advice needed please

[Guest guest]

Hi everyone

as you know i'm now on T3 alone and am trying lots of different combinations

with it but i'm just not getting past a certain point, i've started on spatone

1 a day in a glass of fresh orange juice, plus all the vitamins and minerals

needed, as posted before i am coming off pizotifen so having withdrawals with

that.

I realise i 've been ill for a long long time but i CANNOT get my fitness levels

up , I am in close contact wtih and if it wasn't for him i wouldn't even be

at the stage i'm at, but i need some stamina without shaking and getting worn

out fast, as exercise is part of getting well now. We talked about HC but i

wanted to ask what these adrenal supplements are about, my gp won't entertain

anything like HC he thinks the endo has ran its course and signed me off from

him and they've done all the testing they need to do.

I have awesome days and i still have rough days , still trying hard to get my

pulse rate down a bit and blood pressure up a bit i'm hoping the spatone will

help with this.

Please could anyone give me any pointers as what to do now.

thankyou in advance

love Sha xxxxxxxxxxxxxxxxxxxxxxxxxxxx

[Guest guest]

Hi i am on T3 now been on it a couple of months now i'd been on T4 for many

years

love sha xxxxxx

>

> Hi Sue, you are having problems converting the T4 to the active hormone T3.

ask you doctor for a trial of a little bit of T3. if he refuses then go to our

files and print out evidence that some patients with thyroid problems have

difficulty converting the T4 into T3 by variable amounts. the reason for this

may be the auto-antibodies is hashimoto`s which don`t allow for the conversion,

that is do not bind allowing the hormone to be utilised properly.  angel.

>

[Guest guest]

Hi

I haven't been on T4 for a long time now , its just trying to get the T3 right ,

or if i'm going to have to have some adrenal support even tho my synacthen test

came back good, i'm wondering if there is anything natural i can take for

adrenal system, i'm on loads of supplements already.T3 has turned me around I

just need to get better. have no way of getting natural thyroid , gps and endo

won 't entertain it and i'm on disabitlity so i can't afford alot of meds.Thanks

love Sha xxxxxxxxxx

>

>

>

[Guest guest]

Hello Sha

are you on anything specifically for the adrenals at the moment?

Do you take vitamin C? Vitamin B5 is supposeed to help the adrenals, too

please advise what you take if you can

Some people take the adrenal products by Nutri. There is also a cortex product

by thorne.

chris

>

> Hi

> I haven't been on T4 for a long time now , its just trying to get the T3 right

, or if i'm going to have to have some adrenal support even tho my synacthen

test came back good, i'm wondering if there is anything natural i can take for

adrenal system,

[Guest guest]

Hello again

What a surprise, my GP has refused me both T3 or natural thyroid. She has said I

have to stay on my lowered dose of Levothyroxine 75/100 alternating for another

three months then have another blood test. She has said that she will refer me

to an endocrinologist if I wish, do you think there is any point, do you know of

an eno that may be sympathetic and help me to get better? I don't mind

travelling, I live in Warwickshire. I'm sure I have hashimotos as have a goiter

and was once tested for antibodies, which I had. Where do I go from here?

I tried to argue the point that my TSH was low, FT4 high but FT3 low so surely

this proves I'm not converting to T3, but it was lost on my GP, I don't think

she knows much about thyroid disease.

Sue

>

> TSH will be suppressed because you are taking thyroid hormone and the

> pituitary gland, which secretes TSH recognises there is sufficient thyroid

[Guest guest]

Hello Sue

sorry to hear about your appointment with your GP :-(

are you in a position to see Dr Skinner? He is in birmingham so not too far

away, but i believe he is private only.

chris

>

> Hello again

> What a surprise, my GP has refused me both T3 or natural thyroid. She has said

I have to stay on my lowered dose of Levothyroxine 75/100 alternating for

another three months then have another blood test. She has said that she will

refer me to an endocrinologist if I wish, do you think there is any point, do

you know of an eno that may be sympathetic and help me to get better? I

[Guest guest]

Hi Chris

thankyou for your reply,

the supplements i take are

magnesium

vit B " 50 " complex twice a day

selenium once a day

vit c around 6 times a day

vit D

multi mineral

i've gone on to spatone in fresh orange too just one sachet

and i'm on T3

thanks love Sha xxxxxxxxxxxxxxxxxx

> >

> > Hi

> > I haven't been on T4 for a long time now , its just trying to get the T3

right , or if i'm going to have to have some adrenal support even tho my

synacthen test came back good, i'm wondering if there is anything natural i can

take for adrenal system,

>

[Guest guest]

ok do you feel anxious generally? the reason i ask is that i found the nutri

adrenal glandulars to make me feel more anxious, but the adrenal cortex extract

did not.

You can buy the Nutri adrenal products with 33% off - go to the nutri discounts

file in here:

thyroid treatment/files/DISCOUNTS%20ON\

%20SUPPLEMENTS%20and%20TESTS/

Also, there is 's adrenal dynamite

http://www.revital.co.uk/Allergy_Research_Dr_s_Dynamite_Adrenal_Powder

in fact if you do a search on adrenal on revital.co.uk, you 'll find a few

things:

http://www.revital.co.uk/product_search.cfm?searchString=adrenal & x=19 & y=12

And wilson's adrenal rebuilder, too - it comes from the USA and made me

anxious:

http://www.adrenalfatigue.org/adrenal-rebuilder-formula.html

There's isocort, but i gather they've changed the formula recently. the old

formula did not make me anxious:

http://www.iherb.com/Bezwecken-Inc-IsoCort-Adrenal-Support-240-Pellets/30335?at=\

0

Thorne do these products -

http://www.iherb.com/Thorne-Research-Adrenal-Cortex-60-Veggie-Caps/18706?at=0

(i've tried this, no problems with it)

http://www.iherb.com/Thorne-Research-Cortrex-60-Veggie-Caps/18735?at=0

http://www.iherb.com/Thorne-Research-Cortine-60-Veggie-Caps/18705?at=0

Note you can buy the thorne adrenal from the UK, mandimart:

http://www.mandimart.co.uk/adrenal-cortex-50mg-by-thorne-research-60-capsules-71\

9-p.asp - mandi always dispatches very quickly, i've found.

labs do a product too, but i've not tried it.

http://www.nutritiondynamics.com/catalog/products/ViewProduct.rails?productid=23\

3

I did not get anxiety on adrenal cortex only products, but did on whole

glandular ones.

I thought the thorne research one from mandi mart (or i herb) was the best for

me

chris

>

> Hi Chris

>

> thankyou for your reply,

> the supplements i take are

> magnesium

[Guest guest]

Hi Chris

yes i am always anxious about something even if it is nothing if you know what i

mean. And since being on T3 i'm having some brilliant days but also really rough

days , and i still don't have any stamina, thankyou thankyou for the links that

is brilliant.

Love Sha xxxxxxxxxxxx

>

>

[Guest guest]

Hi , i strongly advice you to print out the file in our folders group main site. the file states that you can have conversion problems due to a faulty gene. or something like this. I recommend all members to read all the files their as many questions posted will be answered their and will help you understand the problems with being hypo/hyper/ Adrenals.

[Guest guest]

Hello Chris

Thanks for the advice. Have spoken to Dr S surgery, he needs a referral, will

ask my GP to refer me when I see her next week! Wish me luck.

Sue

>

> Hello Sue

>

> sorry to hear about your appointment with your GP :-(

>

> are you in a position to see Dr S

>

[Guest guest]

Good luck Sue, please let us know how you get on

I don't think it's a 'right' to have a second opinion but i very much hope you

can get a referral to Dr S and that he can help you. hopefully it'll go in your

favour that you will be paying for the consultation privately

Chris

>

> Hello Chris

>

> Thanks for the advice. Have spoken to Dr S surgery, he needs a referral, will

ask my GP to refer me when I see her next week! Wish me luck.

> Sue

[Guest guest]

Hi Chris

My GP has agreed to refer me to Dr S (although I will believe it when I actually

get the appointment!) She also wants me to see an endocrinologist on the NHS,

who she says is quite holistic, it's a lady eno at Northampton General Hospital.

I have agreed although am not sure about seeing her.

GP wanted to prescribe anti depressants, which I refused as I'm not depressed,

although I do feel this hypothyroidism is taking over my life as I am spending

so much time researching, to the point where I seem to know more than my GP. I

printed out & gave my GP lots of info from Throid UK web site; such as basal

temp info, vitmins & info on natural throid for her to look at,with the letter

from MHRA to Sheila saying that natural thyroid can be prescribed as I thought

you never know she may read it & change her mind!

I asked for blood tests, results of which are below, although none of the

results are below the range, I think some are rather low, when I suggested this

to my GP she told me to take a multi vitamin! Can you give me some advice what

to take please. I already take selenium 200 mcg, which has 39mg calcium

included, Bio care AD206 vit & mineral sup with which has- vitC 200mg, ginseng

200mg B5 200mg, zinc 3.4mg, licorice, chromium 100mcg & manganese 2.2mg and have

just started taking nature complete chlorella & spirulina which has vit B12

22mcg, iron 4.9mg, zinc 7mg, magnesium 10mg, vit E 0.36mg included (sorry to be

so pecise, but am finding it quite daunting as most supplements have so many

things in them, I don't want to overdose on anything!) Can you advise on what

vitamin D to take & how much, my GP doesn't seem to have a clue!

Ferretin 42 (10-291)

Vit B12 548 (210-910)

Folic acid 8.9 (2-8-24)

Vit D 35.5 (50-150)(consider supplementing 25-50)

I have quite a large non toxic multinodular goiter, which has grown larger over

the last 8yrs (have had 2 scans) am wondering whether to take Iodine or sea salt

for this as I have read Dr P's stuff about Iodine & know that he believes it

shrinks goiters, any advice, am on 100/75mcg (alternating) Levothyroxine, is it

safe to take Iodine when on Levo?

Many Thanks to all at Thyroid UK who have given me the knowledge & confidence to

tackle my GP, I hope I will get somewhere on the road to recovery very soon!

Sue

>

> Good luck Sue, please let us know how you get on

>

> I don't think it's a 'right' to have a second opinion but i very much hope you

can get a referral to Dr S and that he can help you. hopefully it'll go in your

favour that you will be paying for the consultation privately

>

> Chris

[Guest guest]

Sue I hope you are meaning thanks to TPA.    It would be a little insulting to TPA to be thanking, on the TPA forum, another group for the help given to you.Lilian

Many Thanks to all at Thyroid UK who have given me the knowledge & confidence to tackle my GP, I hope I will get somewhere on the road to recovery very soon!

Sue

-

[Guest guest]

Hello Sue

that's good news on the referral. when will she write the letter do you think?

I would see Dr S and see what he has to say, and depending on his treatment it

might help if you can go to see the endo at notts and say i'm better/no better

on x y z. you don't have to go to see her, though?

> GP wanted to prescribe anti depressants, which I refused as I'm not depressed,

although I do feel this hypothyroidism is taking over my life as I am spending

so much time researching, to the point where I seem to know more than my GP.

well hopefully once you see dr S or the Notts endo, you can get better and move

on. with proper treatment, you should be able to if you feel better.

do you take a b vitamin complex? I do not get on well with b vitamins but think

you are supposed to take them in balanced amounts. i like nature's own b

complex, it's supposed to be easily absorbed.

how about copper, do you take that ? i took zinc with out copper and my copper

went below range and my zinc went way over range! vit E went over range, too.

these are simple tests i don't know why they won't do them.

>Can you advise on what vitamin D to take & how much, my GP doesn't seem to have

a clue!

i can't advise as i'm not qualified however, this got my D levels up :

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

are your vit D results for D3 ?

> Ferretin 42 (10-291)

i believe this should be higher

> Vit B12 548 (210-910)

I have read that B12 should be higher- you can take sublingual b12 nuggets to

increase it, eg:

http://www.iherb.com/Solgar-Vitamin-B12-100-mcg-100-Tablets/15346?at=0 (other

brands are available )

> I have quite a large non toxic multinodular goiter, which has grown larger

over the last 8yrs (have had 2 scans) am wondering whether to take Iodine or sea

salt for this as I have read Dr P's stuff about Iodine & know that he believes

it shrinks goiters, any advice, am on 100/75mcg (alternating) Levothyroxine, is

it safe to take Iodine when on Levo?

No idea, sorry. :-(

> Many Thanks to all at Thyroid UK who have given me the knowledge & confidence

to tackle my GP, I hope I will get somewhere on the road to recovery very soon!

Thyroid UK and TPA UK (Thyroid patient advocacy UK) are two different

organisations! :-) This is the forum of TPA UK, not Thyroid UK ;-)

chris

[Guest guest]

Hi Lilian

Yes of course I meant to thank TPA, apologies!!!, this thyroid stuff is all

doing my head in!

Sue

>

> Sue I hope you are meaning thanks to TPA. It would be a little insulting

> to TPA to be thanking, on the TPA forum, another group for the help given to

> you.

>

> Lilian

[Guest guest]

Lol Sue, I presumed you meant TPA - and hopefully everyone else presumed it as well   Lilian

Hi Lilian

Yes of course I meant to thank TPA, apologies!!!, this thyroid stuff is all doing my head in!

Sue

-

[Guest guest]

Hey Sue, although I am sure that all those at Thyroid UK will be

pleased to receive your thanks, I should point out that this particular group

is not thyroid UK, it is Thyroid Patient Advocacy (TPA) - we are quite a

different organisation from TUK in that we are specifically about campaigning to

get the present thyroid diagnosis and treatment protocol changed to include a

choice of thyroid hormone replacement and to campaign for justice for all

sufferers of thyroid disease, which they are being denied at the present time.

Luv - Sheila

Many Thanks to all at Thyroid UK who have given me the knowledge &

confidence to tackle my GP, I hope I will get somewhere on the road to recovery

very soon!

Sue

[Guest guest]

Hi Shelia & all at TPA, Sorrrry!! of course I meant to thank TPA, NOT Thyroid

UK, my brain is so fuzzy at the moment, I'm doing so many silly things! Please

forgive me.

Sue

>

> Hey Sue, although I am sure that all those at Thyroid UK will be pleased to

> receive your thanks, I should point out that this particular group is not

[Guest guest]

I don't want to be a scare merchant - but I thought I would metion my experience

with Vit.d supplementation.

I read a lot of Health experts recommendations on taking much larger doses of

Vitamin D, and because mine had been low when tested by Doc. I embarked on

taking the very same 5000 int.units you pegged up here.

I started feeling very weak and unwell some months later - and after taking some

advice from the labs(?) my Doctor tested my parathyroid Hormone levels - which

it turned out were quite a lot above ref. range. When this happens - it is

usual for Calcium to be high in the blood also. but this was not the case with

me - Calcium was in fact low, and sometimes dropping out of ref. range low.

She instructed me to stop taking the Vitamin D supplement, and re tested

parathyroid hormone over a 6 month period when it retuned to within reference

range again.

I have Osteoporosis(as well as HypoT) - and suffered my 4th broken ankle earlier

this year.

I am now being told by Osteopathic Doctor to take Calcium supplements and much

lower doses of Vit.D

I am interested to Know whether anyone else has had a similar result from taking

large doses Vit. D?

Of course, I do not know for sure that this is what caused the raised

Parathyroid Hormone.

>

> Hello Sue

>

> that's good news on the referral. when will she write the letter do you

think? I would see Dr S and see what he has to say, and depending on his

treatment it might help if you can go to see the endo at notts and say i'm

better/no better on x y z. you don't have to go to see her, though?

>

>

[Guest guest]

Hello Sue

>> Thanks for your reply. I'm not sure if the Vi D test was D3 does it make any

difference?

I am sorry I do not know much about the vitamin D blood testing really. I was

tested for Vit D on the NHS, and tested privately. I have to admit I'm not

sure whether they test for D3 or just vitamin D; I am going away in the morning

for a couple of days so a bit rushed but wanted to reply. I do take Vitamin D3

- another member has just posted with a very interesting post about vitamin

D/parathyroid problems but I don't have any time to read it in detail but it

looks like caution with Vitamin D is advisable? My Vit d3 levels are now near

the top of the range, so I guess I can hold off on it.

>I asked GP for copper & zinc tests but she said they didn't do them!

It is a pity, as I think these are just basic things that can make a big

difference. I have had to correct multiple deficiencies and I feel better for

this. one of my deficiencies was copper. I also have low (ionised) calcium and

too much zinc; about 30% over the top of the range! These are just basic tests,

it is a pity we cannot get access to them easily.

> Hope she will write the letter this coming week, she asked me where I got his

name from, which is why I'm wondering is she will change her mind about

reffering me.

Ok well hopefully she will, and it'd be good to get expert input from Dr S.

Perhaps the dr was just curious about Dr S rather than deciding whether to

reconsider referring you?

> I don't take a Vit B complex but will condsider it, although some of the other

supplements I take have some of the B vitamins included.

I am no expert on the vitamin Bs, either :-) (I am not an expert on anything in

fact!) but I did find the Nature's answer ones to be quite well tolerated in me;

normally I don't tolerate high dose Bs very well at all. Mind you, the Nature's

answer B's are not high dose, so that might be why i can tolerate them. I like

their products though - they are supposed to be in an absorbable state because

of how they are made - eg, i think their zinc is extracted from broccoli grown

in zinc rich soil. they are quite pricey though unfortuantely

http://www.natures-own.co.uk/acatalog/p315.html

I hope you do not have to wait long for your letter, and your appointment with

Dr S. Please let us know - if you want to :-) - about how you get on with your

consultations, I'd be interested to hear and it might help other people on this

group, too

I am sorry I cannot be more help to you but I did want to reply so you did not

feel ignored. I best go finish my packing now.

best wishes

chris

[Guest guest]

It sounds like this is a case of

which came first, the chicken or the egg? In vitamin D deficiency,

calcium and phosphate levels in the blood decrease because vitamin D is

necessary for absorption of these minerals. Because not enough calcium and

phosphate are available to maintain healthy bones, vitamin D deficiency may

result in a bone disorder called rickets in children or osteomalacia in adults.

In a pregnant woman, vitamin D deficiency causes the deficiency in the fetus,

and the newborn has a high risk of rickets. Occasionally, the deficiency is

severe enough to cause osteomalacia in the woman. Vitamin D deficiency makes

osteoporosis worse. To try to increase the low calcium level in blood caused by

vitamin D deficiency, the body may produce more parathyroid hormone. However,

as the parathyroid hormone level becomes high (a condition called

hyperparathyroidism), the hormone draws calcium out of bone to increase the

calcium level in blood. Thus, bones are weakened. http://www.merckmanuals.com/home/disorders_of_nutrition/vitamins/vitamin_d.html

I started feeling very weak and unwell some months later - and after taking

some advice from the labs(?) my Doctor tested my parathyroid Hormone levels -

which it turned out were quite a lot above ref. range. When this happens - it

is usual for Calcium to be high in the blood also. but this was not the case

with me - Calcium was in fact low, and sometimes dropping out of ref. range

low.

She instructed me to stop taking the Vitamin D supplement, and re tested

parathyroid hormone over a 6 month period when it retuned to within reference

range again.

I have Osteoporosis(as well as HypoT) - and suffered my 4th broken ankle

earlier this year.

I am now being told by Osteopathic Doctor to take Calcium supplements and much

lower doses of Vit.D

I am interested to Know whether anyone else has had a similar result from

taking large doses Vit. D?

Of course, I do not know for sure that this is what caused the raised

Parathyroid Hormone.

___

[Guest guest]

Hi Chris

Thanks so much for your reply & for the info on vitamins. Have a good time, (if

it's a holiday you're going on)

I am away myself for a week later in the week, but will definately let you know

how I get on with my appointments.

Sue

>

> Hello Sue

>I hope you do not have to wait long for your letter, and your appointment with

Dr S. Please let us know - if you want to :-) - about how you get on with your

consultations, I'd be interested to hear and it might help other people on this

group, too

>

> I am sorry I cannot be more help to you but I did want to reply so you did not

feel ignored. I best go finish my packing now.

>

>

> best wishes

>

> chris

>

[Guest guest]

Thanks for your advice regarding supplementing with Vit D, I have taken it on

board & will take care not to take too high a dose of spplementation.

Sue

>

> I don't want to be a scare merchant - but I thought I would metion my

experience with Vit.d supplementation.

> I read a lot of Health experts recommendations on taking much larger doses of

Vitamin D, and because mine had been low when tested by Doc. I embarked on

taking the very same 5000 int.units you pegged up here.

[Guest guest]

Hi Chris

Just wanted to let you know that I did get to see Dr Skinner, he has upped my

Levothyroxine from 75/100 alt days, gradually increasing to 150mcg over 10

weeks, so now on 125mcg. He's written to my GP who has agreed to let me try &

will prescribe so far, although have to have a blood test before I move up to

the 150mcg dose!!. So far I feel a little better, consipation is better, and my

mood & thought proccess & energy is improved, although I still can't sleep for

more than 2 hrs without waking? Dr Skinner thinks that my sleep should imrove as

I feel better with the higher medication. I have also agreedwith my GP to see

the endo on the NHS, I'm just hoping that the Endo agrees with Dr Skinners

treatment regime and that It works for me. I'm going back to see Dr S in

January, watch this space!!

Thanks for your help

Best Wishes

Sue

>

> Hello Sue

> Ok well hopefully she will, and it'd be good to get expert input from Dr S.

Perhaps the dr was just curious about Dr S rather than deciding whether to

reconsider referring you?

> I hope you do not have to wait long for your letter, and your appointment with

Dr S. Please let us know - if you want to :-) - about how you get on with your

consultations, I'd be interested to hear and it might help other people on this

group, too

>

> I am sorry I cannot be more help to you but I did want to reply so you did not

feel ignored. I best go finish my packing now.

> chris