Underactive thyroid

[Guest guest]

Hi everyone.

Im so glad ive found someone to talk to. No one seems to understand.

I have been diagnosed with an underactive thyroid for 18months now.

I started of depressed , stressed out lack of energy , aching joints and feeling

cold, fuzzy head and I thought I was going deaf. Went for a blood test and doc

rang me back in a panic , my thyroid had stopped working and needed to go on

levothyroxine straight away.

I have had a couple of blood tests after the inital loading doses and to be

honest feel damm awfull.

My periods are awful , to the point I dont go out for more than an hour when im

on (too much information i know lol) and for the past 3 weeks I feel like im

walking through treacle and am sooooooooo tired im in bed at 8pm and sleep like

a log. I have trouble talking and forget what im saying and cant be bothered

with anything.

Im back to the docs on tue and I want this sorted out im sick of feeling this

way all the time.

I want to go to the docs and not be fobbed off .

Any ideas on what to say

Sorry for the long boring post .

Fiona xx

[Guest guest]

Hello

Fiona and welcome to our forum where I hope you get the support you need.

I

guess we have all been there and understand where you are coming from and how

you feel 100%. It can be a very lonely and frightening place, especially when

our own GP is unable to answer the questions we need answering, or give us a

diagnosis and therefore, no treatment.

How

much levothyroxine did your doctor start you on and what dose are you taking

now?

Have

a look in the FILESA section of this forum website and read everything you can

about hypothyroidism. Also, read what you can about adrenal fatigue and

Candida. Ask your GP to check your thyroid function test but specifically ask

for a Free T4 and Free T3 test to see whether you are converting the mainly

inactive thyroxine (T4) to the active hormone triiodothyronine (T3). It is T3

that your body needs, but for a large minority of sufferers, they don't have the

necessary enzyme to make this happen, so the T4 is doing nothing, stacking up

ion the blood and giving you symptoms of toxicity, and as your body is unable

to operate without T3, of course you are going to feel pretty awful. You need

to get him to check your blood to see if any of the following are low:

Ferritin(stored iron), B12, Vitamin D, Magnesium, zinc, copper. If any of these

are very low, your body is unable to absorb the thyroid hormone you are taking,

and any deficiency MUST be treated.

Ask

your GP to refer you to an endocrinologist for a second opinion. You cannot

carry on like this. Read the information in our website under 'Hypothyroidism'

and if you have any questions you need answering, just shout.

There

IS light at the end of the tunnel.

luv -

Sheila

Im so glad ive found someone to talk to. No one seems to understand.

I have been diagnosed with an underactive thyroid for 18months now.

I started of depressed , stressed out lack of energy , aching joints and

feeling cold, fuzzy head and I thought I was going deaf. Went for a blood test

and doc rang me back in a panic , my thyroid had stopped working and needed to

go on levothyroxine straight away.

I have had a couple of blood tests after the inital loading doses and to be

honest feel damm awfull.

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[Guest guest]

You

need to write a letter to your doctor listing your symptoms and signs

(check those on our web site www.tpa-uk.org.uk ). Tell your doctor in the

letter that you wish these to be taken into consideration together with a full

clinical examination, family history, your own past medical history, and NOT to

go on thyroid function tests ONLY. Thyroid function tests on their own do NOT

show always whether you have normal or abnormal thyroid function. Thyroid function blood

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

doctor should take 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

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 for likely

errors. e.g. vitiligo, alopecia, ongoing autoimmune symptoms specific to such as

lupus, autoimmune attacks on specific organs, histology samples, haematological

examinations. A search on Pubmed shows 126 such cases.

Take your temperature every morning before getting out of bed

for 4 or 5 days and list the results. A temperature of less than 97.8 is an

indication you could be suffering from hypothyroidism.

List the blood tests you need to find out whether any are low in

the reference range i.e. ferritin, vitamin B12, vitamin D3, magnesium, folate,

copper and zinc - if any are low, they will stop the thyroid hormone from

getting into the cells and need to be supplemented. Get the results together

with the reference range and post them on the forum as many doctors will tell

you that your results are 'normal' wherever they appear in the reference range.

Would you consider seeing one of our medical advisers, i.e Dr

Peatfield, Dr Skinner or Dr Mantzourani. I have sent you a copy of the list of

doctors I have who have been recommended by some of our members.

When you send this letter to your doctor, send a copy to the

Head of Practice too and keep a copy yourself. See what happens.

Luv - Sheila

I have been having symptoms of underactive thyroid for years now but the

doctors will only do blood tests and always say they came back normal they

never look at the symptoms i am suffering.

How can i find a doctor who will connect all the dots and help me with this? I

even have a goiter in my neck that feels very uncomfortable but they don't deem

it to be big enough to operate on ( it is 25mm-30mm in diameter). Please help

me find a doctor who is not too far away that will help me with this, i did the

thyroid test on line and ticked 35 boxes, i also get cramps in my lower leg and

ankle, have dry eye amongst other things i have since found out can also

indicate hypothyroidism, i dont get any of the menstrual symptoms as i had a hysterectomy

years ago for endometriosis( yet another symptom).

I live in Telford (Shropshire) but would be willing to travel if that's what it

takes to get diagnosed. I am an NHS patient but would even be willing to pay

for the diagnoses as this is ruining my life !

Has anyone got any advice on what i could do or where i could go for this???

Sue Purcell

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18:34:00

[Guest guest]

Hi Kim - your tale just shows what an appalling mess these NHS

doctors are causing for tens of thousands of those suffering the symptoms of

hypothyroidism. Any doctor who told me that I was " a strain on the

NHS " because I was being prescribed levothyroxine (which cost pennies) I

would have immediately reported to the Head of Practice and to your local

Primary Care Trust. How DARE he? I would quote to him the GMC 'Duties of a

Doctor' http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp

and I would also probably have responded by telling him that 2No, you are

wrong, it is doctors like you who are a strain on the NHS - because we, the

tax-payer are paying his wages and it is absolutely obvious our money is being

totally wasted on doctors who are not prepared to lift a finger to help their

patients. Run a mile Kim, you do not have to stay with such a doctor - it is

obvious he is not going to help you and will probably cause you great

suffering.

Report him to your PCT and ask to be moved to a new doctor who

does care about helping his patients get back their normal health.

There are many reasons why synthetic thyroxine cannot work for

many sufferers of the symptoms of hypothyroidism, and these are listed in the

document I have attached.

Also, the main reasons why T4 doesn't work is because it is a

mainly INACTIVE hormone and has to convert to the ACTIVE hormone

triiodothyronine (T3). T3 is the thyroid hormone that has to get into every

cell in the body and brain to make them work. There are many reasons why this

can't happen, and for such patients, they need either T3 adding to their T4, or

T3 alone. Some take the synthetic Liothyronine/Cytomel and others take it in

the form of natural thyroid extract.

Some of the reasons for this is that you might be suffering with

low adrenal reserve, systemic candidiasis or mercury poisoning caused through

amalgam fillings. To eliminate these, you need to get tested. You can get the

24 hour salivary adrenal profile and a test to see if you have systemic

candidiasis from Genova Diagnostics. I would highly recommend you get these

done (they are not done within the NHS). Go to our FILES SECTION on the Home

page of this forum. Open the FOLDER 'Discounts' and then open the file 'Genova

Diagnostics' and you will see TPA members are entitled to discounts on the

prices of these tests. Follow the information there, but5 don't forget to put

Thyroid patient Advocacy down as your 'Practitioner'.

you should also ask your GP to test your ferritin, vitamin B12,

vitamin D3, magnesium, folate, copper and zinc. If any of these are found to be

low in the ref. range, no amount of thyroid hormone can get into the cells.

Ask for these last 7 tests to be done by your GP and make sure

you put it in a letter form and ask for your letter of requests to be placed

into your medical notes. Doctors DO pay attention to anything their patient

puts down in writing, it is more than their life is worth to ignore it, because

if anything goes wrong and they have not taken into consideration your

requests, they could find themselves in serious trouble.

Good luck

Luv - Sheila

So he sent me for blood test and an chest xray and as i

suffer with kidney stones he sent me for a scan on the pelvic area.

and low and behold i had an under active thyroid

I went back to get more tablets and had to see another

doctor at the same surgery only to be told that haveing all these test done

that i was a strain on the NHS

I am now on 125 mg of T4 only and i still have so many

symptoms

Thanks for reading hope i have not bored you all to much

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1 of 1 File(s)

Why thyroid hormone stops working.doc

[Guest guest]

MODERATED TO REMOVE MOST OF PREVIOUS MESSAGE ALREADY READ. PLEASE REMEMBER TO

DELETE AS MUCH AS YOU CAN AND LEAVE JUST A SMALL PORTION OF WHAT YOU ARE

RESPONDING TO. LUV - SHEILA

______________________________________

Thankyou Sheila, i have just composed a letter to my doctor requesting a full

clinical examination, i will take my temp over the next 4 mornings and send the

letter off with those findings. Do you mind if i mention that i have been

advised by The thyroid patient advocacy(thought it might give my letter a bit

more clout)its ok if you would rather i did'nt.I would be very happy to see one

of your advisers i notice Dr Skinner is only in birmingham not too far too

travel but i will see how i get on with my own doctor and if no joy with him i

will be back in touch or insist on being refered to Dr Skinner. Thanks again for

all your help i will be in touch as soon as i get those test results for you. lv

Sue

>

> You need to write a letter to your doctor listing your symptoms and signs

> (check those on our web site <http://www.tpa-uk.org.uk> www.tpa-uk.org.uk

> ). Tell your doctor in the letter that you wish these to be taken into

> consideration together with a full clinical examination, family history,

> your own past medical history, and NOT to go on thyroid function tests ONLY.

> Thyroid function tests on their own do NOT show always whether you have

> normal or abnormal thyroid function. Thyroid function blood test results

> can be influenced by many of the factors, any of which your doctor should

> take into consideration, e.g.

>

> .

[Guest guest]

Hi Sue, Good luck. You can, if you wish, write that you have

been " recommended " by Thyroid Patient Advocacy " as we never try

to advise as we are not medically qualified, but we do try to

" recommend " . Subtle,, but there is such a difference.

Thankyou Sheila, i have just composed a letter to my doctor requesting a full

clinical examination, i will take my temp over the next 4 mornings and send the

letter off with those findings. Do you mind if i mention that i have been

advised by The thyroid patient advocacy(thought it might give my letter a bit

more clout)its ok if you would rather i did'nt.I would be very happy to see one

of your advisers i notice Dr Skinner is only in birmingham not too far too

travel but i will see how i get on with my own doctor and if no joy with him i

will be back in touch or insist on being refered to Dr Skinner. Thanks again

for all your help i will be in touch as soon as i get those test results for

you. lv Sue

[Guest guest]

I would write back and ask him SPECIFICALLY which of the blood

tests you mentioned he is unable to do, as all of these are available through

the NHS. I would even put it to him that you are aware that many GP's are

sending their patients to 'specialists' to get certain blood tests done to save

their outgoings, but if every GP did this, then the poor specialist budget

would soon be used up so patients would be unable to get these tests anywhere

within the NHS - which is a patient's right.

I would not make an appointment to be told the same thing over

again, but ask him to send you a written response to enable you to take this

matter further Don't see this as another 'brick wall' see it as your

RIGHT.

Luv - Sheila

Hi Sheila & All, I wrote to my GP as

suggested asking for the recommended blood tests to be done and got this reply

: Thankyou for your recent letter. Unfortunatly, we are not able to order several

of the tests that you have mentioned in your letter. These tests would normally

be undertaken by an endocrinologist. You are welcome to make an appointment to

discuss this with us at the surgery and we will endeavour to help you. Do i

make an appointment only to be told the same thing and then be refered to an

endoc at the local hospital whom i have already had dealings with and who

dismissed me as a patient after a biopsy on my goiter showed no cancerous cells

and he said mt blood test was fine, i believe he specialises in diabetes

although it does say on a search i did on him endocrinology and diabetes, so i

would prefer not to waste my time with him again. unfortunatly i think if i

asked for a referal to an endo of my choice & they are a private dr this

could end up being way to expensive for me to afford if i hav'nt got all the

test results to start with. Another brick wall!

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