update: test results 07/09/2011 new T3 only dose 50mcg

[Guest guest]

hey guys a little update in desperate and having massive problems with my T3

doses. id appreciate any advice

i am now on T3 only medication since i was so sick on the t4 only (spent over 2

years with no improvement infact i felt sicker and sicker so i gave up on it)

I have hasimotos but my labs are always all over the place...sometimes i get

High TSH then really low...but the FT3 and FT4 levels are always within

range...sometimes even low in range which is strange..why would the TSH be

changing so much??? I can never tell if im hyper or hypo i just always feel

unwell...and when i do feel a little better it never lasts

i was on 50mcg of t3 medication on my last visit to the GP these where my

results:

Estimated Glomerular Filtration Rate: 136.6 (50-70) still high

Potassium: 4.3 (3.5-5)

Sodium: 138 (136-145) i had been taking more salt with food but my sodium has

not increased at all

Glucose: 5.73 (4.1-5.9)

GGT: 13 (7-32)

ALT: 44 (10-37) this is new lol

Cholesterol: 4.62 (2.9-4.7)

Iron: 19.40 (8.8-27) taking iron

TIBIC: 37.2 (27.8-53.7)

Ferritin: 63.2 (10-120)

Iron Saturation: 34.3% (20-50)

Vitamin B12: 405.00 (133-675) taking B12

Folate: 14.17 (8.07-45.3) taking Folate

Cortisol: 354.9 (185-624) this has decreased by half since starting T3

medication!!! which is good since i though i may have cushings...

TSH 0.008 (0.4-4.2) This is just confusing me and my GP/Endo

FT4: 2.80 (7.86-14.41)

FT3: 4.20 (3.8-6)

Blood pressure and heart rate readings around the time of this blood test whilst

on 50 mcg of T3 meds:

104/68 84 bpm (17:41)

103/66 93 bpm (15:42)

104/67 111 bpm (14:29)

96/76 126 bpm (13:46)

97/64 93 bpm (11:00)

94/64 106 bpm (10:00)

99/74 117 bpm (11:33)

94/79 112 bpm (10:00)

my GP said i was going hyper on the medication and lowered it to 10mcg of T3 !!!

well you can imagine i feel like the walking dead again here are my new

reading whilst on 20 mcg of T3 only ( i couldnt take any less because i started

to swell and my my hands burning not to mention the insomnia and nightmares etc)

Blood pressure and heart rate whilst on 20mcg of T3 only:

92/56 70 bpm

94/56 59 bpm (11:20)

94/60 77 bpm (05:47)

89/58 66 bpm (00:57)

97/64 92 bpm (11:12)

98/60 78 bpm (08:19)

97/57 52 bpm (20:51)

95/62 84 bpm (12:58)

94/56 59 bpm (11:20)

my heart beat felt a lot better when decreasing the meds i must say i never

realised i had such a constant pounding in my chest and neck until it

stopped...but my other hypo symptoms are back .....i cant win

If i lower meds i go very hypo..

if i increase meds my heart rate goes mad and that also gives me symptoms...

what can i do??? i tried calling my GP 2 days now he wont call back.....i tried

getting an appointment but i have to be there at 7:30am so i can get one before

he is fully booked and as im so tired well i cant physically wake up or move at

that time this is an NHS GP at our one and only public hospital.

any advice on why my heart rate would increase so much?? what am i doing wrong??

is it my sodium levels???

am i going from hypo to hyper as the GP said?? because my T3 and T4 are not over

the range infact my T3 is low normal....why on earth would he say im hyper??

please advise im so confused sometimes it scares me that i feel so sick...today

was hell

I walked to work like i was walking through thick mist...i could feel my legs

moving so slowly i felt so so slow it was so embarrassing ...i couldnt even

speak properly today because even my talking was slow i couldnt concentrate

and my eyes where blurry. My eyes where so heavy i was falling asleep whilst

walking to work. then if i sat for too long id feel even worse....my muscles

where heavy as lead and i could barely eat anything...ive been very thirsty for

water and at times i felt like i was gasping for air...ive lost alot of my

appetite im not eating much infact i dont feel anything at all im kind of

numb....(and no im not depressed i just feel weird) i had to sleep when i got

back from work because i thought i would pass out. I really dont like this new

dose of T3 its making me slow and stupid again not to mention bed bound

My Endo at the public NHS hospital wont send me for a second opinion in the UK

he says im fine that my blood levels are normal he is the only one that can

refer me to another endo in the NHS Uk....:/ why would he leave me feeling like

this?? why wont he help me? im only 25 years old...its not fair im afraid ill

end up in hospital for being too hypo or for having tachycardia either way

ive already had 2 abnormal ECGs and been sent to the UK for a study of my heart

with no luck in symptom relief. for freaks sake can this man not send me to an

Endo with experience in difficult cases of hasimotos disease!!!!

any advice??? ive read about hashitoxicosis??? could this be my problem?? am i

swinging from hyper to hypo too fast and perhaps this is why i never feel well

on my meds for long??

[Guest guest]

Hi Elaine

I have hasimotos but my labs are always all over the place...sometimes i get

High TSH then really low...but the FT3 and FT4 levels are always within

range...sometimes even low in range which is strange..why would the TSH be

changing so much??? I can never tell if im hyper or hypo i just always feel

unwell...and when i do feel a little better it never lasts

With Hashimoto's disease, the antibodies set about the eventual

total destruction of your thyroid gland. when the antibodies attack your

thyroid, there is insufficient thyroid hormone being secreted, so the pituitary

secretes more TSH to tell the thyroid to start secreting more thyroid hormone.

When the antibodies are not attacking your thyroid, it carries on secreting the

thyroid hormone and the pituitary recognises this, so has no need to secrete

TSH - so your TSH level goes down. For people with Hashimoto's as a cause of

their hypothyroidism, T4-only is not what they need.

i was on 50mcg of t3 medication on my last visit to the GP these where my

results:

Sodium: 138 (136-145) i had been taking more salt with food but my sodium has

not increased at all Are you using refined or unrefined salt. You should be using

unrefined salt such as Himalayan pink salt which has over 87 essential

minerals. With white unrefined salt, all of these have been removed.

Ferritin: 63.2 (10-120) I have never seen such a narrow ref. range for ferritin -

it's usually somewhere in the region of 20 -200 for women. However, if this

ref. range is correct, 63 is OK.

TSH 0.008 (0.4-4.2) This is just confusing me and my GP/Endo For anybody taking any

form of T3, TSH naturally becomes completely suppressed because again, the

pituitary recognises that there is sufficient thyroid hormone in the blood, so

the pituitary has no need to secrete any TSH.

FT4: 2.80 (7.86-14.41) This is very low - even though T4 is mainly inactive, it

still has some uses and you might benefit by adding 25mcgs T4 with your T3.

FT3: 4.20 (3.8-6) This is too low for somebody taking T3 - unless you didn't take any T3 the

morning you had your blood drawn which would naturally show much lower than if

you had taken your T3 that morning. T3 peaks in the blood a couple or so hours

after taking it, so if you did take it that morning, yours should have been

near to the top of the ref. range. If that was the case, you need an increase

in your T3 dose.

If i lower meds i go very hypo..

if i increase meds my heart rate goes mad and that also gives me symptoms...

I

think there is something going on that is stopping your thyroid hormone from

getting into the cells where it needs to do it's job. Please read the

information in the attached document and go through each one of these as a process

of elimination.

what can i do??? i tried calling my GP 2 days now he wont call back.....i tried

getting an appointment but i have to be there at 7:30am so i can get one before

he is fully booked and as im so tired well i cant physically wake up or move at

that time this is an NHS GP at our one and only public hospital.

Then

you need to write a letter to your GP (see draft attached) and either pop it

into the surgery or post it. Ask your GP to write to you to confirm that your

letter has been placed into your medical notes. Doctors do pay more attention

to the written word, they have to. Keep a copy for yourself in case you need it

at a later date and send a copy to the Head of Practice.

any advice on why my heart rate would increase so much?? what am i doing

wrong?? is it my sodium levels???

am i going from hypo to hyper as the GP said?? because my T3 and T4 are not

over the range infact my T3 is low normal....why on earth would he say im

hyper?? please advise im so confused sometimes it scares me that i feel so

sick...today was hell

Hopefully,

this is answered in the attached document showing reasons why thyroid hormone

isn't working. You appear to be getting symptoms of thyroid toxicity because

the thyroid hormone is lying in your blood with nowhere to go but you need to

find the cause for this.

i was gasping for air...ive lost alot of my appetite im not eating much infact

i dont feel anything at all im kind of numb....(and no im not depressed i just

feel weird) i had to sleep when i got back from work because i thought i would

pass out. I really dont like this new dose of T3 its making me slow and

stupid again not to mention bed bound

Read what Dr Lowe has to say about 'air hunger' - http://www.drlowe.com/jcl/comentry/breathingproblems.htm

If you felt better on the increased dose, make this

clear in your letter to your doctor and tell him that you feel so bad on the

decreased dose that you need the dose increasing back to where it was. Doctors

should stop treating bits of paper and start listening to their patients

symptoms.

My Endo at the public NHS hospital wont send me

for a second opinion in the UK he says im fine that my blood levels are normal

he is the only one that can refer me to another endo in the NHS Uk....:/ why

would he leave me feeling like this?? why wont he help me? im only 25 years

old...its not fair im afraid ill end up in hospital for being too hypo or for

having tachycardia either way ive already had 2 abnormal ECGs and been sent

to the UK for a study of my heart with no luck in symptom relief. for freaks

sake can this man not send me to an Endo with experience in difficult cases of

hasimotos disease!!!!

You can see a private doctor without a referral from your

doctor. I thought it was your GP who decided whether or not to refer you to

another endocrinologist or not - not the endo.

any advice??? ive read about hashitoxicosis??? could this be my problem?? am i

swinging from hyper to hypo too fast and perhaps this is why i never feel well

on my meds for long??

If you feel you have cause for complaint about the

endocrinologist and/or GP, you should start a full complaints procedure. I am

not sure how you go about this over in Ireland but check out our Files Section

where you will see how it works over here. Have you considered trying a gluten

free diet as antibodies thrive on gluten and will cause worsening problems. You

should also be taking 200mcgs Selenium every day with food.

Luv - Sheila

2 of 2 File(s)

Why thyroid hormone stops working (2).doc

A14.DRAFT LETTER YOU MAY WISH TO SEND TO YOUR DOCTOR.doc

[Guest guest]

hi and thanks for all this :)I am having quite a terrible time on the T3 medication because of the GPs mistakes and the consultants negligence. At least i have some support from you guys.I take sea salt (sal marina) is that ok? thick sea salt.I wish my GP would have know that my TSH would be suppressed. He then wouldnt have lowered my T3 from 50mcg to 10mcg....I never knew i could get so sick...it has been a week now and i am still trying to recover the worst now is the swelling in my neck and the need for air. especially the choking and need for air. Ive also put weight on 2 kils in a week....im surprised...I had some results back from a reverse T3 test...my GP said that i may have had some problems converting T4 to T3 should i still try adding the T4??If im having issues with using the thyroid meds ill be devistated since there isnt a doctor around me that can help im looking at your info and im thinking i may opt to see DR SKinner. He is cheaper than DR Friedman though he will only treat thyroid.Thanks i will write this letter and infor my GP of his mistake but now i dont feel i can trust him after it made me so sick :(i will also do the complaint...I live in Gibraltar do you know how this would be done here??? the article is very good and i could try eliminating some gluten too....thanks so much ill keep you updated :)xx>> Hi Elaine> I have hasimotos but my labs are always all over the place...sometimes i get> High TSH then really low...but the FT3 and FT4 levels are always within> range...sometimes even low in range which is strange..why would the TSH be> changing so much??? I can never tell if im hyper or hypo i just always feel> unwell...and when i do feel a little better it never lasts > > With Hashimoto's disease, the antibodies set about the eventual total> destruction of your thyroid gland. when the antibodies attack your thyroid,> there is insufficient thyroid hormone being secreted, so the pituitary> secretes more TSH to tell the thyroid to start secreting more thyroid> hormone. When the antibodies are not attacking your thyroid, it carries on> secreting the thyroid hormone and the pituitary recognises this, so has no> need to secrete TSH - so your TSH level goes down. For people with> Hashimoto's as a cause of their hypothyroidism, T4-only is not what they> need.> i was on 50mcg of t3 medication on my last visit to the GP these where my> results:> Sodium: 138 (136-145) i had been taking more salt with food but my sodium> has not increased at all Are you using refined or unrefined salt. You should> be using unrefined salt such as Himalayan pink salt which has over 87> essential minerals. With white unrefined salt, all of these have been> removed.> Ferritin: 63.2 (10-120) I have never seen such a narrow ref. range for> ferritin - it's usually somewhere in the region of 20 -200 for women.> However, if this ref. range is correct, 63 is OK. > TSH 0.008 (0.4-4.2) This is just confusing me and my GP/Endo For anybody> taking any form of T3, TSH naturally becomes completely suppressed because> again, the pituitary recognises that there is sufficient thyroid hormone in> the blood, so the pituitary has no need to secrete any TSH.> FT4: 2.80 (7.86-14.41) This is very low - even though T4 is mainly inactive,> it still has some uses and you might benefit by adding 25mcgs T4 with your> T3.> FT3: 4.20 (3.8-6) This is too low for somebody taking T3 - unless you didn't> take any T3 the morning you had your blood drawn which would naturally show> much lower than if you had taken your T3 that morning. T3 peaks in the blood> a couple or so hours after taking it, so if you did take it that morning,> yours should have been near to the top of the ref. range. If that was the> case, you need an increase in your T3 dose.> If i lower meds i go very hypo..> if i increase meds my heart rate goes mad and that also gives me symptoms...> I think there is something going on that is stopping your thyroid hormone> from getting into the cells where it needs to do it's job. Please read the> information in the attached document and go through each one of these as a> process of elimination.> what can i do??? i tried calling my GP 2 days now he wont call back.....i> tried getting an appointment but i have to be there at 7:30am so i can get> one before he is fully booked and as im so tired well i cant physically wake> up or move at that time this is an NHS GP at our one and only public> hospital.> Then you need to write a letter to your GP (see draft attached) and either> pop it into the surgery or post it. Ask your GP to write to you to confirm> that your letter has been placed into your medical notes. Doctors do pay> more attention to the written word, they have to. Keep a copy for yourself> in case you need it at a later date and send a copy to the Head of Practice.> any advice on why my heart rate would increase so much?? what am i doing> wrong?? is it my sodium levels???> am i going from hypo to hyper as the GP said?? because my T3 and T4 are not> over the range infact my T3 is low normal....why on earth would he say im> hyper?? please advise im so confused sometimes it scares me that i feel so> sick...today was hell> Hopefully, this is answered in the attached document showing reasons why> thyroid hormone isn't working. You appear to be getting symptoms of thyroid> toxicity because the thyroid hormone is lying in your blood with nowhere to> go but you need to find the cause for this.> i was gasping for air...ive lost alot of my appetite im not eating much> infact i dont feel anything at all im kind of numb....(and no im not> depressed i just feel weird) i had to sleep when i got back from work> because i thought i would pass out. I really dont like this new dose of T3> its making me slow and stupid again not to mention bed bound> > Read what Dr Lowe has to say about 'air hunger' -> http://www.drlowe.com/jcl/comentry/breathingproblems.htm If you felt better> on the increased dose, make this clear in your letter to your doctor and> tell him that you feel so bad on the decreased dose that you need the dose> increasing back to where it was. Doctors should stop treating bits of paper> and start listening to their patients symptoms.> > My Endo at the public NHS hospital wont send me for a second opinion in the> UK he says im fine that my blood levels are normal he is the only one> that can refer me to another endo in the NHS Uk....:/ why would he leave me> feeling like this?? why wont he help me? im only 25 years old...its not fair> im afraid ill end up in hospital for being too hypo or for having> tachycardia either way ive already had 2 abnormal ECGs and been sent to> the UK for a study of my heart with no luck in symptom relief. for freaks> sake can this man not send me to an Endo with experience in difficult cases> of hasimotos disease!!!!> > You can see a private doctor without a referral from your doctor. I thought> it was your GP who decided whether or not to refer you to another> endocrinologist or not - not the endo.> > any advice??? ive read about hashitoxicosis??? could this be my problem?? am> i swinging from hyper to hypo too fast and perhaps this is why i never feel> well on my meds for long??> > If you feel you have cause for complaint about the endocrinologist and/or> GP, you should start a full complaints procedure. I am not sure how you go> about this over in Ireland but check out our Files Section where you will> see how it works over here. Have you considered trying a gluten free diet as> antibodies thrive on gluten and will cause worsening problems. You should> also be taking 200mcgs Selenium every day with food. > > Luv - Sheila>