>

[Guest guest]

Hi Jacquie

My goodness, I would go mad at this - your tests indicate cushing's and they

don't investigate? That's surely negligence?

Have they given you any explanation at all for the high urinary cortisol? or

are they blaming it on the t3?

are you sure this endo is any good if he dismisses 2 high urinary cortisol

tests?

>having made the decision on his behalf, how do I tell him that I will not, and

cannot decrease my dose and would still wish him to do whatever tests necessary

whilst I am on my current dose to get to the route of the problem of why I need

so much T3 and why I am still not 100%, without getting him into trouble.

Can you go along with it for now but insist on the relevant blood tests? (then

take the meds anyway?). Are you referring to the blood tests like iron, vitamin

D, copper and so on?

For about 400 pounds you can get extensive testing done in belgium that'd reveal

any problems. is this out of the question for you? (sorry if that sounds

insensitive, i appreciate all you've said in your post about savings and so on)

i would also push very strongly for investigation into these urinary cortisol

tests. maybe high cortisol is pushing you to need a lot of t3? I read that

high cortisol increases rt3 - has this been considered that cushings is your

problem?

Chris

[Guest guest]

Hi Jacquie, did you receive me message of yesterday when I

mentioned Cushing's symptoms, pituitary adenoma symptoms and adrenal adenoma

symptoms? Have you checked these out because any of these could be an

explanation of why your test results are showing very low levels of free T3,

after taking such a high dose of T3 for so long. In case you didn't get it,

here it is again.

I think you are going to have to take the bull by the horns and demand

that your endocrinologist arranges the appropriate ACTH and Synacthen tests

without further delay. If he has already agreed that your results feature Cushing's,

then an early diagnosis is needed.

If this was me Jacquie, I would write to Dr S and give him the

facts. Please remember that doctors and patients MUST work together and doctors

have to listen to their patients and take into account what they are saying.

This is a two way process.

Tell him that you have tried to reduce the T3, but with it comes

the return of all your previous symptoms and you cannot cope. I would also tell

him that nobody has ever looked into the possibility of a pituitary or adrenal

adenoma or into the possibility of Cushing's Syndrome. I would check out the

symptoms and signs of Cushing's and make a list of which one's (if any) you are

suffering and send that list to him too and ask him, that before anything else

is looked into (yes, even the lowering of your T3) that the possibility of any

of these being a cause may need to be checked.

Cushing's Symptoms and Signs: http://www.nhs.uk/Conditions/Cushings-syndrome/Pages/Symptoms.aspx

Pituitary Adenoma Symptoms and Signs: http://endocrine-system.emedtv.com/pituitary-tumor/pituitary-tumor-symptoms.htmlAdrenal

Adrenal Adenoma Symptom and Signs: http://www.answers.com/topic/adrenal-tumors

Luv - Sheila

I am also still not 100% to be able to go back to work to be able to fund such

a high dose for the rest of my life which is my main concern. I worked for many

years in a extremely stressful job with long hours including weekends, and have

paid my National Insurance, taxes, etc until becoming too ill to work. Despite

this, I have not been investigated for any further issues or why I would need

such a high dose of T3 to function. I've had two 24hr urine steroid profiles

done a year ago and both feature Cushing's, which my endo has, and yet no

investigations into these high cortisol levels have ever been made. I also wrote

to Dr Peatfield but he thought my high cortisol may be down to temporary

stress. I would expect the NHS to fund the medication which is making me

function considering that I have paid into the system and am willing to sign

any waiver or whatever it takes so that my endo is not responsible.

[Guest guest]

Hi ChrisMy 24hr urinary CORTISOL tests came back normal but both my 24hr urinary STEROID profiles came back showing high cortisol metabolites and the laboratory commented that the second was the same as the first and also featured Cushings. Because my 24hr urinary CORTISOL tests were normal they will not follow up on the 24hr urinary STEROID profile's results. This is the only reason I can think of.No they are not blaming it on the T3 as I had these tests when on T4 a year ago. if you read my email to my endo at the beginning and right at the bottom of the first page, you will see that I did go along with it and decreased my 150 T3 to 100mcg and became bedridden, in pain and unable to function. He has responded and it is to his response which I am battling to respond to as I have gone against his superior's wishes to wean me off T3 so that my TSH is in the middle of the reference range.I have had all vitamin and mineral tests except copper which no one will test, and also iron sat % and am waiting for the results. I supplement anyway... this is in my email to him below, which has made a huge difference, esp D3 and magnesium and Vit C. I cannot afford to pay my bills never mind fork out £400+ to go to Belgium as much as I wish I could. Would you read my endo's response to my email which I have recopied and pasted below? Thanks so much Chris._________________25.1.12Thank you for your recent e-mailI will post a copy of the tests here as requestedregarding the change in symptoms you mention and the role of TSH and free T3 as markers of this:Free T4 was the blood test we mentioned that would be done automatically when thyroid function is tested which is the level that was not needed in view of the T3 therapy that you are taking, TSh does have a role in this and is the brians response to circulating and intracellular F4 and T3 levels, the blood brain barrier allows certain hormone across and these levels enter the cells in the pituitary which then secretes TSh in response to that, so using TSH as a morker of this is a valid test. [i'm confused?] As discussed we would aim to have a TSh detectable and ideally with in the lower half of the normal reference range as most data suggests that complete suppression of TSh is not ideal and may be associated with side effects form thyroid hormone replacement therapy.We do therefore need to try and reduce your total T3 dose, i note s commnt that you are on a high dose of T3 and his other comments regarding intracellular signalling and pathway changes. Overall howveer there is a limnit for how much risk we can run by over ttreating and your recent blood test ssuggest that is where we are running things, or more toward sthat than i am comfortable withWe have discussed your case and the recent e-mail with the references and data you mention in this e-mail at out Multi-Disciplinary Endcorinology and Biochemistry meeting here earlier this week and the consensus from that would agree that we are over doing the T3 replacement slightkly based on your recent blood etsts and need to try and weean this down, if the symptoms are worse with the canges we made to date we can do this weaning down a little more slowly, but our aim should eb to rerduce this as much as we can to reduce the risk to you from this replacwe3emnt regimen as well as getting the symptoms as well controllede as we can [how is this possible without making me severely ill?]i will drop a note to your GP regarding the T3 trherapy and prescriptions and if you decide that coming to see us here at Chelsea and Westminsetr is too dificult i am happy for them to refer you to a duifferent specialist team and if so let me know who and wheer and i will forward them copies of all relevant information they would need to help speed that up.Regarding the other test and options, i will send forms and details through to you once your notes come throught to me re what we can do regarding these, as for referrals through to different in house teams, unfortuantely our Trust and local PCT do not allow tertiary referrals for anything unless your GP agrees and arranges that, politics i am afraid,I will drop a note to GP and post out results as requested ----------------------------------------And this is an except from my email to him:" have read and heard that high cortisol levels affect absorption of thyroid hormone in the cells. I doubt the results of the 24hr Urine Steroid Profiles which were done previously have changed much but if you could test me further I would be eternally grateful. I feel that long term stress on my adrenals may also have something to do with me not getting well and I would be grateful to have this investigated. The slightest pressure, stress, bad news, altercations, wrongdoings, etc endured, sends me over the edge for weeks/months and I find it difficult to recover and an extraordinary fear sets in. My body and brain seize functioning and I feel I cannot deal with people so I shut myself off. There is also the question of my gut and if there is something wrong there which is preventing my T3 from working properly. I would be grateful if you could help with getting this investigated also as my GPs will not do so unless I have a referral."LoveJacquie>> Hi Jacquie> > My goodness, I would go mad at this - your tests indicate cushing's and they don't investigate? That's surely negligence? > > > Have they given you any explanation at all for the high urinary cortisol? or are they blaming it on the t3?> > > are you sure this endo is any good if he dismisses 2 high urinary cortisol tests?> >> i would also push very strongly for investigation into these urinary cortisol tests. maybe high cortisol is pushing you to need a lot of t3? I read that high cortisol increases rt3 - has this been considered that cushings is your problem?> > > Chris>

[Guest guest]

Sorry Jaquie I will re- read this and see if there is anything i can think of

(probably not but i will try)

chris

>

[Guest guest]

Yes, Sheila, I did and also responded to you yesterday but I know how busy you

are.

No doctor will take these reports seriously and they believe I have a problem by

pushing for further tests. In fact, I have been labelled a Hypochodrasis, which

is now in my medical notes, because I was pushing for the possibility of

Cushing's to be tested. I have also requested a pituitary test which they took

blood for and am waiting for the results (or they could be in the letters I sent

to you from Dr S).

My response to you is below:

" Sheila, I have already explained the harm the 100mcg had caused me. It is the

very first (and lengthy) email at the bottom of the page. You would have to

scroll all the way down. I said much because I was so ill and it took three

days to write because my brain couldn't function. He took my email to a

Multi-Disciplinary Endocrinology and Biochemistry meeting and they decided to

wean me off T3. It seems it was not his decision which is why I am in a

quandary! I have copied an excerpt of his email below:

" We have discussed your case and the recent e-mail with the references and data

you mention in this e-mail at out Multi-Disciplinary Endcorinology and

Biochemistry meeting here earlier this week and the consensus from that would

agree that we are over doing the T3 replacement slightkly based on your recent

blood etsts and need to try and weean this down, if the symptoms are worse with

the canges we made to date we can do this weaning down a little more slowly, but

our aim should eb to rerduce this as much as we can to reduce the risk to you

from this replacwe3emnt regimen as well as getting the symptoms as well

controllede as we can "

Love

Jacquie

>

> Hi Jacquie, did you receive me message of yesterday when I mentioned

> Cushing's symptoms, pituitary adenoma symptoms and adrenal adenoma symptoms?

> Have you checked these out because any of these could be an explanation of

[Guest guest]

Hi Jacquie, yes, I have read all of the correspondence and noted

what actions have been taken. I was just wanting to know whether you had

checked through the links I sent to the three conditions that might be causing

your very low T3 result after taking such a high dose. You need to let us know

what symptoms you are actually suffering after checking yours against those in

the links for Cushing's, Adrenal Adenoma and Pituitary Adenoma. We just cannot

go on blood/urine/saliva tests results alone.

What I don't understand is what results the Multi-Disciplinary

Board were referring to when they state it was decided to try to wean your dose

of T3 down based on recent blood tests. Your free T3 results have been very low

throughout.

Sheila

" We have discussed your case and the recent e-mail with the references and

data you mention in this e-mail at out Multi-Disciplinary Endcorinology and

Biochemistry meeting here earlier this week and the consensus from that would

agree that we are over doing the T3 replacement slightkly based on your recent

blood etsts and need to try and weean this down, if the symptoms are worse with

the canges we made to date we can do this weaning down a little more slowly,

but our aim should eb to rerduce this as much as we can to reduce the risk to

you from this replacwe3emnt regimen as well as getting the symptoms as well

controllede as we can "

[Guest guest]

On Fri, 27 Jan 2012 14:12:16 -0000, you wrote:

> I would expect the NHS to fund the medication which is making me function

considering that I have paid into the system and am willing to sign any waiver

or whatever it takes so that my endo is not responsible.

Suggestion as an interim step to save money while continuing the

fight.

Get them to prescribe the 100 of T3 they think you ought to be on,

that gives you 2/3 of what's needed.

Buy Mexican to top up with, you will need an extra 50mcg a day which

comes out at about 30p a day by my sums.

Lower dose for a few days before you do labs so the labs look more

like they expect.

Not ideal, better than nothing and doable as a stop gap while

fighting.

Nick

[Guest guest]

Jacquie,

I printed out this whole thread and read through it. I am sorry you're

suffering so much.

I need to ask:

>My 24hr urinary CORTISOL tests came back normal but both my 24hr urinary

STEROID profiles came back showing high cortisol metabolites and the laboratory

commented that the second was the same as the first and also featured Cushings.

Which metabolites were showing high, do you have the results please?

Chris

[Guest guest]

Hi ChrisThank you for doing that! I only have the second report in a table which I shall paste below. The first report was higher! (I can't attach here as they have personal info plus Dr name etc)Jacquie

24

HOUR URINE STEROID HORMONE PROFILE

Steroid (ug/24)

Patient

Mean

Std. dev.

Androsterone

706

770

420

Aetiocholanolone

1016

937

621

DHA

46

327

244

11 –Oxo-aetiocholanolone

138

322

144

11 β-OH Androsterone

309

527

226

11 β-OH Aetiocholanolone

92

333

156

16α-Hydroxy DHA

8

Pregnanediol

1750

858

787

Pregnanetriol

1999

445

223

Androstenetriol

187

294

234

Tetrahydrocortisone

5524

1941

783

Tetrahydro-11-dehydrocorticoserone

188

223

93

Tetrahydrocorticosterone

350

167

96

allo- Tetrahydrocorticosterone

190

212

105

Tetrahydrocortisol

1823

878

314

allo- Tetrahydrocortisol

198

502

208

α-Cortolone

2239

675

267

β -Cortolone + β –Cortol

613

548

276

α –Cortol

311

208

68

Androsterone +aetiocholanolone

1722

1707

1001

Total cortisol metabolites

10708

4752

1693

Comment:

Creatinine excretion calculates to 8.4 mmol/24hr. This is

less than for the 'incomplete' collection of 13.02.11 (8.8mmol/24hr). Steroid

levels are lower than before: expressed as ug/mmol creatinine, cortisol metabolites

are 1274 (previously 1519). The profile is otherwise similar to before, with

the same single feature of Cushing's, an increase of 5B - relative to

5a-reduced steroids.

>> Jacquie,> > I printed out this whole thread and read through it. I am sorry you're suffering so much.> > I need to ask:> > >My 24hr urinary CORTISOL tests came back normal but both my 24hr urinary STEROID profiles came back showing high cortisol metabolites and the laboratory commented that the second was the same as the first and also featured Cushings.> > Which metabolites were showing high, do you have the results please?> > Chris>

[Guest guest]

Hi Nick,

I have thought of that but the NHS T3 is weaker and mixing the Cynomel with NHS

makes me feel ill. The NHS T3 is also weaker and difficult to divide (it turns

into powder when cutting) so I cannot get the correct dose using this method. I

take 37.5 T3 at 4.15am, 9.15am, 1.30pm and 12.5 at 5 and then again at lights

out. It took ages to get to this dose to make me feel more energised and I did

that with Cynomel. It would take ages for my body to get used to the NHS T3 and

then I would have to worked out what would work best for me as it is definitely

not as strong.

The other problem is that I had stopped my T3 for one week before my first visit

to my Endo and my TSH did not drop (they are not interested in where my fT3 is).

His superiors want to wean me off T3 to raise my TSH because they say that it

should be in the middle of the reference range and NOT suppressed! The TSH

would take months to get to where they want it and I just won't make it!

Jacquie

>

> > I would expect the NHS to fund the medication which is making me function

considering that I have paid into the system and am willing to sign any waiver

or whatever it takes so that my endo is not responsible.

>

[Guest guest]

Thanks

Were you checked for congenital adrenal hyperplasia? Do any of the symptoms

for this fit?

http://www.dundee.ac.uk/medther/tayendoweb/congenital_adrenal_hyperplasia.htm#Ho\

w%20is%20adult%20onset%20CAH%20diagnosed%20in%20women?

Chris

[Guest guest]

Jacquie,

Have you tried the LA Pharma T3, it comes in 100mcg tablets (100 tablets in a

tub i gather, for about 20 pounds), so i'm thinking it may be a bit cheaper for

you.

chris

[Guest guest]

i should add i've seen the price vary between 20 and 45 pounds

i appreciate this doesn't help your predicament with the endo

chris

>

> Jacquie,

>

> Have you tried the LA Pharma T3, it comes in 100mcg tablets (100 tablets in a

tub i gather, for about 20 pounds), so i'm thinking it may be a bit cheaper for

you.

>

> chris

>

[Guest guest]

Thanks for trying, and no, it still doesn't resolve the issue on how to

respond to his email.

My system has gotten used to the Mexican Cynomel which seems cheaper, and it

would take months to adjust to another brand. I didn't fair well with the NHS

brand although I didn't have any major side effects. It could also have been

the low dose and the fact it is weaker.

They didn't take any of this into consideration either... their ignorance is

appalling!

Jacquie

>

> i should add i've seen the price vary between 20 and 45 pounds

>

> i appreciate this doesn't help your predicament with the endo

>

> chris

[Ed]

[Guest guest]

> I cannot afford to pay my bills never mind fork out £400+ to

> go to Belgium as much as I wish I could.

> Would you read my endo's response to my email which I have recopied and

I hope you didn't think i was being insensitive there, just suggesting getting

these tests done just like that as if the money was nothing. I am not rich

either. Before I got ill I had nearly a good amount of savings in the bank,

then couldn't work for a year, all my money went, i dragged myself back to work

and slowly managed to get things sorted a bit at a time and in the end i had to

take out a small loan last year to pay to get proper treatment and am still in

debt now. I have even gone bankrupt before - i only point out these things to

illustrate that i can understand your plight and that i know it's not easy.

By the way, the tests would be done in this country - you just get the blood

taken here and it gets sent back to Belgium as a precursor to an appointment at

the hertoghe clinic. i was just suggesting it as a possible other way of

finding out what is wrong with you so you can leverage the NHS into treating you

and if you could have got them to treat you'd you'd not need to go to belgium .

The belgian tests are very thorough.

I hope you did not think i was being insensitive or that i'm on a totally

different planet...

chris

[Guest guest]

Of course I didn't, Chris. I posted so much info that I knew you had missed

that part of it.

It would be advice I'd give to anyone who could afford it and was well enough to

make the journey. I would be terrified to make such a journey on my own even if

I did have the money as my last major trip was to South Africa in 2007, to sort

out my late mother's affairs, left me traumatised. I don't know how I made it

back home I was so ill.

Jacquie

>

>

> > I cannot afford to pay my bills never mind fork out £400+ to

[Guest guest]

Okay! This is freaking me out as I don't know which way to turn! I have gone through most of Nick Foot's back posts to see how he went from T3 to NDT and at how much, to get some idea how to change from such a high dose of T3 only. The most I have been on is 5 grains p/d after two weeks.From the beginning:Almost died on 150mcg T4 only. Was on 150mcg Cynomel for a year with symptoms but able to think clearly and was finally just 'getting there', in that I was becoming more positive, stamina had increased and was able to do more.Then my endo prescribed 100mcg NHS T3 and I went on it and my symptoms returned and was bedridden, paranoid and suicidal. I increased it to 150, then 160 and more, but I was having such a reaction to the NHS T3 (which I had never had before but then I was only on a low dose) that I returned to my Mexican Cynomel. BUT the time it took for me to get to that 'goodish' place seemed to have disappeared. I continued to be hypo and suicidal even though I had been previously been getting better on the Mexican Cynomel. Why did this happen????I then received Sheila's note from Dr Thierry Hertoghe to go onto NDT. My correspondence with Sheila is here... thyroid treatment/messages/97812?threaded=1 & m=e & var=1 & tidx=1Here is 's (auto_immune) response to my changing to NDT... thyroid treatment/message/98633So below are my temps, BP, pulse and symptoms (or lack of) from Friday 17 Feb to today, Saturday 4 March (hopefully someone can make some sense of them):Waking Basal Temperature, BP & Pulse / Grains ThiroydFri 17 Feb 35.4C 115/68 (82) 150mcg Cynomel Sat 18 35.9C 97/65 (96) 1/2 grain (felt good)Sun 19 36.0 112/67 (98) 4 grains (felt even better)Mon 20 35.6 119/68 (81) 3 grains (on a roll... almost felt like my old self)Tues 21 36.1 129/67 (88) 2 grains (still feeling great)Wed 22 36.1 124/67 (75) 4 grains (starting to feel v. lethargic)Thurs 23 35.9 111/63 (95) 4 grains (overwhelming deep, dark depression)Fri 24 35.6C 124/70 (97) 6 grains (took 2 extra by mistake - terrible brainfog)Sat 25 36.0 119/67 (95) 4 grains (I think, as I was in a muddle this day!)Sun 26 36.3 113/63 (97) 5 grains (overwhelmingly low mood - crying all day)Mon 27 36.6 117/43 (66) 5 grains (same as above)Tues 28 36.4 120/67 (100) 5 grains (as above and no motivation or stamina)Wed 29 36.2 125/72 (98) 5 grains (depression, brainfog and suicidal thoughts)Thurs 1 Mar 36.3 130/73 (84) 5 grains (face and arms burning up and tingly)Fri 2 36.2C 135/80 (67) 5 grains (all above symptoms and drowsy all day)Sat 3 36.2 106/72 (90) 2 grains and 20mcg NHS T3 (same as above)Sun 4 36.2 109/74 (96) 3 grains so far (normally take 2 grains at lights out)My day time temps have been around 36.2C-36.5C - even dropping to 35.7C on some days.Symptoms: This tingly and burning feeling in my face comes and goes- I can only describe it like a Niacin flush but not as bad. My mood is soooo low that I cannot stop crying (for no reason). I can barely keep my eyes open. Concentration has gone down the pan as has my dexterity. Stamina has decreased. Gritty, blurry eyes/vision. It takes me hours to type a message or think of an answer to a message which is not normal. Agoraphobic, paranoia, anxiety, panic attacks overly emotional, numb and just weird. So difficult leaving my bed due to fatigue although I can't sleep during the day. Positives: Sleep like a log at night and wake up automatically between 7 and 9am, which I was unable to do on T3 AFTER my dose change. Wake up feeling fresh (but then go downhill fast after 10am). Fibro symptoms are rare. Slight increase in libido (had nothing before). I rarely have palpitations and my muscles haven't been affected too adversely... I am able to walk around with relative ease unlike when on T3 (since AFTER my dose was messed up). Don't suffer chest pains or breathlessness as I did when on T3. And the BIGGEST positive of all, is that my sweats have stopped completely - even when I exert myself!!I am constantly aware that I have so much to do and feel I could do it if only my eyelids would stay open and this dark depression is lifted, and my energy and stamina was returned to me. I felt the best in years two days AFTER starting Thiroyd... but this did not last. Why did this happen? What should my next move be?I HAVE to get things done. I urgently need to sort out my finances and HAVE to work in order to live and I know I can achieve this if I can only get myself reasonably better. I can work from home and plan my hours BUT I MUST be able to have stamina, positiveness, be lucid and I need to be able to remember things which I am unable to do now. I cannot even remember if I took my dose or not a few seconds after taking it. I am treading a thin line as I have been ill for too long for me to sustain myself anymore, so any suggestions would be appreciated.My aim is to try and work with my endo so that I get my meds on the NHS! This is why I am trialling the NDT before asking him for it. This is also why I incorporated 20mcg of the NHS T3 into my dose (as a trial but it didn't do anything for me) on the 3rd March, as I really need to get this to work.I am unable to function on 100mcg NHS T3 only (bearing that my endo wants to decrease it to bring my TSH into the bottom of the reference range), so I HAVE to take something else, like NDT... or what? Do I place an order for some more Cynomel whilst there is still a 15% discount (it ends today, I think) whilst I am in this situation, or do I order some more Thiroyd as I only have a little over two weeks left (bearing in mind, that my finances are stretched so I really need to place the right order), or do I try something else? The thing is, I don't seem to be getting on with either!Love Jacquie

[Guest guest]

HI Jacqui,

I don't know all your history (I have read as much as I can) but can I ask -

when your endo prescribed 100mcg T3 were you already on some T3? How did you

start on T3 or increase your dose and how many doses were you taking? And have

you considered trying T3 only?

The only reason I ask is that I have gone from 100mcg T4 with 20mcg and

sometimes 40mcg T3 a day to only 40mcg T3 only and feel much better than when I

was taking the combination (surprisingly so even though overall dose is lower).

I have had to work up very slowly from 20mcg to 40mcg, taken in 3 split doses,

and only after 6 weeks am I now in a position to increase again a little bit,

probably only by 5 or 10mcg a day on one of my doses. I take my first dose 1hr

before I wake up and my temps have stabilised for the first time since diagnosis

on doing this. (I have an under pillow vibrate alarm to wake only me up so I can

take my dose and then go back to sleep)

I do think that sometimes we can be so desperate to find a solution / correct

dose for ourselves so we can get our lives back that we can (with the best of

intentions) mess around with our dosing so much that our poor bodies don't know

if they are coming or going. I am NOT saying that's what you've done, I rather

mean that I know that I myself have been very guilty of that in the past and

have not helped myself to get better as a result. (at one point I was on T4, T3

and NDT at the same time, and taking different amounts each day depending how I

was feeling)

Only by coming off T4 and starting a very low dose of T3 and being very strict

about taking split doses at the same time each day, regardless of how I was

feeling, and being careful about increasing it slowly (only 5 or 10mcg a day,

and then keeping on that for at least a week before increasing again) have I got

myself to the point in a mere 6 weeks where I have wanted to and been able to go

back to travelling to and working in my office 30 minutes drive away once a week

for the first time in over 2 years. And I'm only on 40 mcg a day. That's not

enough, and I do struggle in the afternoons, but I am hoping to get an increase

soon (need to see GP for that) so that I can have energy in the afternoon and

evenings too.

I'm not saying this is the answer to your problems, just wanted to share my

story of personal recovery on T3 only - which was prompted by and wouldn't have

been possible without 's book " Recovering with T3 " . I think the

best bit of advice in the book for me was to go slowly, don't get impatient to

get rid of all hypo symptoms, rather get a clear of T4 (6-8 weeks) and minimize

worst of symptoms only during that time and then work slowly but consistently to

finding your own personal dosing regime that works best for you as everyone is

different.

I do hope that you find a medication and a dosing regime that works for you and

I wish you all the very best in finding your optimum medication and level so

that you can get your life back.

All the best

Nadia

>

>

> From the beginning:

> Almost died on 150mcg T4 only. Was on 150mcg Cynomel for a year with

> symptoms but able to think clearly and was finally just 'getting there',

> in that I was becoming more positive, stamina had increased and was able

> to do more.

> Then my endo prescribed 100mcg NHS T3 and I went on it and my symptoms

> returned and was bedridden, paranoid and suicidal. I increased it to

> 150, then 160 and more, but I was having such a reaction to the NHS T3

> (which I had never had before but then I was only on a low dose) that I

> returned to my Mexican Cynomel.

[Guest guest]

Hi Jaquie

Are you following Dr Hertoghe's other suggestions?

" Patient needs melatonin and probably growth hormone before bedtime at night

(calms down excess cortisol metabolites)

Vit.D is too low (provides fibromyalgia)

Thyroid hormones are too low (but desiccated thyroid type ERFA thyroid is

better than the `new' Armour thyroid.

Sweats come through because much too low estradiol => she needs after

gynecological cancer control to go on 1.5 to2.25 mg transdermal estradiol

(Estrogel) and 100 mg progesterone micronized from the 1st to the 25th day of

the month, then stop 5-6 days

Thierry "

> high dose of T3 only. The most I have been on is 5 grains p/d after two

> weeks.

I think you went up too fast and started on too much. I appreciate you were on

a big dose of T3, but I still would not have gone up so quickly and started so

much. I do not think you say " i'm on x of T3, so i'll take y of NDT " .

Don't you think it's likely you could be hyperthyroid? On NDT, people increase

by 15mg every 7-10 days, or by 1/2 a grain every month. You've gone up by

rather a lot more than this?

Crying - i wonder if this is low cortisol (had this recently myself), and i get

blurry double vision with low cortisol.

> I can't sleep during the day.

> Positives: Sleep like a log at night and wake up automatically between

> 7 and 9am, which I was unable to do on T3 AFTER my dose change. Wake up

> feeling fresh (but then go downhill fast after 10am).

is that after you take your dose of NDT,could you be going more hyperthyroid

after taking it? once it gets into your system?

> and my energy and stamina was returned to me. I felt the best in years

> two days AFTER starting Thiroyd... but this did not last. Why did this

> happen?

You did not stabilise on a dose, you were on 4,3, then 2 grains all in the space

of a few days. Then you go back up to 4? Then a week later you go up to 5?

I would say that's way too fast. You need to stabilise on a dose first, surely?

All the while you were taking NDT the T4 would be building up.

Sat 18 35.9C 97/65 (96) 1/2 grain (felt good)

Sun 19 36.0 112/67 (98) 4 grains (felt even

better)

Mon 20 35.6 119/68 (81) 3 grains (on a roll...

almost felt like my old self)

Tues 21 36.1 129/67 (88) 2 grains (still feeling

great)

Wed 22 36.1 124/67 (75) 4 grains (starting to feel

v. lethargic)

I'm wondering why you increased the dose if you were starting to feel better?

Sorry to labour the point, but....

>What should my next move be?

If it were me i'd look to back off and stabilise on the dose and go up *slowly*.

best regards,

chris