Getting diagnosed

[Guest guest]

here goes. LOL I had not felt good for about 2 yrs. Small seizures,

fatigue, joint pain, nausea. My dr ran all the usual tests & found nothing.

Sent me to a psychologist who tried biofeedback to lower the stress. All

that did was put me to sleep!! I cut back on work, tried resting more,did

not help. I went to another dr, an internist, same story. Nothing wrong

except stress. Then they found occult blood & casts in my urine. Sent me to

a nephrologist who said glomerularnephritis, but nothing to worry about (?)

Finally, one morning, I was so weak I couldn't get outof bed. Dr admitted me

to hospital with the flu. On the 2nd day in the hospital I woke up looking

like a jack-o-lantern. (it was Oct 31) My liver enzymes were so high they

couldn't do an accurate measurement. Sent me to University of Mich hospital

to gastroenterologist. Had liver biopsy, also scoped me & removed 3 stones

from common duct. Meanwhile my liver failure kept getting worse. Talked

about transplant. (scarey!!) Decided to try steroids.(Duh!) Had an almost

immediate response. They STILL said I had HVB, since I was a nurse & was

probably exposed to it. It took 10 yrs & 3 liver biopsies for the dr to

decide it was AIH. One of my drs tried interferon, which almost killed me

with the side effects. Now this auto-immune thing has affected my legs,

kidneys, brain, nerves- not to mention the side effects of the prednisone.

Sorry to be so long winded, but you asked for it. LOL ne

>

>

>Hi all,

>

>How long did it take for you to get a diagnosis on the condition/s that you

>have? What did you have to put up with along the way? How many

>practitioners did you have to see? How did this make you feel? Care to

>share your story?

>

>Love Aisha.

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hmm, I hope that this was to everybody. I wanted to answer anyway. hehe

hmm how long. Gosh. I had diabetes only about 1/2 a year when they figured that out. Ive had PTSD and Depression since I was about 8 or 9 and I had to put up with alot of crap along the way. So many shrinks. Different types, different styles. Suicide attempts. Loneliness. Nobody understood, untill i ended up at the local looney bin. Even then my parents said, " You need to get out more " . " You need to stop dwelling on the past " . " Maybe you just think about your problems too much " . And so on.

So now ive learned to pretend. Pretend im " Normal " pretend im happy and well adjusted. But I takes alot of effort and energy to pretend all the time when all i want to do is break down and cry.

Now im sad that im fat. I told my husband when i reach 300lbs i would kill myself. Ive been fighting all my life with my weight. Im at 250 now heaviest ive ever been. Ive tried all the diets, ive tried to exercise,( it leaves me in so much pain and agony i sometimes cant sleep) and i feel soo ashamed of my body i dont really want to be out with other people. I try not to leave the house if i dont have to or really really want to.

I feel my life slipping away and im only 25. Sometimes i wonder when it will all go away.

Well sorry for the long note. Im not doing well today.

Melinda

Getting Diagnosed

Hi all,

How long did it take for you to get a diagnosis on the condition/s that you have? What did you have to put up with along the way? How many practitioners did you have to see? How did this make you feel? Care to share your story?

Love Aisha.

The Being Sick CommunityChat RoomDaily Chat at # on IRC DALnethttp://www.elderwyn.com/members/chat.htmlMemorial Pagehttp://www.elderwyn.com/members/inlovingmemory.htmlMembers Lounge*FREE counselling via email*Daily Horoscopes*FREE psychic/tarot readings via email*Daily cartoons*Medical Resources and more....http://www.elderwyn.com/members Members Profiles, locations and birthdaysMessage Archivesmessages/Upload your PictureTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go. " - Pueblo Prayer

[Guest guest]

Hehe, i had 4 Yeast infections in a row. Kinda tipped them off.

we just had to do a blood test and from the results i was labled a Diabetic.

Melinda

Re: Getting Diagnosed

" I had diabetes only about 1/2 a year when they figured that out. "

What did you have to go through to get diagnosed? Were you sick? What made you see a doctor?

Anyone else got a story about being diagnosed?

xox A.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaThe Being Sick CommunityChat RoomDaily Chat at # on IRC DALnethttp://www.elderwyn.com/members/chat.htmlMemorial Pagehttp://www.elderwyn.com/members/inlovingmemory.htmlMembers Lounge*FREE counselling via email*Daily Horoscopes*FREE psychic/tarot readings via email*Daily cartoons*Medical Resources and more....http://www.elderwyn.com/members Members Profiles, locations and birthdaysMessage Archivesmessages/Upload your PictureTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go. " - Pueblo Prayer

[Guest guest]

oh gosh so many questions, hmm

yes abused from age 5 or so to 13 or so. Sexually by my Brother in law and my baby sitters son. ( they didnt know each other)

The diagnosis was thru my current shrink. She had to give me a " Label " so that i could apply for disability.

On different styles of shrinks, well lets see, i went to a Christain counselor. No offense to anybody but i dont think this was the way for me to go. She was a nasty old lady who handed me a bible and said, read this and pray and you'll feel better. Well at 13 i dont think thats what i needed. I saw her 2 times and refused to return. After that i had a couple of women shrinks, all of different back grounds and different educations. Some Psycologist, some Counselors.

The one i see now is a Licenced Social Worker at the Christian Counseling center. hehe, no she is not pushy even though her husband is a minister hehe. We have alot of religious decussions though. But she is the best so far. And even though i have to pay out of pocket ( she doesnt take my insurance) i dont care... I refuse to start over after i have found someone that works for me.

Oh gosh sorry to ramble on so long.

Melinda

Re: Getting Diagnosed

" Ive had PTSD and Depression since I was about 8 or 9 and I had to put up with alot of crap along the way. So many shrinks. Different types, different styles. "

Post Traumatic Stress Disorder - from what hon? You may have said, sorry but I've forgotten. Since you were 8 or 9? Shit. OK So I'm suspecting abuse? Can you tell us about these shrinks? What you had to go through with the different styles and types? Are you on anti-depressants?

Seems so many people here are affected by some sort of Traumatic Stress. Thats really a scary percentage. You are all so brave. I admire you all so much for fighting on and never giving up.

How do you all cope and did you find that have a label for it (as in a diagnosis of PTSS or PTSD) helped?

Love Aisha.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaThe Being Sick CommunityChat RoomDaily Chat at # on IRC DALnethttp://www.elderwyn.com/members/chat.htmlMemorial Pagehttp://www.elderwyn.com/members/inlovingmemory.htmlMembers Lounge*FREE counselling via email*Daily Horoscopes*FREE psychic/tarot readings via email*Daily cartoons*Medical Resources and more....http://www.elderwyn.com/members Members Profiles, locations and birthdaysMessage Archivesmessages/Upload your PictureTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go. " - Pueblo Prayer

[Guest guest]

I have found that social workers are the best psychotherapists. Has anyone else had this experience? Psychologists are too clinical for me and seem somewhat detached and cold. Psychiatrists can be good, if they aren't too medication oriented.

Lee

Sprague <mydragon@...> wrote:

oh gosh so many questions, hmm

yes abused from age 5 or so to 13 or so. Sexually by my Brother in law and my baby sitters son. ( they didnt know each other)

The diagnosis was thru my current shrink. She had to give me a "Label" so that i could apply for disability.

On different styles of shrinks, well lets see, i went to a Christain counselor. No offense to anybody but i dont think this was the way for me to go. She was a nasty old lady who handed me a bible and said, read this and pray and you'll feel better. Well at 13 i dont think thats what i needed. I saw her 2 times and refused to return. After that i had a couple of women shrinks, all of different back grounds and different educations. Some Psycologist, some Counselors.

The one i see now is a Licenced Social Worker at the Christian Counseling center. hehe, no she is not pushy even though her husband is a minister hehe. We have alot of religious decussions though. But she is the best so far. And even though i have to pay out of pocket ( she doesnt take my insurance) i dont care... I refuse to start over after i have found someone that works for me.

Oh gosh sorry to ramble on so long.

Melinda

Re: Getting Diagnosed

"Ive had PTSD and Depression since I was about 8 or 9 and I had to put up with alot of crap along the way. So many shrinks. Different types, different styles."

Post Traumatic Stress Disorder - from what hon? You may have said, sorry but I've forgotten. Since you were 8 or 9? Shit. OK So I'm suspecting abuse? Can you tell us about these shrinks? What you had to go through with the different styles and types? Are you on anti-depressants?

Seems so many people here are affected by some sort of Traumatic Stress. Thats really a scary percentage. You are all so brave. I admire you all so much for fighting on and never giving up.

How do you all cope and did you find that have a label for it (as in a diagnosis of PTSS or PTSD) helped?

Love Aisha.

*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Believe that there's a light at the end of the tunnel.Believe that you may be that light for someone else.- Kobi Yamada*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*=*Aisha ElderwynICQ 55461955aisha@...http://www.elderwyn.com/aishaThe Being Sick CommunityChat RoomDaily Chat at # on IRC DALnethttp://www.elderwyn.com/members/chat.htmlMemorial Pagehttp://www.elderwyn.com/members/inlovingmemory.htmlMembers Lounge*FREE counselling via email*Daily Horoscopes*FREE psychic/tarot readings via email*Daily cartoons*Medical Resources and more....http://www.elderwyn.com/members Members Profiles, locations and birthdaysMessage Archivesmessages/Upload your PictureTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo PrayerThe Being Sick CommunityChat RoomDaily Chat at # on IRC DALnethttp://www.elderwyn.com/members/chat.htmlMemorial Pagehttp://www.elderwyn.com/members/inlovingmemory.htmlMembers Lounge*FREE counselling via email*Daily Horoscopes*FREE psychic/tarot readings via email*Daily cartoons*Medical Resources and more....http://www.elderwyn.com/members Members Profiles, locations and birthdaysMessage Archivesmessages/Upload your PictureTo subscribe or unsubscribesubscribe/ ~~~~~~~~~~~~~~~“Hold on to what is good, even if it's a handful of earth. Hold on to what you believe, even if it's a tree that stands by itself. Hold on to what you must do even, if it's a long way from here. Hold on to your life, even if it's easier to let go." - Pueblo Prayer

[Guest guest]

l harris wrote:

> I have found that social workers are the best

> psychotherapists. Has anyone else had this experience?

> Psychologists are too clinical for me and seem somewhat

> detached and cold. Psychiatrists can be good, if they

> aren't too medication oriented.

I will tell you my opinion of psychiatrists after next

Tuesday, because I am going to one for my PTS... the catch

is, I am RELATED to the psychiatrist, so hopefully he won't

be medication oriented. When most doctors see my allergy

list... medications are the LAST thing they want to put me

on! So I guess, that is okay!!!

Love Always,

Anne

[Guest guest]

HI. I am sure everyone on this list has seen all these things before but having

sat for 2 hours descirbing my symptoms to an Immunologist and beggging for an

adrenal test this morning, I am wondering whether its all worth it.

I do have symptoms of autoimmune disease.. IBS, joint pain, scleritis of the

eyes in the past.. I have also been diagnosed with Hashis.. but have an anti TPO

of 689 and a TSH of 2.82 and free t4 of 14; so all is apparently normal. My

morning temperature averages at 36.2 degrees. and this is the weird thing after

getting up it drops 1/2 dgree to stablise around 35.8 for the rest of the day.

On a bad day when I feel ill, it drops to 34.8.. however the immunologist simply

said.. oh thats great you dont have a fever.. therefore you dont have sjorgrens

disease!!

I have days when usually around 4pm though sometimes as late as 6pm this whole

feeling of utter exhaustion hits me. its physical and mental.. I just want to

hole up under duvet and cry! My periods are short and extremely heavy with

golfball like blood clots.. my hair is thin.. my iron levels not high (well 5 to

start with IN may when the tests started and now 15 at last count).. after 5

months of iron tablets.. I have diarrhea 4/5 times every morning and still put

on weight.. I am out of breath clmbing one flight of stairs..

Help! am I going mad?.. I want to get back to my active life.. all of these

things can be hypo symptoms but everyone tells me they are not as I have TSH of

2.82 so therefore do not need treatment.. and yes, finally I have managed to

grab an appt next weeek with Dr Peatfield.. is this, in anyone's experience what

he can help with .. sorry to go on.. long morning at the docs this morning..

Niki

[Guest guest]

Hi

before you get going with thyroid treatment you want to make sure your iron and

b12 levels are ok. then you start on the adrenals by ordering a saliva test

which costs about £70. These will identify any weakness in the adrenals.

Just to let you know that we have now acquired a discount for

members of TPA-UK from Genova Diagnostics, so you can now get this test done

for £60. However, you must not order the test from the website or you will not

get the discount. You should order instead by writing to christina@...

who will give you the details of the telephone no. and/or the

email address. You MUST however, quote Thyroid patient Advocacy-UK as

'Practitioner' when you order, otherwise, again, you will not get the discount.

We have also been lucky in getting generous discounts from some

Internet Pharmacies where we regularly buy our supplements. Go to the FILES section

of this forum and scroll down until you see the FOLDER entitled 'Internet

Pharmacies' and have a look there. The discounts are for members of TPA-UK

only.

Luv - Sheila__._,_

..___

[Guest guest]

HI . thanks to everyone who wrote. Another problem is I am not in the Uk and

cannot speak enough french and the docs here dont understand enough english to

get by so each visit is almost a nightmare..

can someone tell me whether dr peatfield can run all these tests next week when

I go to see him in London.. I have no idea how to get blood tests done here.. I

dont think I can pull my own blood but could have a go.. and no-one in this

country would authorise it.. if Dr Peatfield has a nurse I could potentially get

blood drawn then.? please do peple know the answer to this.

niki

>

> Hi Niki

>

> I do have symptoms of autoimmune disease.. IBS, joint pain, scleritis of the

> eyes in the past.. I have also been diagnosed with Hashis.. but have an anti

> TPO of 689 and a TSH of 2.82 and free t4 of 14; so all is apparently normal.

>

>

> No, this is NOT normal. You obviously have not been tested to see your Free

> T3 level, so we don't know whether the mainly inactive hormone thyroxine is

> actually converting to the active hormone T3. It is T3 your body needs to

> make every cell in your body and brain function - not thyroxine. your TPO

> antibody level shows you have Hashimoto's disease. The antibodies see your

> thyroid gland as public enemy number one and sets about its gradual

> destruction, so it is unable to put out the thyroid hormones your body

> needs. Your TSH is NOT normal, never mind what your GP states. It is best

> for your TSH to be around 1.0 or even less. Thyroid Stimulating Hormone is

> put out by your pituitary gland. It puts out more TSH when your pituitary

> recognises that your thyroid gland is not putting out sufficient thyroid

> hormones, so it increases to tell your thyroid gland to get on with the job

> of producing the hormones it should.

>

> My morning temperature averages at 36.2 degrees. and this is the weird thing

> after getting up it drops 1/2 dgree to stablise around 35.8 for the rest of

> the day. On a bad day when I feel ill, it drops to 34.8.. however the

> immunologist simply said.. oh thats great you dont have a fever.. therefore

> you dont have sjorgrens disease!!

>

>

> Stupid immunologist! Isn't she aware that a sign of hypothyroidism is low

> body temperature. This is because of your low metabolism. Have you looked at

> a good Sjorgrens disease web site? Type it into google and read the

> information there. Did she even suggest Raynauds Syndrome? - type that also

> into Google and read about that too. Do you have any SIGNS of

> hypothyroidism, such as :

>

>

>

>

>

> Skin:

>

>

> Dry skin

> Thick, scaling skin

> Coarse skin

>

> Hair:

>

> Fineness of hair

> Dry, course, brittle hair

> Sparse eyebrows, especially outer ends

> Hair loss

>

> Nails and skin:

>

> Brittle nails

> Dry ridges down nails

> Cold skin

>

> Swelling:

>

> Swelling of face (oedema)

> Swelling around the eyes (oedema)

> Swelling of eyelids (oedema)

> No pitting oedema of ankles

> Fluid accumulation in abdomen (ascitis)

> Thick tongue

> Swelling of ankles

> Paleness of skin

> Paleness of lips

> Bluish or purplish colour of skin, nail beds, lips or mucous membrane

> Unexplained weight gain

> Hoarseness

> Low basal and activity level temperature

> Protrusion of one or both eyeballs (exophthalmos)

> Slow speech

> Slow pulse rate

> Slow thinking

> Sluggish movement

> Slow relaxation phase of the knee and/or ankle reflex

> Listless, dull look to eyes

> Wasting of tongue

> Nervousness

> Rapid heart rate with weak force of contraction

> Slow heart rate despite low aerobic fitness

> Pounding heart beat

> Cardiac enlargement on X-ray

> Indistinct or faint heart tones

> Low QRS voltage on ECG

> Long normal intervals on ECG

> Fluid around heart (pericardial effusion)

> Changes at the back of the eye (at fundus oculi)

>

> I have days when usually around 4pm though sometimes as late as 6pm this

> whole feeling of utter exhaustion hits me. its physical and mental.. I just

> want to hole up under duvet and cry! My periods are short and extremely

> heavy with golfball like blood clots.. my hair is thin.. my iron levels not

> high (well 5 to start with IN may when the tests started and now 15 at last

> count).. after 5 months of iron tablets.. I have diarrhea 4/5 times every

> morning and still put on weight.. I am out of breath clmbing one flight of

> stairs..

>

> You know, what I would do Niki is to write a long letter to your GP and list

> ALL your symptoms (look in our web site www.tpa-uk.org.uk and look at the

> 'Symptoms' list. Check your symptoms against those there and list these in

> your letter. Also, list what 'signs' you have from the above list. List

> your basal temperature for 4/5 mornings before you get out of bed. List any

> members of your family with a thyroid or autoimmune disease. Ask for the

> following blood tests to be done to see whether any of them are low in the

> reference range and get the results to post here: Ferritin, B12, vitamin D3,

> magnesium zinc, copper and folate. Any of these being low will stop your

> thyroid hormone from being utilized in the cells. Also, if you have not been

> tested to see whether you have antibodies to your thyroid, ask that this

> test be done now. If you do have antibodies to your thyroid, this means they

> see your thyroid gland as public enemy number one and set about its gradual

> destruction so that you will no longer be able to make the thyroid hormones

> your body requires. Ask for a referral to a thyroid specialist (NOT an

> endocrinologist who specialises in diabetes). Ask for your letter of

> requests to be placed into your medical notes and send a copy to the Head of

> Practice.

>

> Help! am I going mad?.. I want to get back to my active life.. all of these

> things can be hypo symptoms but everyone tells me they are not as I have TSH

> of 2.82 so therefore do not need treatment.. and yes, finally I have managed

> to grab an appt next week with Dr Peatfield.. is this, in anyone's

> experience what he can help with .. sorry to go on.. long morning at the

> docs this morning.. Niki

>

> NO, you are NOT going mad - we all feel like that at times when we are stuck

> with a doctor who has no idea what they are talking about and will ONLY give

> a diagnosis if your results are outside of the reference range. Your TSH of

> rising to 3.0 shows you have a thyroid problem. Many sufferers have symptoms

> of hypothyroidism for YEARS before their thyroid function tests go outside

> the range. If you lived in Germany, you would now have been diagnosed

> because their reference range for TSH is 0.3 to 2.5 - with a recommendation

> the top of the range be cut to 1.5. In the US, the ref. range for TSH is

> 0.3 to 3.0 - so it is likely you would have already been diagnosed as

> hypothyroid over there too. TPA-UK is NOT EVERYONE who would tell you that

> a TSH of 2.98 is normal. Again, it is NOT.

>

> Fight your corner Niki - do your homework to enable you to do this and be

> prepared to be assertive. Read what you can about hypothyroidism and the

> associated conditions that go alongside it in our web site and in the files

> section of this forum. We will help where we can.

>

> Excellent that you are seeing Dr Peatfield next week - you will find him a

> complete treasure.

>

> Luv - Sheila

>

>

>

>

>

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>

[Guest guest]

***can someone tell me whether dr peatfield can run all these tests next week whenI go to see him in London.. I have no idea how to get blood tests done here..

Hi Niki,

I'm afraid Dr. Peatfield does not do those blood tests, but you if you happen to be in London, you could go to Genova direct - they have a blood letting service and you do not need a doctor for getting the tests done. The lab is in New Malden, Surrey, which is not a Million miles from Crawley, where I assume, you will see Dr. Peatfield.... but you'd need some transport.....

http://www.iwdl.net/index.php?option=com_content & task=view & id=69 & Itemid=108

Best wishes,