Re: FW: Advice on how to proceed desperately needed

[Guest guest]

Wow, Sheila, thank you so so much! This has been worrying me as my latest tests seemed very different and I did not have the time to ask Dr S as he cut our consultation short.Is Dr Thierry aware that I am on 150mcg T3 now because from what he says, he's recommending NDT? I am also still menstruating regularly (except I seem to be 4 days late this time and do not have any premenstrual pains which usually warn me when they I should be starting). I also went off the pill more than a year ago (the tests you sent were done soon after) - would this affect the results?I am waiting for my endo to send me my latest results but I believe he may be waiting for some sort of response from me. Reason being, his last letter which I had also sent to you, stated that, "Her LH was 39.7 U/L , FSH 11.8 U/L and oestradiol 1108pmol/L, with a normal full blood count.". The latest tests show my LH and FSH as lower and my oestradiol as raised, but of course I can't really know without the reference ranges. I could try and call the path lab tomorrow to see what the ranges are. In the tests you sent him, my FSH was 88.1 (2.5-10.2), LH 91.1 (1.9-12.5) and Oestradiol 586 (69-2095). Was he aware of my recent blood results on T3 only and that I was on NO T3 for 24hrs before the test, ie:May on 125mcg T3 (I had run out of T3 for one week before the test and was very ill when I saw him!)TSH <0.05 (0.3-4.2)fT3 2.0 (2.5-5.7)September on 125mcg T3TSH given as 'suppressed'fT3 4.0 (2.5-5.7) December on 150mcg T3TSH <0.05 (0.3-4.2)fT3 3.4 (2.5-5.7)I also put this on the TalkHealth forum and Professor Collin Dayan's responded as such:In a separate post on T3/T4 treatment I have described the reasons why doctors are reluctant to prescribe T3. It is unusual that your T3 is not a lot higher considering that you are on doses of T3 that are 2-3x the normal requirement. This raises the possibility that you do not absorb it very well. An abnormality in the pituitary or adrenal gland would not explain this.Professor Colin DayanHe has not responded to my questions to him, ie:Thank you Professor Dayan. I had read the other post but as I cannot convert T4 to T3 as well as not being able to tolerate T4, my only option is the T3 I am currently taking. I am willing to take the risks as being bedridden is not an alternative. The symptoms are so unbearable that I would not want to live. 1. Do you have any suggestions why I would not be absorbing my T3 so that I can get this investigated? 2. And how do I get my endocrinologist to agree to a functional T3 replacement therapy whilst he carries out these tests?3. If I am having absorption issues then why is my medication being adjusted according to my TSH and not my fT3? If Dr Thierry believes I should be on Erfa and not T3, then I will make the change. My sweating stops when on the high dose of T3 but should I do anything strenuous, it starts again and I become symptomatic, lose strength in my arms and legs and need to rest up frequently.I have been on 10,000iu of D3 a day since September 2011, and I have felt such an improvement in muscle strength but the Fibromyalgia persists although it does improve significantly when on the higher dose of T3, to the extent that I don't notice it as much and can get on with things.Thank you for helping, Sheila. Would you suggest I tell Dr S what both Dr Thierry and Prof Dayan have said?LoveJacquie >> Jacquie> > I sent all of your results to Dr Thierry Hertoghe and asked for his thoughts> about your case. He says:> > "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"> > I hope this helps.> > Luv - Sheila>

[Guest guest]

Yes, he is aware of everything because I sent him a copy of what

you had sent to me so assume he read through it before giving his comments.

Perhaps he believes that NDT would work better for you than the T3-only. Yes, I

would show his comments to Dr S and also Colin Dayan's comments also.

Luv - Sheila

Wow, Sheila, thank you so

so much! This has been worrying me as my latest tests seemed very

different and I did not have the time to ask Dr S as he cut our consultation

short.

Is Dr

Thierry aware that I am on 150mcg T3 now because from what he says, he's

recommending NDT? I am also still menstruating regularly (except I seem

to be 4 days late this time and do not have any premenstrual pains which

usually warn me when they I should be starting). I also went off the pill

more than a year ago (the tests you sent were done soon after) - would this affect the results?

[Guest guest]

Jaqcuie

I hope this gives you some hope - your case sounds complicated but if you get to

see someone who knows what they're doing, it won't be. Dr TH looked at your

results and could see the issue pretty clearly judging by his reply.

Melatonin is cheap ish to buy (i appreciate you are on a very tight budget).

Is there any chance you can ask your doctors to test you for growht hormone?

it's important to also get IGFBP3 tested, i think, as this affects whether IGF-1

is usable or not. (The wonderful NHS tested my IGF-1,and it was ok, but they

didn't test my IGFBP-3, which was way over range, making that IGF-1 unusable).

I believe that IGF-1 is released in response to growth hormone.

Chris

>

> Wow, Sheila, thank you so so much! This has been worrying me as my

> latest tests seemed very different and I did not have the time to ask Dr

[Guest guest]

Thank you, Chris... yes it does, although I don't understand it all. I have copied my endo's second letter which does not reveal much but it seems he has done the IGF-1 which was 'normal'. So you are telling me to request IGFBP3? Do others on the forum concur?Herewith the letter:"I reviewed this lady regarding her thyroid again in clinic today. A blood test performed in September showed an acceptable vitamin D level of 80.3 nmol/l (target range 70 to 150). She has increased her vitamin D supplement since that time and I have, therefore, suggested rechecking her levels today to make sure no other change is needed. Her other blood tests performed at that time showed acceptable liver function, calcium, phosphate, magnesium, iron and full blood count with good vitamin B12 and folate levels.She also has a normal IGF-1, DHEAS and morning cortisol levels (these were taken midday), suggesting no other change was needed at that stage. Free T4 was low, as expected with the therapy she is taking. Free T3 was within normal range at 4.0 pmol/l (normal range 2.5 to 5.7) and TSH was suppressed as before. We will recheck her blood tests today to make sure levels are settling and whether any change, particularly in vitamin D in particular, is needed. We have discussed that it would be sensible for her to use a prescribable T3 preparation rather than the Cynomel which she is obtaining, and I will contact you and the patient with the results of the above blood tests, with potential options for the dosing of this."LoveJacquie>> Jaqcuie> > I hope this gives you some hope - your case sounds complicated but if you get to see someone who knows what they're doing, it won't be. Dr TH looked at your results and could see the issue pretty clearly judging by his reply.> > Melatonin is cheap ish to buy (i appreciate you are on a very tight budget).> > Is there any chance you can ask your doctors to test you for growht hormone? it's important to also get IGFBP3 tested, i think, as this affects whether IGF-1 is usable or not. (The wonderful NHS tested my IGF-1,and it was ok, but they didn't test my IGFBP-3, which was way over range, making that IGF-1 unusable). I believe that IGF-1 is released in response to growth hormone.> > Chris> >

[Guest guest]

I don't know if it'll help you, Jacquie, but this is the Melatonin that Dr T H

told me to take:

http://www.eurohealthproject.com/hormones/biotonin.html

I take the 0.2mg one, you may or may not need more - you get 120 in a box. They

do a 0.5mg one, maybe you could cut it in half to save money, but beware that

the tablets are very crumbly so as they dissolve easy! I can try one with a

pill cutter see if it cuts ok?

I just tried it with my pill cutter, and they do cut ok, though a bit crumbles

away. You just put them under your tongue and they dissolve.

Melatonin is supposed to help T4 convert to T3, did you know that?

Melatonin may help growth hormone levels on it's own

http://www.ncbi.nlm.nih.gov/pubmed/8370132

I got my Vitamin D levels up with this vitamin D - i note Dr TH says your levels

are too low:

http://www.iherb.com/Healthy-Origins-Vitamin-D3-5-000-IU-360-Softgels/18335?at=0

- it's 60% off and should only take about a week or so to get to you from the US

(If yo'uve not ordered from Iherb before, i think you can get $5 off)

I had a good think about what to try to say to you going back to your original

post, but I couldn't think of anything helpful really. I think the information

from Dr TH changes the picture anyway, and gives new leads.

Chris

>

> Jacquie

>

> I sent all of your results to Dr Thierry Hertoghe and asked for his thoughts

> about your case. He says:

>

[Guest guest]

Yes, that is what I would suggest to you.

Not many people know much about IGFBP-3. I have been to see Dr TH, he put me on

low dose GH because of my IGFBP-3. I am not an expert on this but I do know it

needs to be considered.

Take a look at my results:

Somatomedin-C (IGF-1) 388 ng/mL 190-490

Normal IGF-1, right?

But high IGFBP-3....

IGFBP-3 + 8.26 mg/L 2.96-4.96

IGFBP-3/IGF1 + 5.62 mol/mol 0-4.5

Can I refer you to the Hertoghe questionnaire - do you have any symptoms of

growth hormone deficiency? (click edit to fill it in, answers are on tab 2)

http://blog.saravanan.org/?p=40

I have not seen the results that Dr TH gave his opinion on, nor really the NHS

endo - i have lost track sorry with all the diffrerent letters and things going

on back and forth. I would look at symptoms and see if you can pursue what Dr

TH said if those symptoms and that course of action seems right?

Chris

>

> Thank you, Chris... yes it does, although I don't understand it all. I

> have copied my endo's second letter which does not reveal much but it

> seems he has done the IGF-1 which was 'normal'.

[Guest guest]

Additionally, low Growth hormone may cause T4 > T3 conversion problems

http://www.ncbi.nlm.nih.gov/pubmed/7828350

chris

[Guest guest]

I hope you dont mind me butting in, - regarding the IGF1. Mine is 60 in a range of 94-380 and my idiot of an Endo, stated that 'Many people live with low igf1 and cope with it'. I dont know if you have read about the health prospects of low ranges, but I certainly have. It seems Dr T takes low IGF1 more seriously than British Dr's. Im at a loss. My main priority has been sorting out my low thyroid and adrenals, which I'm pleased to say are now coming along. But the IGF1 issue prevails... any advice ? My Gp has never heard of igf1, so no use relying on her to take the lead ?? Ps. Im just 50 and that result of 60, must be that of a 99 year old

!! Dawn

[Guest guest]

Hi Dawn

I don't really have any advice as such. I know that Dr Hertoghe will treat low

growth hormone (GH), using low doses, if he deems it necesary. As he balances

all other hormones, he can use a much smaller dose than most doctors - it 'only'

costs about 650 pounds a year (plus needles) vs several thousand pounds for

normally. there is a private doctor down surrey way i think who will treat with

GH but he's dear i think and the treatment is dear - 200-300 a month. that said

if yuou have a severe GH deficiency it might cost more than 650 a year, but even

then i doubt it'd be a lot more.

GH can make a world of difference if you're low on it, though some people have

bad side effects (i can think of 2 people from here) but i have only felt a

benefit from it...initially it felt like a wonder drug, but that has worn off

and i think it just helps a little now

symptoms of low GH:

Growth Hormone

My hair is thinning

My cheeks sag

My gums are receding

My abdomen is flabby/I've got a " spare tire "

My muscle are slack

My skin is thin and/or dry

It's hard to recover after physical activity

I feel exhausted

I don't like the world (I tend to isolate myself)

I feel contineously anxious and worried

Prolbem is if you try to get GH on the NHS you'd likely have to have an insulin

test, which i really wouldn't want.

>My main priority has been sorting out my low thyroid and adrenals, which I'm

pleased to say are now coming along.

everything all ties in together doesn't it. maybe you could get more benefit

with an optimal diet but i guess the bottom line is if you need GH then you need

it. It is the one thing that it's hard to self treat with - there are

bodybuilding sources but i'm not sure how trustworthy they are, and then it's

getting the doses right. If you get the 'proper' GH you just dial the number

and stick it in and that's it...!

please ask if you have any more questions. i suppose your endo is constrained by

lack of money available - and it doesn't sound like his specialist area either.

chris

>

> I hope you dont mind me butting in, - regarding the IGF1.  Mine is 60

in a range of 94-380 and my idiot of an Endo, stated that 'Many people live with

low igf1 and cope with it'.  I dont know if you have read about the health

prospects of low ranges, but I certainly have.