RE: Have decided to self medicate - Help!

[Guest guest]

It would be good to know your symptoms. If you think you have RT3, take T3 only or you will get worse. You should get an RT3 test done with Genova Diagnostics in this case. Then decide. I was prescribed T4 for four years and it made me very ill and I ached everywhere, back, legs, feet, arms and hands.

Hope this helps,

MacGilchrist

From: retroppink <sian_porter@...>thyroid treatment Sent: Fri, 15 April, 2011 15:18:11Subject: Have decided to self medicate - Help!

After a really disappointing dr's appt with GP this morning have decided no other option than to self medicate. She was very nice and apologetic but the surgery will not test for anyhting other than TSH and as that is at 2.38 (.25 - 4) despite my numerous symptoms she cannot do anything. Told me to come back in two months for another tsh test - was the best she could do. I am now very confused. Do i go down the T3 & T4 route or opt for Erfa?? Could anyone give me the pros / cons? thanksSian

[Guest guest]

MODERATED TO REMOVE PREVIOUS MESSAGES ALREADY READ. PLEASE CHECK YOU HAVE

DELETED THESE BEFORE CLICKING SEND AND LEAVE JUST A SMALL PART OF WHAT YOU ARE

RESPONDING TO. MANY THANKS. SHEILA.

________________________________________________________________

My symptoms are general fatigue, muscle / bone aches, coldness and after

exerting myself too much i get quite flushed very tired and feel like i'm

getting a cold for a day - but it never develops, sore throat etc..

I have been looking into getting the Genova test done. Do you think i need a

full thyroid profile done or could just get the RT3 on its own as i have just

had TSH done last week on NHS. Funds are extremely limited for me at the moment!

My only other problem is trying to find somewhere to take the blood as my GP's

surgery wont do it has anyone else experienced problems finding a private

phlebotomist?

thansk once again

Sian

>

> It would be good to know your symptoms.  If you think you have RT3, take T3

only

> or you will get worse.  You should get an RT3 test done with Genova

Diagnostics

> in this case.  Then decide.Â

[Guest guest]

Best to get the fully thyroid function test done if they do free

T4 and free T3 plus total T3 - then we can help interpreting these to see if

you could have Reverse T3. TSH on its own is a next to useless test as most

doctors already know, yet it is more important for them to save their surgery

money.

You should be able to have your blood drawn at a local private

hospital. Have you actually asked your GP if he will draw your blood for

you - and I don't mean asking the receptionist or sister. Go direct to the

horses mouth.

Luv - Sheila

My symptoms are general fatigue, muscle / bone aches, coldness and after

exerting myself too much i get quite flushed very tired and feel like i'm

getting a cold for a day - but it never develops, sore throat etc..

I have been looking into getting the Genova test done. Do you think i need a

full thyroid profile done or could just get the RT3 on its own as i have just

had TSH done last week on NHS. Funds are extremely limited for me at the

moment! My only other problem is trying to find somewhere to take the blood as

my GP's surgery wont do it has anyone else experienced problems finding a

private phlebotomist?

thansk once again

Sian

_._,___

[Guest guest]

Sian - this is quite

appalling. She is there to work with her patients and to help them regain their

normal health, and she has no right to dismiss you in this way, leaving you

with virtually no option but to self diagnose, self treat and self monitor. You

really must not give up on this.

Write her a letter and tell

her that you are extremely disappointed with the way you are being treated. If

you wish, even quote to her the 'Duties of a Doctor' registered with the

General Medical Council which you can find here http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp

 - the one's in particular

you need to point out are

o Listen to patients and

respond to their concerns and preferences:

o Give patients the

information they want or need in a way they can understand

o Respect patients' right to

reach decisions with you about their treatment and care

o Support patients in caring

for themselves to improve and maintain their health

You are personally

accountable for your professional practice and must always be prepared to

justify your decisions and actions.

Write that the British Thyroid Association, the Association of

Clinical Biochemists, and The Royal College of Physicians state categorically

in their Guidelines on Thyroid Function Testing http://www.british-thyroid-association.org/info-for-patients/Docs/TFT_guideline_final_version_July_2006.pdf

 and their Statement on the Diagnosis and Management of Primary Hypothyroidism http://www.british-thyroid-association.org/news/Docs/hypothyroidism_statement.pdf

that both TSH and a measure of Free Thyroxine (fT4) should be

tested to help reach a diagnosis and that symptoms and signs, family history

should be taken into account and THAT YOU WISH FOR THESE TO BE DONE

ACCORDINGLY.

Tell her also that it is well known that thyroid function blood

test results can be influenced by many factors, any of which should be

taken into consideration, e.g.

·

Labelling errors

·

Bacterial contamination

·

Yeast/Fungal contamination

·

Clotting

·

Sampling errors

·

Sample preparation errors

·

Sample storage errors

·

Thermal cycling

·

Antithyroid antibodies (any)

·

Antibodies from any other cause

·

Presence of specific ‘toxins’ in the blood

·

Presence of pharmaceutical drugs (interferences) within the

blood

·

The method of analysis being carried out eg radio-immune assay

(RIA)

·

‘Systematic’ errors in analytical equipment or

methodology

·

Composite errors <> pre-analysis (not mentioned above)

·

MCT8 mutations

It is also known that thyroid function tests will be normal also

in patients who have a proven carcinoma. The T4 and TSH value can be misleading

in such cases.

Many individuals with classic symptoms of hypothyroidism, such

as low body temperature, joint pain, fatigue and depression, are discouraged

when they’re told that their thyroid hormone levels are within the normal

range. The question of whether they might be resistant to their body’s

own thyroid hormone is seldom considered. Yet, a disease known as thyroid

hormone resistance can prevent thyroid hormone from reaching the body’s

cells.

The discovery of MCT8 mutations explains laboratory

discrepancies (1) e.g. cases in which the lab results didn’t fit a

particular pattern.  It also explains how thyroid hormone resistance can cause

TSH to appear normal even with a low FT4.  In many instances only the TSH test

is performed. If the TSH result is normal, and symptoms of hypothyroidism are

observed, tests for FT4, FT3 and T3 should all be performed.

None of these types of error are ever shown as being part of the

reference range, but they all add to the unquantifiable

‘unreliability’ of the final number that appears on a lab report;

stated to be within/outside a reference range. The labs expect, but often

don’t get, notification of antibodies found by other labs or by

investigations showing antibody activity, to enable proper screening (dilutions)

for likely errors. e.g. vitiligo, alopecia, ongoing autoimmune symptoms

specific to such as lupus, autoimmune attacks on specific organs, histology

samples, haematological examinations.(2)  A search on Pubmed shows 126 such

cases.

Write also that the TSH reference range in the US is 0.3 to 3.0

and that in Germany, Belgium and Sweden, the range is 0.3 to 2.5 with a

recommendation this upper level is brought down to 1.5. These countries changed

their TSH reference range when they realised millions of patients were being

refused a diagnosis who were actually suffering with hypothyroidism.

LIST ALL OF YOUR SYMPTOMS AND SIGNS. You can check these against

those in our web site www.tpa-uk.org.uk under 'Hypothyroidism'. It

doesn't matter how long this list is - show this doctor you mean business and

that you will not let her get away with hiding behind 'what the surgery does

and does not do' - She has a responsibility for her patients and must abide by

that responsibility.

Write that you would like the following thyroid function testing

done - TSH, free T4, free T3 and the tests to see whether or not you have

thyroid antibodies. Thyroid antibodies see your thyroid gland as public enemy

number one and sets about its eventual complete destruction - and you will need

thyroid hormone replacement for the rest of your life.

List also, the minerals and vitamins that you need testing, and

cite the following studies to show why you need these done and their

association with hypothyroidism.

Low iron/ferritin: Iron

deficiency is shown to significantly reduce T4 to T3 conversion, increase

reverse T3 levels, and block the thermogenic (metabolism boosting) properties

of thyroid hormone (1-4). Thus, iron deficiency, as indicated by an iron

saturation below 25 or a ferritin below 70, will result in diminished

intracellular T3 levels. Additionally, T4 should not be considered adequate

thyroid replacement if iron deficiency is present (1-4)).

1.

Dillman E, Gale C, Green W, et al.

Hypothermia in iron deficiency due to altered triiodithyroidine metabolism.

Regulatory, Integrative and Comparative Physiology 1980;239(5):377-R381.

2.

SM, PE, Lukaski HC. In

vitro hepatic thyroid hormone deiodination in iron-deficient rats: effect of

dietary fat. Life Sci 1993;53(8):603-9.

3.

Zimmermann MB, Köhrle J. The Impact of

Iron and Selenium Deficiencies on Iodine and Thyroid Metabolism: Biochemistry

and Relevance to Public Health. Thyroid 2002;12(10): 867-78.

4.

Beard J, tobin B, Green W. Evidence for

Thyroid Hormone Deficiency in Iron-Deficient Anemic Rats. J. Nutr.

1989;119:772-778.

Low

vitamin B12: http://www.ncbi.nlm.nih.gov/pubmed/18655403

Low

vitamin D3: http://www.eje-online.org/cgi/content/abstract/113/3/329

and http://www.goodhormonehealth.com/VitaminD.pdf

Low

magnesium: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC292768/pdf/jcinvest00264-0105.pdf

Low

folate: http://www.clinchem.org/cgi/content/full/47/9/1738

and http://www.liebertonline.com/doi/abs/10.1089/thy.1999.9.1163

Low 

copper/zinc:http://www.istanbul.edu.tr/ffdbiyo/current4/07%20Iham%20AM%C4%B0R.pdf

and http://articles.webraydian.com/article1648-Role_of_Zinc_and_Copper_in_Effective_Thyroid_Function.html

Write

that you wish to be referred to an endocrinologist of your choice (somebody who

has experience with thyroid disease and not an endocrinologist who just has a

speciality in diabetes) (I have sent you my doctors list). You can be referred

outside of the area if necessary.

Tell

the GP you are not prepared to be fobbed off and given no explanation/diagnosis

for your symptoms and that you need all the above testing done to rule out any

possibility of any disorder that could benefit from treatment - if it is not

hypothyroidism, then it is up to her to find the cause.

LAST:

ASK FOR YOUR LETTER OF REQUESTS TO BE PLACED INTO YOUR MEDICAL NOTES AND SEND A

COPY TO THE HEAD OF PRACTICE.

Doctors

pay a lot more attention to the written word than they do in a face to face

consultation.

Good

luck. Stand up for yourself Sian and your doctor just might have to cooperate

and earn the high wage she gets.

Let

us know what happens.

Luv

- Sheila

After a really disappointing dr's appt with GP

this morning have decided no other option than to self medicate. She was very

nice and apologetic but the surgery will not test for anyhting other than TSH

and as that is at 2.38 (.25 - 4) despite my numerous symptoms she cannot do

anything. Told me to come back in two months for another tsh test - was the

best she could do. I am now very confused. Do i go down the T3 & T4 route

or opt for Erfa?? Could anyone give me the pros / cons?

thanks

Sian