Re: Hi all re possibly trying T3 and here are my bloods so far

[Guest guest]

Hi Dawn,

Oh dear, you are short of a lot of stuff...... no wonder you feel rough......

You need zinc, B12, D3 Folate and Iron...... they are all too low.....

and so T3 would probably make you feel worse...... The B100 complex probably

won't give you enough B12.... I used Solgar sublingual ones 1000 mg (or

mcg?) a day..

The low D3 will mean high cholesterol..... you can buy soft gels, 2400 a

day..... (or more).....

x

>

> Hey folks,

> I to all who remember me by the way. Very ill, been too ill to post,

> virtually housebound, couldn't even walk down to the Dr's room today had

> to lie in the nurse's clinic.

> I was hoping to try T3 but from what has come back in bloods so far, it

> seems unlikely to be a good idea at the moment

[Guest guest]

Hey there

Thanks for answering me so quickly. Yeah ( sadly no T3 for me yet eh? +I have

a huge problem with the vit D in either form, I cannot tolerate it, even a

squidgen from cereal fortification over a few days now gives me horrendous

symptoms. That reaction started happening a while ago, and short of a holiday or

very sunny spring I am a little stuck for now on that one . Maybe other

deficiencies impact upon how it works, but I have tried and tried to tolerate it

but is impossible. I will try the Solgar B12 as soon as I can afford it thanks

Is everyone still preferring the methyl rather than the Cyanocobalamin B12?

luv n hugz

Dawnx

> Hi Dawn,

>

> Oh dear, you are short of a lot of stuff...... no wonder you feel rough......

>

> You need zinc, B12, D3 Folate and Iron...... they are all too low.....

and so T3 would probably make you feel worse...... The B100 complex probably

won't give you enough B12.... I used Solgar sublingual ones 1000 mg (or

mcg?) a day..

>

> The low D3 will mean high cholesterol..... you can buy soft gels, 2400 a

day..... (or more).....

>

> x

>

>

[Guest guest]

I have a huge problem with the vit D in either form, I cannot tolerate it, even a squidgen from cereal fortification over a few days now gives me horrendous symptoms. That reaction started happening a while ago, and short of a holiday or very sunny spring I am a little stuck for now on that one . Maybe other deficiencies impact upon how it works, but I have tried and tried to tolerate it but is impossible. I will try the Solgar B12 as soon as I can afford it thanks Is everyone still preferring the methyl rather than the Cyanocobalamin B12?

Hello Dawn,I just had a look at your lab figures. There are several issues going on as has said, plus your liver seems to be a little compromised, but it's you mentioning that you can't tolerate D3 and your comment about ' coming out with something on your chest' that makes me wonder .... Have you ever been tested for Lupus or Lyme Disease? When I googled 'D3 intolerance' there appeared to be a connection with either.D3, although called a vitamin, is in fact a hormone which apparently boosts the immune system. When somebody has an autoimmune condition like, for instance, Lupus, then boosting the immune system can cause a flare up of this condition .... hence giving a horrible reaction. In case of Lyme's it's a similar scenario, I understand.Just a thought....Best wishes ,

[Guest guest]

Hi

That is interesting tbh, my symptoms often bring up lupus in google lol (or not

funny ) and i was tested for lyme and lupus but they came back neg however i

understand that doesn't always mean you dont have it.

Yes that liver thing is a tad worrying tbh I itch like mad too.

It would certainly explain the D3 making me ill they way you say that about my

immune system hmmm. Certainly worth a mention to the Dr when she comes back to

work .

Wierd results should come back like that because I had the enzyme test as I

suspected heart failure due to the severe breathlessness knowing I have a sloppy

valve, I have had SOB for years, but interesting if not a little disconcerting

about the liver and the possible AI disease with the infection.

I feel so ill that I do most of my internet surfing laid flat now, very tired,

will look in in the morning.

Been trying to get sorted out for years, it would be mad if at this late stage

they finally found out what had been wrong from 'TPA recomended' blood draws and

my couple of suggestions lol.

Thanks for the thoughts .

luv n hugz

Dawnx

PS bet they blame the HC

[Guest guest]

Dawn

If you told them you ate mars bars or lettuce they would blame the symptoms on

that..... anything rather than use logic and reason to work out what the

problem is..... I would sack the lot of 'em and start again....

xx

>

>

>

> Dawnx

> PS bet they blame the HC

>

[Guest guest]

>I will try the Solgar B12 as soon as I can afford it thanks Is everyone

still preferring the methyl rather than the Cyanocobalamin B12?

Hi Dawn

Sorry to hear you're still struggling. Have you looked at other hormone

deficiencies as well (such as sex hormones)?

Personally, no i do not prefer methyl b12 at all, it makes me feel bad.

Cobalamin's the one i prefer. I believe Solgar have changed their formula - I

used to buy Solgar cobalamin nuggets in england from revital, but now i can't,

it's methylcobalamin or cyanocobalamin

You can buy cobalamin in the USA though:

http://www.iherb.com/Solgar-Vitamin-B12-1000-mcg-250-Nuggets/8641?at=0

chris

[Guest guest]

> That is interesting tbh, my symptoms often bring up lupus in google lol (or not funny ) and i was tested for lyme and lupus but they came back neg however i understand that doesn't always mean you dont have it.

Good morning Dawn,When you say that you have been tested for Lupus and Lyme.... The test for Lyme is very unreliable and so is the common ANA test (for Lupus). To rule out Lupus you would need a full rheumatology test - and I have it from a high authority that this is an extremely expensive test. I am talking probably a couple of thousand £ for that, so the average Doctor would be very reluctant to order a full rheumatology, particular when an ANA test is negative. The trouble with ANA is, however, that - allthough 100% reliable when the result comes back positive - the risk of being wrong when the result is negative is around 50%.... so extremely unreliable.... And were you taking HC when the ANA test was done? If so, this might have influenced the test result.IF - and this is a big if - you had Lupus, then the amount of HC would indeed play a major role... How much do you take? I assume a physiological dose? (under 40mg) - It would be too lengthy to type out on my iPad right now the treatment regime for active Lupus, but when a (non-endocrine) autoimmune disease flares up, the treatment option is usually to knock the immune system on the head sharply with a therapeutic amount of steroids until in remission. If you took too small a dose of steroids, immunity would be lowered (as opposed to suppressed) and that would worsen the condition because it opens the flood gates for other diseases and it does not stop the active condition from getting on with its destruction.It would probably be asking a lot from your doctor to order a full rheumatology on the grounds that you you can't tolerate D3, but otoh, you say that you have been /are extremely ill - So perhaps there would be justification to look into the criteria again??Warm wishes,

[Guest guest]

Hello Dawn, I am sorry to hear that you are still suffering so

badly without anybody seemingly having a clue as to what is really going on,

but might have found a possible answer re Lupus and this should be

looked into . Check over the symptoms here and see if you feel this could be a

possibility. There are Lupus forums where you might find more answers http://www.londonlupuscentre.co.uk/lupus/symptoms/

..

When you say you were tested for Lupus and the results came back

normal, what were the tests and what were the actual results - you know what we

think of any doctor telling us " your results are normal " .

Also, the following is a good article about Vitamin D - what it

is, what it does - http://www.vitaminsworld.org/vitamins/vitamin-d.html

Luv - Sheila

Wierd results should come back like that because I had the enzyme test as I

suspected heart failure due to the severe breathlessness knowing I have a

sloppy valve, I have had SOB for years, but interesting if not a little

disconcerting about the liver and the possible AI disease with the infection.

I feel so ill that I do most of my internet surfing laid flat now, very tired,

will look in in the morning.

Been trying to get sorted out for years, it would be mad if at this late stage

they finally found out what had been wrong from 'TPA recomended' blood draws

and my couple of suggestions lol.

Thanks for the thoughts .

luv n hugz

Dawnx

PS bet they blame the HC

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[Guest guest]

Thanks very much all of you

I will put it to the Dr again about the Lupus without sounding like a

hypchondriac It was the endo that tested for Lyme before giving me the CFS

diagnosis The Dr who did the ana did a list of autoantibody type stuff with it

and thanks for telling me the price of proper diagnosis I know for sure I shall

not be getting that.

My stepdad's wife died of Lupus complications so he knows the horrors of that

disease first hand and it took her ages and ages to get a diagnosis but she

still carried on suffering horribly. one or two of the 'events' she had made me

feel poorly even to hear.

So when the Dr comes back of her leave I shall have to discuss all these things

with her. At the moment on antibiotics feeling like c**p . Lack of iron

feeling like ... well you get the picture, the state of my health and the NHS

euwwwww. Sorry me moaning again. Day 2 on iron, wonder when I will feel a little

stronger sigh.

If i were a dog they would have got rid long ago lol.

I am on 30mg hc, normally over the last year or so that wasn't too bad, I get

anxious on my thryoid s if i dont take it sadly.

Take care my dear people

hugz

Dawnx

[Guest guest]

Hi Dawn/,

I regret to say I am a Lupus sufferer with Lupus nephritis plus very low

adrenals plus Hashi's plus low growth hormone plus major malaborption issue

apart from that I'm fine.

With Lupus you are exhausted and ache all the time like flu which is the

overactive immune system (when you have flu you ache because the immune system

is doing it's stuff) you have other issues too - all the body is affected

because it is virtually arthritis of the blood - and every part is affected with

inflammation.

Not sure about the costs of these tests as I have them every 3 months at the

Lupus clinic I attend in a major London hospital but I do know that GP's are

keen to diagnose Lupus so I am not sure if they would balk at doing these tests.

Mine were negative for ages but then all of a sudden it started to show but I

was actually diagnosed by a kidney biopsy before the blood tests came through

positive as they saw Lupus in the kidney.

I haven'thad time to read all the messages but will tonight to see if I can help

further - so will write again later.

Need to get ready for work - yes I work full time and I am 99% better so let's

see if we can do the same for you !!!

Best wishes,

Mandy

[Guest guest]

With Lupus you are exhausted and ache all the time like flu which is the overactive immune system (when you have flu you ache because the immune system is doing it's stuff) you have other issues too - all the body is affected because it is virtually arthritis of the blood - and every part is affected with inflammation.

Hello Mandy,

Many thanks... this is the most poignant description I have heard for Lupus – arthritis of the blood. And it is very encouraging that you are doing so well ... which kind of treatment are you on for your Lupus?

I don't have any personal experience with Lupus, but it was suggested as something to `rule out' for a good friend of mine and it was her endo who told us that a full rheumatology panel and investigations into the different types of Lupus could run well into thousands of £s and since it all might come to nothing in the end he suggested to switch her from private to NHS – which sounded great and caring in theory, but in practice my friend is now facing one hurdle after another and experiencing what appears to be a sudden loss of interest on all fronts when doing a transition from private onto the slow grinding mills of the NHS - long story....

Not sure about the costs of these tests as I have them every 3 months at the Lupus clinic I attend in a major London hospital but I do know that GP's are keen to diagnose Lupus so I am not sure if they would balk at doing these tests. Mine were negative for ages but then all of a sudden it started to show but I was actually diagnosed by a kidney biopsy before the blood tests came through positive as they saw Lupus in the kidney.

Yes, I agree – doctors are usually helpful and want to diagnose Lupus when there is reasonable suspicion of someone having the disease. So, Dawn, please don't give up the fight before it has even started. From what I could find out through google it seems that those tests are so pricey because there are so many possibilities to eliminate, since Lupus can affect just about any part of the body and there are lots of different antibodies to check – so it's the search for the proverbial needle in a haystack.... but I would imagine that the clue of where to look is in the patient's clinical signs and symptoms (which, of course, is complicated by someone suffering from Hashi's or other conditions on top).

How did they pinpoint yours as `Lupus nephritis', Mandy? Kidney pain, I would imagine, but then you can get kidney probs with the thyroid scenario too; so what made them think "kidneys" in the face of presumably so many other symptoms and in view of persistent negative lab results. That's quite an achievement to my mind. Please tell us more about this Lupus clinic in London... is it private or NHS?

Could I ask a favour, Mandy? If you know, or have copies of all the blood tests they did for you, would you be so kind and email me privately which Lupus related tests were done for you, please (you don't have to give me your results, just the kind of tests that were ordered)....I guess this might be a bit off topic, hence asking for pm. I am collecting Lupus data for my private files.

With best wishes,

[Guest guest]

Awesome Mandy thank you

hugz

dawnx

>

> Need to get ready for work - yes I work full time and I am 99% better so let's

see if we can do the same for you !!!

>

> Best wishes,

>

> Mandy

>

[Guest guest]

//So, Dawn, please don't give up the fight before it has even started.//I won't hun, thanks so much )hugz DawnxPS Just noticed on my journal on real thyroid health that they haven't tested me for iron deficiency like ever? Just the heme in my full blood counts and that is back as low normal again anyway, despite all my problems and my anaemia this time. I suspect anaemia for nearly five years, a long time eh?Problem is if they don't ask the right questions they won't get the answers they need and by denying my thyroid was having problems all this time they have been influenced to ask no relevent questions.

[Guest guest]

Hey Chris

yes i am in the menopause i went in quite early but am now 52. \Tried some

natural hrt both estrogen and progesterone but made me feel worse not better

overall so i stopped it, these hormonal things are so complex aren't they? So i

thought i would make it easier and let the body sort those out > lol

hugz

Dawnx

>

> Hi Dawn

>

> Sorry to hear you're still struggling. Have you looked at other hormone

deficiencies as well (such as sex hormones)?