Re: taking high dose of levothyroxine and has lots of questions please

[Guest guest]

Hello Emma and welcome to our forum where I hope you get all the

help and support you so badly need. I am sorry to hear about your third child

being born with so many disabilities, and yes, you can probably blame this on

the fact you were not properly treated for hypothyroidism.

Levothyroxine is a mainly inactive thyroid hormone. It does nothing

on it's own until it has converted through the liver, kidneys and other thyroid

hormone receptors throughout the body into the active thyroid hormone T3. It is

T3 your body needs and not T4. Can you get hold of your latest thyroid hormone

function test results, i.e. TSH, free T4 and free T3 and post them here

together with the reference range for each of the tests done. We can then help

with their interpretation. Remember that no doctor or other healthcare worker

can withhold any of the information that is in your medical notes under the

Data Protection Act 1998.

You are taking a VERY high dose of levothyroxine, and it is time

your doctors did some research to find out the cause of you still suffering so

badly.

What you really need to do now Emma is to write a letter to both

your present GP and endocrinologist and keep a copy for yourself. Doctors do

pay more attention to the written word, where they will deny what has been said

behind a closed surgery door.

Write something along the lines of…..

" Dear Doctor ******

As

I have been continuing to suffer with symptoms of hypothyroidism for a long

time now, and my dose of levothyroxine has now reached 550mcgs, without anybody

apparently knowing why, I am now determined to do whatever is necessary to find

the cause, and hope that you will work with me.

The

present symptoms I am suffering are ….. " (…..here, list all

of your symptoms and list your signs. You can check these against those under

‘Hypothyroidism Symptoms and Signs Checklist in our web site www.tpa-uk.org.uk under 'Hypothyroidism).

" My

basal temperatures before getting out of bed in a morning and before having

anything to drink for the last four mornings have been (….here, list

these if they were 97.8 degrees F (36.6 degrees C) – or less.

(If

this applies…)There

are other members of my family who have a thyroid and/or autoimmune disease and

I am aware this can run down the family line (here, list those members of

your family and their relationship to you plus what they are suffering).

(if

you have not had a recent thyroid function test)… " Please would

you arrange for me to have a FULL thyroid function test to include TSH, free

T4, free T3, TPO and TgAb. I would like the results of these tests together

with the reference range to enable me to keep a diary to help me in my quest to

find the cause of my problems.

I

understand there are specific minerals and vitamins that should be checked to

see whether any are low in the reference range that stop thyroid hormone from

being fully utilised at the cellular level. Would you please arrange for my

levels of iron, transferrin saturation%, ferritin, vitamin B12, vitamin D3,

magnesium, folate, copper and zinc levels to be tested? (If your doctor doesn’t

know about these, or tries to tell you there is no connection, please copy and

print out the references attached to show your doctor to help him/her

understand the connection and why these tests are essential for those suffering

with hypothyroidism). Please would you make these results available to me

together with the reference range for each test done? I understand that should

any be low in the range, these will need to be supplemented before the thyroid

hormone will work. "

I

would like a referral for my Sleep Apnoea

I

would like a referral to a specialist in thyroid disease for a thorough

clinical examination and an assessment of my clinical history, as well as the

results of serum thyroid function tests as determined by…

The

Department of Health, who state that,

" Blood tests are useful in helping diagnose hypothyroidism

but should not be used in isolation and other factors must be taken into

account such as the absence or presence of symptoms. This is why

at present it is considered good medical practice to rely upon

clinical history and examination, in addition to blood tests, in the

diagnosis of this condition”.

The

British Thyroid Foundation state that,

“The biochemical results have to be considered alongside clinical

symptoms, and together they determine the point at which the physician

will introduce Thyroxine therapy " .

…and The GMC

who state that:

" Good clinical care must include: an adequate assessment of the patient's conditions, based on the

history and symptoms and, if necessary, an appropriate examination " .

I do not feel that my symptoms and signs are being taken

into account. I also do not believe that the mainly INACTIVE thyroid hormone

thyroxine is converting to the ACTIVE thyroid hormone T3 and would therefore

like a trial of Liothyronine, in combination with levothyroxine, T3 on its own,

or natural thyroid extract.

Please will you place this letter of requests in my Medical

Records? I await hearing from you in due course.

Kind regards.

Emma ****** "

How did you come to get a crushed spinal disc

Emma. As far as your breathing problems go, check out 'Air Hunger to Death' and

see if you fit the Bill here http://www.drlowe.com/jcl/comentry/breathingproblems.htm.

Also, Lilian will have sent you an invitation

to join our Chat Forum (where you can talk about anything other than thyroid

disease). You should join that because we are finding excellent results with

many of our members trying a very low calorie diet and using homeopathic medicine.

A preliminary trial is being run in Australia and you could join this if this

appeals. Some of our members are losing stones in weight where they have never

been able to lose before. You can learn more about this there.

Hope this helps, but be assured Emma, there is

light at the end of the tunnel, but more than likely, you will have to take

your thyroid health into your own hands.

Luv - Sheila

..

I have seen a endocrinologist a few times and they just increase the dose each

time.

I now also have had a crushed spinal disc, breathlessness and now daytime apnea

and sleep apnea because of the weight I can not lose also.

I am totally stuck and desperate. The hospital and my GP will not do anything

else or offer me anything else.

I have been stuck on a very low calorie diet and exercise plan for now years, I

am actually frightened of food as if I go over 1000 calories one day it leads

to a massive weight gain.

I am totally lost and upset and i do not know what else to do.

Any help really appreciated. I will not get any help from the GP and have

changed surgeries also and GPs twice looking for help.

Thanks Emma.

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[Guest guest]

>

> Hi my name is Emma and I am 33. I have been diagnosed with hypothyroidism

since 2003 and I am married and have 3 children. Our 3rd child was born with

disabilities (developmental delay, hypotonia, numbness in bladder and bowel,

ehler danlos syndrome) which the main cause was my still being hypo in pregnancy

in 2007.

> I have only been offered levothyroxine despite there being no change apart

from getting worse symptoms and results and a huge weight gain.

> I am currently on 550mcg of T4 daily.

>

>

Hi Emma, You are in the right place for help and advice. I cannot understand how

your doctors thinks it ok for you to be taking such a massive dose of

Levothyroxine! (or was that a typo). Surely they can see that it's not working

for you! You need to start writting to them telling them that you are not happy

with your treatment and, that you believe you should be given some alternaive as

your present treatment is obviously not working for you. I am sure one of the

more experienced members will be along shortly to give more detailed advice and

a better plan of action as I am still a bit of a novice myself. Could you afford

to go and see Dr Skinner or Dr Peatfield, they are both excellent doctors and

really know a lot about thyroid disease and the best method of treating it. Hope

you get the help you need soon. Luv Sue X