Hashi/Graves

[Guest guest]

,Pat and Tess

Thankyou so much for your replies, Its hard to know where to start. My GP dosn't

know about these tests,no i havent seen an Endo. I had these tests done with

genova. Thyrogobulin 32.5 ref 0-40 Peroxidase 1000, comments from genova are

Hashimotos and Graves auto antibiodies are significantley elevated. So from that

I assumed i have graves, this is my only diagnosis.

I havent shown these to my GP, last year she said your tests look like your over

active,take the same dose get retested in a month, I am real sure i dont have to

tell you what i went through. I did have to sleep sitting up for the whole of

that month, went back oh yes you really have gone hyper.

Years ago she told me my T3 didnt match my T4, but didn't do anything about it.

I sat there innocent as a babe i knew no better, never drempt of what the

implications of that. The times ihave asked for help pulse a hundred, told

you're stressed.

I though i would walk this part of my journey with Dr P, with no interference

from them. I have felt ill for so many years, with just windows of wellness a

moment a day a couple of weeks. I have no faith or trust in them.

In the last 5yrs i felt like i have been begging for tests, I am now diagnosed

with severe divirticulitus, horseshoe kidney with stones, 40 stones in

gallbladder now removed, I have had a masectomy, B12 injections, anemia. To me

this all should never have happened the answer was right under their nose. You

would think they would believe you when the tests come up positive. Dont be

silly I am STRESSED.

Also my label comes from having 2 stillbirth babies, my daughter had menengitus

once 6yrs and again at 21yrs, my partner died unexpectedly he was 34yrs they

told him he had indigestion go home and take gaviscon. I will stop there cause i

could go on.

I had a hystectomy at 30 yrs,i should have been diagnosed then, I will tell you

having a masectomy was a walk in the park compared to how i feel in the thyroid

madness, thank god i have two beautifull daughters who keep telling me that

there is something wrong, cause sometimes you can buy into the you are STRESSED.

I have cried every day for the last 3 yrs, but i still keep a sense of humor, i

am known as the one part one woman, this is a true story Bruce Forsyth went to a

nursing home an said to one of the residents do you know who iam, she said no

dear,but if you go and see matron she will tell you, I thought that was funny.

so guys if you see a post come up that says matron, will you get in touch and

tell me my name is stevie and i live in Ely lol.

so I am then still not sure about the graves. Its taken so long for me to write

this, lost it 3 time pressing the wrong button.

If it seems i dont get back quick,you will know why, on the other hand i could

just be looking for matron.

thank you so much,i dont feel so alone.

love Stevie

>

> Stevie,

>

> Good to see you haven't let a little thing like the computer stop you... You

don't need to be able to do anything fancy with it, brilliant that you've

managed to get this far...

>

>> >

[Guest guest]

MODERATED TO REMOVE PREVIOUS MESSAGES ALREADY READ. PLEASE DELETE THESE AND

LEAVE JUST A PORTION OF WHAT YOU ARE RESPONDING TO BEFORE CLICKING 'SEND'. LUV -

SHEILA

__________________________________

Hi Stevie,

OMG the GP stories just get worse and worse. First of all HUGS...I

know how you are feeling.

You should have been referred to Endo when you were Hyper....with me

they tested me every 4 wks and after 2nd Hyper result they tested for

antibodies (only TPO at this point) which were positive and I was

referred to Endo ....still Hyper results at this point but results

were coming down. (no meds at this point)

It sounds to me that you could have both Graves and Hashis as you are

describing ME before Thyroidectomy!

I could swing up and down daily just like you are describing...my pulse could be

up at 150 in morning, afternoon 90 evening 120 night

90 through the night 150 and so on.....

I to have severe Diverticular disease and am awaiting colon resection

and although Endo denied it my bowel surgeon agrees with me that it is

all down to Thyroid disease!

I cried every single day as well (hugs again) begged for tests and was

told I was stressed and overanxious by GP`s...that was with a diagnosis, the

vicious circle then starts though as THEY stress you

out by telling you its " just stress " and you fell even worse, palpitations etc

start and hey ho symptoms magnified by 1000.

They make me sooooooooo bloody angry as I`ve said before I really wish

they could even have one day of thyroid disease....bet they wouldn`t

be so damn arrogant then!

How does your eyes look/feel....mine were gritty,had double vision

and they looked as if they were about to pop right out my head when

I was hyper. In fact one time I was waiting outside nurses room for

blood test (just before thyroid storm actually) my whole body was

shaking, sweat was pouring off me, eyes bulging, fidgeting with my

fingers trying to pick at the skin where my nails had fallen of,

wearing only a vest top ( it was about -9 outside) and the guy sitting

across from me said " Is it crack or smack hen don`t worry you`ll get

get your meth soon " to which I replied " I`m effing hyperthyroid not

a bloody junkie " !!!

I can laugh at that now but looking back I can see why he thought I

was lol.

Can you see another GP at your practice?? I really think you need to

get your bloods done again and you need to either have a scan or

antibodies tested to get a diagnosis for Graves. Incidentally on my

first antibodies test which was TPO as well it said Hashimotos or

Graves but you need to get TSI, trab tgab..I can`t remember all the

ones I had as I had blocking ones as well (tbab or trab11 I think)

which you may well have as they fight against each other and its

like a war zone in your head.

Actually if your GP`s are all rubbish go to A & E tell them your symptoms and

history and they`ll do your blood right away. Hyper is

not to be ignored and if your last test was April who knows where

they`re at now and that would give you a diagnosis much quicker. I

never wanted to bother NHSdirect A & E ect but if it wasn`t for them

I`d be dead now with Thyroid Storm.

It what we pay NI for and you are getting nowhere fast with GP`s..

you are suffering and deserve diagnosis and treatment.

BTW I love the matron joke.....and I couldn`t remember my name one

day lol.

Hugs

Love Tess x

I had these tests done with genova. Thyrogobulin 32.5 ref 0-40 Peroxidase 1000,

comments from genova are Hashimotos and Graves auto antibiodies are

significantley elevated. So from that I assumed i have graves, this is my only

diagnosis.

[Guest guest]

…..this is a true story Bruce Forsyth went to anursing home an said to one of the residents do you know who I am, she said nodear, but if you go and see matron she will tell you, I thought that was funny.so guys if you see a post come up that says matron, will you get in touch andtell me my name is stevie and i live in Ely lol.

Hello Stevie,

Thank you for the above… it did put a big – if bitter-sweet - smile on my face….

I am not versed on the Graves/Hashi combo, so can't help you much, but reading your story caused me to well up; so much unnecessary suffering because of incompetent doctors…. It brought back bitter memories about my mothers suffering and subsequent premature death (at 58) - different story, same incompetence… things haven't changed much over the years, it seems.

Well, you are on the right path – put your faith in Dr. Peatfield, he is one of the best there are in this country. I guess you have read his book already? It's a `must read' in my view. You can get it through Amazon:

http://www.amazon.co.uk/gp/product/190514010X/ref=s9_simh_gw_p14_i1?pf_rd_m=A3P5ROKL5A1OLE & pf_rd_s=center-1 & pf_rd_r=02591VBMMXP5GFVNBKKH & pf_rd_t=101 & pf_rd_p=467198433 & pf_rd_i=468294

with best wishes,

[Guest guest]

Hello Tess

THankyou for your reply,Yes i do have all your symtons except i am cold and i

have a funny tightening around my waist get worse after each meal.I relooked at

the tests again and of corse the peroxidase is (TP0AB) and thyrogobulin is

(TgAb), so i am pretty sure i do have both. Silly realy Shelia told me i have

both ,I dont think i wanted to face it after all i have gone through, strange i

feel hypo/hyper just like i have told all the docs, and all they say is well

your TSH is fine so it cant be your thyroid lol.

My daughters say you forgive a doc making a mistake but never for making you

feel small, Thanks again tess

Love and light

Stevie

>

>

> Hi Stevie,

>

> OMG the GP stories just get worse and worse. First of all HUGS...I

> know how you are feeling.

>

[Guest guest]

Hi Stevie,

OMG the GP stories just get worse and worse. First of all HUGS...I

know how you are feeling.

You should have been referred to Endo when you were Hyper....with me

they tested me every 4 wks and after 2nd Hyper result they tested for

antibodies (only TPO at this point) which were positive and I was

referred to Endo ....still Hyper results at this point but results

were coming down. (no meds at this point)

It sounds to me that you could have both Graves and Hashis as you are

describing ME before Thyroidectomy!

I could swing up and down daily just like you are describing...my pulse could be

up at 150 in morning, afternoon 90 evening 120 night

90 through the night 150 and so on.....

I to have severe Diverticular disease and am awaiting colon resection

and although Endo denied it my bowel surgeon agrees with me that it is

all down to Thyroid disease!

I cried every single day as well (hugs again) begged for tests and was

told I was stressed and overanxious by GP`s...that was with a diagnosis, the

vicious circle then starts though as THEY stress you

out by telling you its " just stress " and you fell even worse, palpitations etc

start and hey ho symptoms magnified by 1000.

They make me sooooooooo bloody angry as I`ve said before I really wish

they could even have one day of thyroid disease....bet they wouldn`t

be so damn arrogant then!

How does your eyes look/feel....mine were gritty,had double vision

and they looked as if they were about to pop right out my head when

I was hyper. In fact one time I was waiting outside nurses room for

blood test (just before thyroid storm actually) my whole body was

shaking, sweat was pouring off me, eyes bulging, fidgeting with my

fingers trying to pick at the skin where my nails had fallen of,

wearing only a vest top ( it was about -9 outside) and the guy sitting

across from me said " Is it crack or smack hen don`t worry you`ll get

get your meth soon " to which I replied " I`m effing hyperthyroid not

a bloody junkie " !!!

I can laugh at that now but looking back I can see why he thought I

was lol.

Can you see another GP at your practice?? I really think you need to

get your bloods done again and you need to either have a scan or

antibodies tested to get a diagnosis for Graves. Incidentally on my

first antibodies test which was TPO as well it said Hashimotos or

Graves but you need to get TSI, trab tgab..I can`t remember all the

ones I had as I had blocking ones as well (tbab or trab11 I think)

which you may well have as they fight against each other and its

like a war zone in your head.

Actually if your GP`s are all rubbish go to A & E tell them your symptoms and

history and they`ll do your blood right away. Hyper is

not to be ignored and if your last test was April who knows where

they`re at now and that would give you a diagnosis much quicker. I

never wanted to bother NHSdirect A & E ect but if it wasn`t for them

I`d be dead now with Thyroid Storm.

It what we pay NI for and you are getting nowhere fast with GP`s..

you are suffering and deserve diagnosis and treatment.

BTW I love the matron joke.....and I couldn`t remember my name one

day lol.

Hugs

Love Tess x

>

> ,Pat and Tess

>

> Thankyou so much for your replies, Its hard to know where to start. My GP

dosn't know about these tests,no i havent seen an Endo. I had these tests done

with genova. Thyrogobulin 32.5 ref 0-40 Peroxidase 1000, comments from genova

are Hashimotos and Graves auto antibiodies are significantley elevated. So from

that I assumed i have graves, this is my only diagnosis.

>

[Guest guest]

Stevie,

I forgot to say that...me too lol I got cold (like it was in my bones)

as well as the sweats.

I also get the tightening (still) after I eat but I get in the left

hand side just under my ribs and I`ve been told that its the

Diverticular disease.

This site saved me I really would have been in a straight jacket if

I hadn`t found TPA.

I wonder too how many people we would find both Hyper and Hypo that

have been told they are ok/not ok because of TSH!

WHY oh why can`t doctors get it????

Love Tess

>

>

> Hello Tess

> THankyou for your reply,Yes i do have all your symtons except i am cold and i

have a funny tightening around my waist get worse after each meal.> >

>

[Guest guest]

HI Tess

Yeah its a horrible sensation, feels like my insides are in a straight jacket, i

feel like ineed thyroid med for that but not for the rest of me,I am sure you

know what i mean nothing goings any wear, i am still sure you no whati mean lol.

Also that cold thing is c..p i still have to put the heating on. Feels like i

have no thermerstat inside me

I do understand about the site, its like having the samaritons on tap, I think

sheila and her team are amazing. If ihadnt joined, had the full blood panel

done, i would still be sitting here wondering what the hell was wrong, of course

noing all the time it couldnt possibly my thyroid cause my TSH is fine Doc said,

you just gotta laugh sometimes.

At least now i do know,

I think it will be a long time before the docs do catch up.

I am so grateful for the knowledge for my daughters, hopefuly it will be a

different future for them.

Thanks tess (hugs)

love

Stevie

>

> Stevie,

>

> I forgot to say that...me too lol I got cold (like it was in my bones)

>

[Guest guest]

Yep Stevie I do know what you mean about nothing going anywhere lol

but I get a mixture of movicol, fybogel,lactulose, picolax, klean prep

:-) I have to alternate every few weeks ......variety being the spice

of life and all that.

I thought when my thyroid was fixed my bowel would be too but been

told its iscemic {dead) in parts with all the bouts of Diverticulitis.

I have two daughters as well but as you say at least we have knowledge

now though please God they don`t get this.

My youngest daughter said to me recently " Mum if I get Hyperthyroid

and crazy like you were......shoot me " Ouch!!!

Love Tess

> >

> > Stevie,

> >

> > I forgot to say that...me too lol I got cold (like it was in my bones)

> >

>

[Guest guest]

hi stevie ...god what a horrible time you've had and i too send a big hug

because we all need that i think

i'm a bit confused and may have missed something vital but from reading the link

below it seems you need 3 lots of autoantibodies to be graves/hashis ...last

september i had nearly 3 thousand antitg and 813 antitpo and when i saw dr p in

october i mentioned the high numbers and he said " maybe you have another

autoimmune disease " but while i mentally acknowledged what he had said, i didn't

ask for further explanation because ther was so much to cover in the appointment

and at the back of my mind i thought i could ask on a follow up call, due to my

life kinda falling apart though i have not made a follow up yet!

http://graves.medshelf.org/Lab_Tests.

The TSI Test

TSI, which stands for thyroid stimulating immunoglobulin, is the antibody

responsible for hyperthyroidism in Graves’ disease. TSI are also known as

stimulating TSH receptor antibodies or stimulating thyrotropin receptor

antibodies because of their ability to stimulate the TSH receptor on thyroid

cells. Acting in place of TSH, these antibodies stimulate thyroid cells to

produce excess thyroid hormone. TSI also contribute to the related eye disease,

Graves’ ophthalmopathy. TSI is used to diagnose Graves’ disease, to monitor

response to anti-thyroid drugs and to helping predicting remission. While the

normal range is <130% activity, individuals who are normal do not produce TSI

and have levels <2% activity. Individuals with levels between 2 and 125 %, which

indicates thyroid autoimmunity, do not generally develop symptoms of

hyperthyroidism until levels rise. Therefore, levels much lower than 125% are

necessary to predict complete remission. Levels, which are close to 100%

activity generally rise when patients stop taking anti-thyroid drugs. Ideally,

levels would fall to at least 20% before anti-thyroid drugs are safely

withdrawn. The reference range is <130% activity or an index of <1.3 for tests

that measure the increased activity caused by adding patient serum to a test

solution of thyroid cells.

trish

>I have just checked tests again and the peroxide is the (TP0AB) and the

thyrogoblin is (TgAB) so i must have both Sheila did say i have maybe i didnt

want to face it not that one.

[Guest guest]

Hello Trish,

Thankyou so much for for getting in touch, Its ment so much every one support, I

live on my own as well, I dont feel so alone with it all now, I cant believe i

have walked around so long like this. Glad i have been brave enough to get on

the computer.

Thankyou for the information I realy appreciate it

Love Stevie

--- In thyroid treatment , " Trish " <fielddot@...> wr

>

>

> hi stevie ...god what a horrible time you've had and i too send a big hug

because we all need that i think

>

> >

> http://graves.medshelf.org/Lab_Tests.

>

>

> >

[Guest guest]

Thanks Stevie :-)

Sorry just getting back to you, I was in the back garden all day

pottering about in the lovely sunshine.

I would write a letter to that GP so its on your files, I have an

appointment with head GP and practice manager tomorrow as I complained

after the thyroid storm fiasco. I was meant to see them ages ago but

was too ill, they were probably hoping I`d forget about it...no chance

lol.

Don`t worry about thyroid storm I don`t think you are anywhere near

that. I can`t remember much about it now actually, think I`ve gave

myself a mental block lol but I wasn`t cold I was burning up.

I was told to aim for FT4 about 20 or thereabouts (range 9-21) and Ft3

round about the 6 (2.6-6.2) or even a bit higher if it makes me feel ok.

I was on two diff kinds of antibiotics six times last year for Diverticulitis

:-(

I have an appointment to see my bowel surgeon this Thursday but no

date for op yet as I have transient vocal chord paralysis after op

and it seems it can cause problems with anaesthetic (spelling?) but

I`m hoping to maybe get a date soon as I`m not quite as husky now.

Lol my daughters friend told me I sound sexy ha ha.

I`m hoping he`ll be able to tell me more about this high thyroglobulin

thing (he`s my hero and tells me everything or finds out and phones me,he also

now tests all his patients thyroid function just in case

:-) and a jumped up GP had the cheek after marking my blood result

normal to say * who is managing your thyroid? A bowel surgeon " told

him yeah as I`d be dead with the way he was managing it....Oh I`m

getting riled up lol! :-)

Love Tess

PS: Yes do tell her to stick them where the sun don`t shine :-)

>

> Hi Tess,

> Thankyou for the link, you know tess, before i could paticipate in the goup,

i followed your story, it moved me so much that a human being could go through

so much,i always looked for your post and so glad that the op was a success.

> > >

> >

>

[Guest guest]

Hi Peary,

I think you need two or three Hyper results before they test Trab Tsi

Tgab ect. My GP only tested me for TPO at first, it was Endo who did

the other antibody testing on my first visit to her. When I first found TPA I

was convinced I`d been wrongly diagnosed with Graves as I

thought I`d only had the TPO test.

It was after I asked for a second opinion that I got the results of my

Graves antibodies and she did more antibody tests at that point and

lucky old me had blocking ones as well as well as Hashis and Graves.

Then when I had a scan before op I had nodules to boot lol.

Maybe its only endos who test them I don`t know but maybe you could get it done

privately or it could be that your GP will test them if

you ask??

TSH is always suppressed/undectable in Graves and although FT4 can

go up its mostly T3 Toxicosis, the highest my TSH has been in two

years is 0.92 and that was when my FT4 was at 7 (9-21).

Its still undectable now after op though I`m on T3 now..I put a link

on last week about it..think it was " TSH suppression in Graves

disease " .........Hope you feel better soon and fingers crossed that

your GP will test for you,

Love Tess

>

>

>

> >

>

> I cannot understand why these Graves antibodies are not routinely tested

> by our GPs along side those for Hashimoto's.It is not even considered in

> most cases because they are interpreted as being two 'separate'

> diseases and in fact they're not.They are on the same disease

> spectrum,just oppositite ends and it is certainly possible that one can

> test positive for BOTH sets of antibodies.I wonder how many GPs are

> aware of this.I,ll take a bet that at my surgery NONE!

>

> I,m sure Dr Peatfield will help you understand things better and I am

> willing you to get better soon.You deserve it.

>

> Peary

>

[Guest guest]

>> Hello Peary,> So many people have sent me posts, I am so grateful, i feel so supported, > you said some lovley things thankyou, as much as my story is a difficult one and what might appear a tradegy, have now become my gifts, i am a reflexologist, and their is no one i cannot reach,weather it be a loss of a child , having cancer or losing the love of your life,and so on, i have done them all, i put bach remidies and natural healing with it to, its my passion, and i dont want to give it up because of this, thats what i hoped when you said i would be rewarded, that i would heal my self. or managed i dont mind they just words mean the same, its about feeling well, so bless you for that, hope this is not to full on.> If you ever look for one, look for one that works from the heart, not in a salon may works from home, that gives you time dosent charge stupid prices you will know. It can be a wonderful experiance it bring the body to what we call homeostasis which means perfect balance, the body is so relaxed, thats when it can heal. I have seen amazing things happen,> I truley hope we all find this, i believe we will, we didnt find the tpa and Dr p for nothing they are part of our journey. Thankyou once again.> love and light > Stevie >Stevie,I,m glad you feel supported and its great your work as a Reflexologist is giving you a purpose in life to help others.

This is ironic because last night I said to my partner can you please massage my feet or 'pretend' you are a Reflexologist LOL! He reluctantly agreed and I got a begrudging two minute toe pull...!

Best wishes,

Peary

[Guest guest]

>> Hi Peary,> > I think you need two or three Hyper results before they test Trab Tsi> Tgab ect. My GP only tested me for TPO at first, it was Endo who did> the other antibody testing on my first visit to her. When I first found TPA I was convinced I`d been wrongly diagnosed with Graves as I> thought I`d only had the TPO test.> It was after I asked for a second opinion that I got the results of my> Graves antibodies and she did more antibody tests at that point and> lucky old me had blocking ones as well as well as Hashis and Graves.> Then when I had a scan before op I had nodules to boot lol.> > Maybe its only endos who test them I don`t know but maybe you could get it done privately or it could be that your GP will test them if > you ask?? > TSH is always suppressed/undectable in Graves and although FT4 can> go up its mostly T3 Toxicosis, the highest my TSH has been in two> years is 0.92 and that was when my FT4 was at 7 (9-21).> Its still undectable now after op though I`m on T3 now..I put a link> on last week about it..think it was "TSH suppression in Graves disease".........Hope you feel better soon and fingers crossed that> your GP will test for you,Hi Tess,

Yes that,s what I thought.That they will usually only test the thyroid 'stimulating' antibodies if you are showing 'hyper' on the blood tests.But it really is ridiculous because as I understand it the anti TPO and anti thyroglobulin are also present in Graves.However these two antibodies are mainly used to clinch the diagnosis of Hashimoto's.Complicated stuff eh!!!

How are you doing on the T3 Tess? I,ve just had to come off my miniscule dose of 12.5mcg of T3 as I feel that 'toxic' way again.Urgh..

Peary

[Guest guest]

Hello Sheila and everyone,

Thankyou for your concern, I decided to go to the doc this morning.

I managed to get one that has helped me in the past.Concerned he wouldnt accept

my genova tests.

Talk about catch them off gard, in some ways felt like taking the lamb to the

slaughter. I just said what do think of this test , he was so bemused. in the

end he had to admit he didnt understand them, I asked what do think to the TPOAB

and TgAb is that hasimotos and graves running together,He said thats not

possible you cant have both, i said so did i,but after doing my home work,i know

for a fact you can.(felt like you were all sitting there with me all this new

language).

Then i produced Dr P diagnosis paper, he kept looking at one then the other, i

could see he felt out of his depth, i knew more than he did and he knew it. He

was honest i dont understand the test or about the conversion. Dp p had put

toxic T4 proberley will need T3.

So he was on the computer, he looked at me and said you now have an app at

Addenbrookes hosital for an Endeo 8 july because I think you should see someone.

Bloods to be done in the morning, interestingly he couldnt get the ft3 accepted

on the computer or the thyrogobulin.

He asked what got me there to have these blood tests done. I said 3ys ago you

sent me to a heart dr, because i had a pulse of 100, i said it still is and

thats long enough for anyone to walk round like that also previous gp told me

along time ago that my T4 and T3 didnt match.

So their we are everyone mixed feelings. I have thought about it and it makes no

difference i can still work with this with Dr P, its not one or the other,

right.

And because of you i sat their empowerd with knowledge and didnt feel small.

Oh he never examined me Grinnnnnnnn. He didnt say i was stressed Grinnnnnnn.

Thankyou everyone

Love Stevie

>

>

[Guest guest]

Hi Tess,

Glad you were gettting you vit D yesterday, thankyou for the info,

I have been thinking about your thyrogobulin, my friend had her thyroid out this

year in March for different reasons to you, this is just a thought but i do know

when they take it out there is still some thyroid cell tissue left behind, i

thought may be just enough to keep it up for a while, you are still recovering

your body has been though a lot. I think it just needs time. (hugs)

Love Stevie

> >

> > Hi Tess,

> > Thankyou for the link, you know tess, before i could paticipate in the

goup, i followed your story, it moved me so much that a human being could go

through so much,i always looked for your post and so glad that the op was a

success.

> > > >

> > >

> >

>

[Guest guest]

>

> Thanks for that Stevie, did your friend have thyroid cancer? Do

> you know if she also had radioactive iodine after operation??

>> > >>

> Hi Tess,

> > > > Thankyou for the link, you know tess, before i could paticipate in the

goup, i followed your story, it moved me so much that a human being could go

through so much,i always looked for your post and so glad that the op was a

success.

[Guest guest]

>> Hi Peary,> > I`m doing great on T3 though I was scared to take it at first after all my Hyper escapades.....no symptoms of hyper at all.> > Yeah the whole thyroid thing is so complicated...Are you still feeling> toxic? Hugs> > Love Tess

Hello Tess,

Can I ask how you are dosing your T3? Whether you are splitting it twice/thrice etc?

I,m not sure anymore whether I,m 'toxic'.I came off everything a few days ago but still feel really awful.My voice I notice is definitely deepening and raspy and my gland feels enlarged.I guess this points to me needing to get back on something and soon.But what? God,I hate this.

Regards Peary

[Guest guest]

Hi Peary,

I split in 20mg am then 20 again about 2or 3pm. I know its awful trying to work

it all out. What about a scan to see if you have

nodules...I had them as well.

I just remembered years ago I used to get really raspy/hoarse and

they always said it was laryngitis but I never had any pain etc....makes me

wonder now just how long I had thyroid problems for.

I`ve had lump things at the bottom of my legs for years as well and

docs used to say they didn`t know what it was, if it wasn`t painful

forget it.........more came up last year and it turns out its Pretibial

Myexedema.......diagnosed by endo (who ran to get other endo

and 5/6 students to see it) on would you believe...right in front of

me......GOOGLE IMAGES!!!

What does your doc say about it...

Keep your chin up..hugs

Love Tess

>

>

>

> ---

[Guest guest]

OMG Stevie - your thyroid results are terrible and show that you

are, right now, very hypothyroid - probably because you have not taken thyroid

hormone for 9 days, but no TSH could rise to 42.40 in such a short time.

Obviously the dose of thyroxine you have been taking has been far too low, and

it is obviously not converting to the active hormone T3, as that is below the

bottom of the reference range. Your free T4 is also way below the bottom of the

reference range.

Ferritin is also still too low. Are you eating foods rich in

iron and taking high doses of vitamin C (5/6000mgs) to help with iron

absorption?

It doesn't make sense to me either Stevie and I wish I was more

qualified to be able to give you some reasons why this is happening, apart from

your high antibodies for Graves and for Hashimoto's.

Hopefully, there is somebody else who can throw some light on

this.

Luv - Sheila

Hello Sheila,

Just got some of my test results over the phone.

TSH 42.40

serum FT 4 7.9 ref (10-19.8)

Ft3 2.6 ref (3.5-6.5)

antibiodies not back yet

ferrittin 29.4 was 25 2mths on spartone 3 every night with 1000 vit c

serum C reactive 5 (0-6)

This was on 6 weeks of 75mcg thyroxine, and none for 9days. I say 6 weeks, because

before i never stopped taking then just up and down with 50 or 75mcg.

I dont see how i can have a TSH result like that for stopping nine days.

I dont understand in stopping that my pulse rate never went down, or that

starting again can bring it back slightley.

I sarted back on 50mcg didnt know what else to do.

I did the urine sent off on tues, so am waiting for them.

compared to the genova tests that i posted massive difference, on those, which

showed i was not converting.

I am concerned although i feel marginly better that the build up will start

again.

Talk about cant live wth the thyroxine and cant live without it.

When i saw asecialist 3yrs ago got my ateries checked got the okay. I asked him

beacause i had a pulse of a 100, should i drop thyroxine to 100 from 125 he aid

if it was that it would take 6 weeks. It took every day of it after that i had

to change every 3mths, untill 18mth ago when i went overactive their has been

no dose. Then i read Dr P book and started all vitamins and salt and got my first

6 weeks of a regular dose of 75.

Also noticed your posting of screat, At times my ESR levals are sometimes high

60 plus ref (0 15) doc puts high but normal for you even my head burns, did

make me wonder. I did day to her i hurt everywhere, her answer was you just

have a low imune.

Since havin my gall bldder out i cant take fat, I miss my omega 3 which helped

for inflamation, also noticed liver was where there the bulk of the coversion

goes on for T3.

I cant make sense of any of this at all, clearly I need to take thyroxnine but

why so much trouble, I have orderd cytomel just in case doctor p thinks that is

what i need, also have efra not tried it though as cantains T4.

None of this makes any sense to me.

Love Stevie

>

> Hello Sheila,

> I wonder if you could advise me as to my next step, my temp 36.5 > >

> >

>

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18:35:00

[Guest guest]

Hello Sheila,

Hopefully Monday the antibiodies test will be back, and i will get a print off

and post again, She cant have read it correct, to me even the T3 shouldnt have

dropped below the ref range in 9 days.

Thanks to you, the practise nurse put hyper like you told me to get the T3 and

it worked.

Yes i do take 5/6ooo vit c a day, Dr P was impressed with the vits i am taking

now added keifer near to cave man diet now. Ferritin was 10, cant take ferrous

because of divaticulius, did see a post about blue bonnet will look into that.

makes you wonder if it works in reverse, no T3 , you will struggle with iron.

I have got so i hate taking this thyroxine now , the way it tightens al my

insides up, just gets worse throughout the day. Each day i take the tighter it

will get, the more hyper i will feel, its just like the thyroxine is going

nowhere, instead of relaxing everything it tightens it.

Maybe i will get a chance to talk to Dr P this week, from the sounds of it he

does sound booked up.

Also no one can say it was amour or T3, so they cant point the finger their.

thanks again Sheils

Love Stevie

>

> OMG Stevie - your thyroid results are terrible and show that you are, right

[Guest guest]

Good God Stevie you must be knackered with those results!!! What did doctor say

about them? Was it April you last got tested...Jeez what a

jump in TSH. Hugs :-)

One good thing (though none of its good) is you won`t have Graves with

a TSH like that, its undectable in Graves.

Maybe you've had a Hashis attack and thats what made you feel Hyper..God knows?

Its never straight forward is it.

Did your GP call you with results....hope they get you sorted soon.

Love Tess

>

> Hello Sheila,

> Hopefully Monday the antibiodies test will be back, and i will get

>

[Guest guest]

Hi Stevie

Sheila has drawn my attention to your case.

First of all,I think it's very positive that your GP has referred you to

endocrinology.

For your reference and information,from the symptoms that you have described and

the thyroid test results in April and more recently I believe that you may have

Hashitoxicosis-a hyperthyroid state which may happen transiently in patients

with high titres of anti TPO who unfortunately may experience a swing back and

forth between hypothyroidism and hyperthyroidism.In those patients ,a

comprehensive thyroid antibody profile usually reveals-apart from positive TPO

and/or TGB autoantibodies-stimulating TSH receptor auto antibodies and TSH

receptor inhibiting antibodies.

In essence,what happens is the release of T4 during the antibody-mediated

destruction of the thyroid gland coupled with the stimulating effect of

stimulating auto antibodies on the thyroid and the subsequent over production of

T4 lead to overall increased tissue exposure to thyroid hormones and clinical

hyper- manifestations such as tachycardia,feeling hot,sweating ,anxiety etc.

The main problem in these cases is the adjustment of thyroid replacement which

needs careful monitoring of symptoms and several " trial and error " attempts .

Eventually,in most cases,with advanced disease there are less hyper-bouts and

medication adjustment gets easier and more manageable.In the rare cases that

this problem may persist the endocrine specialist may discuss with you

thyroidectomy or ablation to relieve symptoms.

If hyperthyroid symptoms of the cardiovascular system are very severe

the doctor can offer drugs like b-blockers(propranolol) to reduce heart rate and

cardiac strain.This may also reduce anxiety.Attention is also given to fluid

balance to avoid dehydration in case of a high temperature and /or any

diarrhoea.

From the functional medicine point of view,I would look out for any causes that

attenuate your immune system like latent infections (gut is notorious for this)

and/or atypical infections like mycoplasma,EBV etc ;a clue might be the elevated

ESR though not very specific( I would be testing for more markers of

inflammation).

Nutritional support targeted at " weak " individual areas like a low ferritin

state in your case is of utmost importance;the inability to replenish your iron

reserves points towards either ongoing iron loss(check for anaemia,any blood

loss??) or decreased absorption(again a comprehensive stool analysis would

provide clues about potential lack of particular digestive enzymes etc).

Hormonal balance is very important for optimal immune function:a hypoadrenal

state should be diagnosed with 24 hr urinary steroid measurement and amended

with an appropriate dose of hydrocortisone and abnormal female reproductive

hormone levels(with emphasis on progesterone)diagnosed and restored.

You mention a cholecystectomy and subsequent inability to digest all fat

including omega-3s;this needs further assessment and actions directed at

restoring fat digestion/absorption and utilization as it comes into play in the

" dance of hormones " .

Thyrotoxic symptoms can be alleviated -if they are mild and there is no need

for urgent drug administration-with PABA(a vitamin belonging to B complex) and

L-carnitine.

I hope the above information helps a bit;it is general information only as there

is huge inter-patient variation and nothing in medicine can replace a medical

consultation with all its aspects of previous medical history taking and

physical exam followed by targeted laboratory testing.

My very best wishes

Theodora

>

> Hi everyone, I am new to the forum and to the computer, My name is Stevie and

diagnosed hyot 10yrs ago,i have been following the tpa to learn as much as i

could, havent joined in challenged by the computer,That said I think your

amazing and so very glad your there, thankyou Shelia for talking to me the other

day. Through the tpa i had bloods done and booked an app to see Dr P 17 May,

what a lovley man, He told me i was toxic t4 and i started his diary,I cannot

remember talking to him about the graves. I seem to have hit a brick wall,

> I havent taken any thyroxine for 6 days my pulse is a 100 the highest its

been is 120 although the last few days not above a 100 ,spacey tired brainfog

awfull eyesight feel queasy, I am taking all the vitamins and 2 NA. My blood

results .

> TSH 3.08 ref 0.-4.0

> T4 157 ref 58-154

> FT3 5.54 ref 3.4-6.0

> Throgobulin 32.5 ref 0-40

> Peroxidase 1000 ref 0.35

> These test were taken 24 april saw Dr P 17 May its 18 June now are they

relavent. I remember Tess saying its pretty hopeless when you have Hasi/graves.

My challenge is am i toxic or in graves, is hashi/graves treatable without the

hospital route. I wonder what Dr Peatfield would say. Maybe some of you guys

know with all your expereance. Thankyou stevie

>

[Guest guest]

Hi Tess,

No the Doc didn't ring,i phoned the surgery. surely that tsh cant be right,

maybe she didn't read it correct. Hopefully the antibodies will be back Monday,

i will ask for a print off.

I see my bowel guy on Monday, thought i might print off some of you stuff, I

think your bloody amazing what you have been through, just never know might help

not just me but a lot of others as well. We can only but keep trying.

Tess is this a suppressed result, last year i was going hyper, she made me take

that same dose for 2 month to prove it. silly ***

TSH 0.06 ref (0.36-5.5) 01.04.2009

Free T4 24.4 ref (11.5-22.7)

I know i had 2 done not sure if this is the first or the second.

I will be seeing Endeo 8 July, first time, I worry about how incompetent they

can be, any suggestions what i can go armed with, apart from a couple of hand

grenades lol.

ANYONE been to Addenbrookes and seen an Endeo, that you were pleased

I would be grateful if you would use my email and let me know their name.

Funny that when i got my app through, no name on it so that means any body whose

free. Great

I am going to ask the surgery for all my thyroid results, see whats been going

on, bet i will be flavour of the month.

PEARY

If you read this, i loved that bit on your post, It puts me in a difficult

position when their is etc. Wrote that down for the future,

Thankyou

Good job i dont live near D P i would have moved in with him and declared him

matron.lol

Hope your feeling good Tess.

Love Stevie

Geeze I have only just found the spell check, you know what they say, little

things an all lol

>

>

> Good God Stevie you must be knackered with those results!!! What did doctor

say about them? Was it April you last got tested...Jeez what a

>

[Guest guest]

Stevie - did you see Dr Theodora's response to your questions on

the Forum?

Luv - Sheila

Tess is this a suppressed result, last year i was going hyper, she made me take

that same dose for 2 month to prove it. silly ***

TSH 0.06 ref (0.36-5.5) 01.04.2009

Free T4 24.4 ref (11.5-22.7)

I know i had 2 done not sure if this is the first or the second.

I will be seeing Endeo 8 July, first time, I worry about how incompetent they

can be, any suggestions what i can go armed with, apart from a couple of hand

grenades lol.