Re: New member looking for advice.

[Guest guest]

Dear

Don't

ever allow your GP to intimidate you in this way. Whenever a patient has been

given a diagnosis and prescribed L-thyroxine-only therapy, but continues

suffering symptoms and s/he refuses either to increase your dose or give you a

trial of the active thyroid hormone T3, whether in combination with thyroxine,

T3 alone or natural thyroid extract - or they refuse you a referral to an

endocrinologist- then consider writing a letter to her/him. Adapt the letter below

according to your specific needs. You may wish to send a copy of your letter to

the Head of Practice too, but remember to keep a copy for yourself in case this

needs to be referred to at any time. Ask that your doctor place your letter

into your Medical Notes and that he writes to you confirming that this has been

done.

Dear

Doctor

As

I have been suffering with symptoms of hypothyroidism for a long time now and

have had various titrations of my levothyroxine, without my symptoms being

resolved, and without anybody apparently knowing why these have not been

resolved, 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 on our web site www.tpa-uk.org.uk ). Regarding the

difficulty I am experiencing in taking in a good breath, I have enclosed an

article written by Dr Lowe and would appreciate your comments regarding

this (http://www.drlowe.com/jcl/comentry/breathingproblems.htm 

- print off the relevant part of this and enclose it Diane)

My

basal temperatures before getting out of bed for the past 4 mornings, and

before having anything to drink have been (here, list these if they were

97.8 degrees F (36.6 degrees C) – or less.

Please

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

free T4, free T3, TPO and TgAb. I am not prepared to continue to suffer these

symptoms for another three months just to wait and see what my results show at

that time. I am aware that my free T3 is too low - when taking thyroid hormone

replacement, fT3 should be in the upper third of the reference range, and it is

at the bottom and my TSH is once again rising. I also appreciate that thyroid

function tests results ONLY show the level of thyroid hormone that is in the

blood. Blood tests do not detect Type 2 Hypothyroidism (Euthyroid Hypometabolism)

.. Dr Boc and Dr Mark Starr define 'Type 2' hypothyroidism as peripheral

resistance to thyroid hormone at the cellular level - and these patients need

the active thyroid hormone T3. Please will you accept that I may be one of the

250,000 sufferers in the UK who cannot regain their normal health on the mainly

inactive L-thyroxine and give me a trial of T3.

I

also request the following specific minerals and vitamins are tested to check whether

any of them are low in the reference range. If any of these are low, this could

stop thyroid hormone from being fully utilised at the cellular level until

whatever is low has been fully supplemented. These specific mins/vits. are iron,

transferrin saturation%, ferritin, vitamin B12, vitamin D3, magnesium, folate,

copper and zinc. (If your doctor doesn’t know about these, or you feel

s/he will try to tell you there is no connection between these and low thyroid,

please copy out the references at the end of this message to show your doctor

that there is a connection). Please would you make the thyroid function

results and these results available to me together with the reference range for

each test done? (If any are shown to be low in the range, these will need to

be supplemented before the thyroid hormone will work).

(You

do not have to give any reason to a doctor why you want these results. Also,

please remember that doctors cannot withhold any information that is in your

medical notes under The Date Protection Act 1998).

I

would now 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 to be taken into consideration in the

hope of being given a trial of the active thyroid hormone T3, either synthetic

Liothyronine or natural thyroid extract and would like to be referred to Dr

****** at ********Hospital. (Diane, I have sent you a list of these doctors

- you may have to travel well outside your area, but this would be well worth

it)

Please will you place this letter of requests in my Medical

Records and give me written confirmation that this has been done?

I look forward to hearing from you in due course.

Kind regards

References:

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 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

http://www.ithyroid.com/copper.htm

http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm

http://www.ithyroid.com/copper.htm

http://www.rjpbcs.com/pdf/2011_2(2)/68.pdf

http://ajplegacy.physiology.org/content/171/3/652.extract

Low 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

I phoned the start of August to ask for a check up and was told no and that the

lab would refuse to test because it hadn't been 3 months, I knew he was lying

but he wouldn't listen and didn't care about any symptoms I was having. The

test eventually in September showed my TSH was 2.22. I phoned to speak to a Dr

and asked what my T3 levels were and was told they didn't get tested, talked

them eventually into testing that. The results were TSH 3.98, Free Thyroxine

17.6, Total T3 1.3. He said I was verging on being hypo and to get another

blood test in a few months. I told him all my symptoms but he didn't want to

listen and told him the meds weren't working.

[Guest guest]

Hello Diane,

Further to Sheila's excellent advice there is little to say.... - you will be surprised how powerful and effective a well thought-out letter of complaint can be. Don't be afraid to put your foot down. Surprisingly that usually has the desired effect. You are being treated appallingly and your doctor has a duty to care.... he doesn't – so do something about it. Believe me, it feels good

However, I would like to add a few thoughts of my own, if I may ... bearing in mind that those are my personal feelings about your situation and it's not something written in stone.

Everybody I have spoken to over the past umpteen years who has had a thyroidectomy did – without exception - not do well on Levothyroxine alone. They were complaining about similar symptoms to yours... weight gain, brain fog and aches and pains. Few did well on a Levo/T3 combo, although that was better than Levo alone; but most did well on natural desiccated thyroid like Armour, Erfa or one of the others.... although it had to be introduced very gently in most cases, often starting with a dose of ¼ grain instead of ½ grain and increasing slowly and carefully.

Personally I am sick and tired of our doctors' general attitudes – about their toeing the party line and ignoring the use (or existence) of NDT (that's `natural desiccated thyroid') and spreading lies about the use of T3. I am all for giving them two fingers and taking our health into our own hands or at least to be proactive and not taking more s**t from the medical establishment. I haven't got the patience anymore to battle it out. NDT does not cost the earth and it is freely available for us in the UK; plus we have the knowledge of how to use it correctly. – It does not work for everybody across the board, but it works well for most people who haven't got a thyroid gland anymore. So it is certainly something worthwhile to look into.

If you wanted to go down that route, we are all here to guide you along. It can't get worse than what you have already experienced, so it's worth a thought.

With best wishes,

[Guest guest]

Hiya,

Thank you so much for the advice, the NDT certainly sounds good so I'll be sure

to mention that when I go in armed with the letter and some extra info.

I am hoping that I just haven't found and understanding doctor yet at the

practice and hoping I can get further with a female as the one I am going to ask

for listens to you.

I will let you know what happened after I get my appointment.

The only thing that concerns me about getting to see a specialist is it would

probably be the same one I saw before I had my thyroid removed. I had got in

touch with him to say that I wasn't happy the GP wouldn't test me before 3

months were up and he sided with the GP regardless of any symptoms I was having.

I'll cross that bridge if it happens but no doubt I could ask for a different

specialist.

Speak soon.

Diane

[Guest guest]

Diane, it is pointless having your thyroid function tested until

you have been taking thyroxine for at least 6 weeks, or even longer. Thyroxine

has a long half life, and it can take up to 6 weeks for the thyroxine to be

fully utilised at the cellular level. Don't be cross with your GP or

endocrinologists, it is usual to get thyroid function tests around every three

months.

Are you already taking thyroxine-only and if so, how much are

you taking and how long have you been taking it. We have so many members it is

impossible to remember everybody.

Luv - Sheila

I am hoping that I just haven't found and understanding doctor yet at the

practice and hoping I can get further with a female as the one I am going to ask

for listens to you.

I will let you know what happened after I get my appointment.

The only thing that concerns me about getting to see a specialist is it would

probably be the same one I saw before I had my thyroid removed. I had got in

touch with him to say that I wasn't happy the GP wouldn't test me before 3

months were up and he sided with the GP regardless of any symptoms I was

having. I'll cross that bridge if it happens but no doubt I could ask for a

different specialist.

[Guest guest]

Hiya,

I had been started on 100mcg of the Levo on April 28th, that was when I had the

thyroidectomy. In the first week of June I was tested by the GP and the TSH came

back as 14 so they increased it up to 125mcg, that was when they said to come

back in 3 months. It was around 8 weeks after that I asked them to repeat the

tests because of how I felt and they refused. You would think if it takes 6

weeks for it to get into the cells and work properly they might check at 8

weeks, 3 months is such a long time when you feel rotten.

I like the sound of the NDT and think I'll probably try to get the GP to

prescribe that till I can see a specialist, along with the other tests that

haven't been done. Does anyone know if you are taking NDT if you still might

need to take T3.

Thanks

Diane

[Guest guest]

Hi Diane

It's all a bit tricky when doctors ONLY pay attention to thyroid

function blood test results - they leave patients to suffer symptoms so

unnecessarily. When increasing thyroid hormone replacement, it can take

several weeks for the Thyroid Stimulating Hormone (TSH) to show any changes.

The majority of doctors will ONLY titrate dosage by TSH results - so this will

be the reason why they are wanting you to wait 3 months.

Luv - Sheila

Hiya,

I had been started on 100mcg of the Levo on April 28th, that was when I had the

thyroidectomy. In the first week of June I was tested by the GP and the TSH

came back as 14 so they increased it up to 125mcg, that was when they said to

come back in 3 months. It was around 8 weeks after that I asked them to repeat

the tests because of how I felt and they refused. You would think if it takes 6

weeks for it to get into the cells and work properly they might check at 8

weeks, 3 months is such a long time when you feel rotten.

I like the sound of the NDT and think I'll probably try to get the GP to

prescribe that till I can see a specialist, along with the other tests that

haven't been done. Does anyone know if you are taking NDT if you still might

need to take T3.

Thanks

Diane

[Guest guest]

Hi Dianne

Re: New member looking for advice.

Well you might need more t3, but generally people get worried that there might

be too much T3 in NT, some people take extra t4 to balance it out, some take

NT on it's own and some need more t3.

The t4 alone, clearly isn't working so you either need t3 (liothyronine)

adding, or NT. The docs will prpbably want to go down the T3 route as the NT

scares some of them silly because there is no money to be made from it.

You have obviously worked out that your doctors are more inclined to go by test

results than symptoms.

You can get better once you have the right meds but you may need to argue your

case..... suggest you read Your Thyroid And How To Keep It Healthy by Dr

peatfield..... useful info even if you don't have a thyroid..

There's also loads of info in the files section...

thyroid treatment/files/

>

Does anyone know if you are taking NDT if you still might need to take T3.

>

[Guest guest]

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MODERATOR

Hiya,

I adjusted the letter I'm going to take into the GP and have made it more for

NDT rather than getting some T3 added into the Levo, I like the sound of the NDT

and also like the idea of being more in control of my own health. I've also got

all the other asks for vit/mins as well as adrenal tests. Couldn't believe it

was a holiday today after getting worked up about a possible refusal or them

just not wanting to listen to me. Oh well, I'll try tomorrow.

Sheila where do I find the list of recommended doctors, I've looked everywhere

and can't find it.

Diane

[Guest guest]

Hiya,

I've got an appointment with my GP today and going to ask for all the vitamin,

mineral, thyroid and adrenal tests to be done.

I am going to ask to go on NDT but I'm not holding out much hope. I phoned

around loads of chemists in Dundee and not one of them had ever dispensed or

heard of any of the NDTs. I also phoned the main hospital and spoke to the

pharmacy dept, they had never heard of it either and directed me to the medicine

stores who checked their computers. Surprise, surprise they have never ever

stocked any type of NDT, which means no endocrinologist has ever prescribed that

for a patient.

Would be good if I could find anyone anywhere near me that gets it and where

they get it from.

The thing also that has had me thinking is, if certain vitamins, minerals and

adrenals are not running at their best and need support it can have an effect on

the thyroid. I was diagnosed with Graves and goitre in October last year and

then had a thyroidectomy in April. If my vits/mins etc were not right could that

have caused any of these problems and could I have avoided an operation if these

were needing help and got supplemented?

Diane