Re: Mt first ever NHS endo appointment - disaster

[Guest guest]

Oh Brilliant!!

Some idiot who can't even get the right patient on the screen wants you to prove

you need meds.

Why?

Have you lost faith in Dr P then or are you just trying to prove a point with

the NHS? Did you get anywhere with the NHS before you went to Dr P?

I personally would run a mile....

.

> I was alarmed because my TSH has never been higher than 5. I looked at the top

of his screen and they weren't even MY results!!!! I

[Guest guest]

I know - ridiculous! I haven't lost faith in Dr P but I did want to see if I

could get T3 prescribed on the NHS, doesn't look like it. I didn't have any

treatment with the NHS for thyroid I took some advice and went straight to Dr P.

Trouble is I don't feel better....!

Wondering if I may feel better on T4/T3 combo, although I'd have to muddle

through on my own with it, IF I can get my GP to prescribe T4 to add to my

Cynomel.

>

> Oh Brilliant!!

>

> Some idiot who can't even get the right patient on the screen wants you to

prove you need meds.

>

[Guest guest]

Hi Hannah

Did you initially start on NDT and not do well on it, and is that why you are on

T3?

Many people seem to do well on T4. The problem I suppose is whether your GP

will even give you T4.

What were your results before you went on meds? If they were normal, the danger

is that the endo won't give you any meds, and you'll feel bad for a month and be

no further forward?

Have you checked your adrenals?

chris

>

> I know - ridiculous! I haven't lost faith in Dr P but I did want to see if I

could get T3 prescribed on the NHS, doesn't look like it. I didn't have any

treatment with the NHS for thyroid I took some advice and went straight to Dr P.

>

[Guest guest]

I was on NDT for quite a while, initially (the first week) felt better then went

downhill towards terrible. Dr P said I was T4 toxic and told me to do T3 only.

My results before I started were Genova 24hr urine test:

T3: 470 (800 - 2500)

T4: 973 (550 - 3160)

(This was before I was on ANYTHING).

Most recent blood test whilst on 25mcg T3 only:

TSH: 4.7

FT4: 6.9 (10 - 22)

FT3: 3.9 (2.8 - 6.5)

I'm wondering if:

a) I would feel better on T4 as well (I have some 50mcg tablets but have no idea

what to take?)

I am getting hyPerthyroid - symptoms: extreme weakness, very dry scratchy

eyes, constant headache, chronic depression, exhaustion.

On 15 Isocort for adrenals (have been for over a year)

Thanks

Hannah

>

> Hi Hannah

>

> Did you initially start on NDT and not do well on it, and is that why you are

on T3?

>

> Many people seem to do well on T4. The problem I suppose is whether your GP

will even give you T4.

>

> What were your results before you went on meds? If they were normal, the

danger is that the endo won't give you any meds, and you'll feel bad for a month

and be no further forward?

>

> Have you checked your adrenals?

>

> chris

[Guest guest]

Holy crap so many of them things sound like endo's ive seen on the NHS.

Especially the comment do you even have a thyroid problem we need to prove

it.....

Up to you if you would like to go back on T4 only, but why did you decide to go

on T3 only in the first place, the same reason its most probably best to stay on

on T3 ?

Steve

[Guest guest]

So... I didn't get anywhere. He's booked me in for an appointment in 3 months, my GP is to prescribe thyroxine until then (I've never been on it before). Should i go back? Should I try thyroxine? Any thoughts?

Hello Hannah,

Plenty! ...mostly to do with the endo you saw <g>

Should you go back? - only if you have a masochistic streak in you.....

Should you try thyroxine? ... well, that is a possibility, it depends how you want to play this. Levothyroxine does work for many.... although I have a feeling that trying Levo is not going to solve your particular problem – whatever that may be.

You say you have been on T3-only medication for over a year and you still feel unwell. This could have several reasons.... the following is copied from our files and relates to reasons for Levothyroxine (T4) not working, but the same goes for any kind of thyroid hormone, be it T4 only, NDT or T3 only. So you might need to go through each and every point and ask yourself if this might apply to you, have it checked and treated if applicable. The most common reasons why thyroid medication does not work is adrenal fatigue or low iron, but it could be any or a combination of the points made below.

There are MANY reasons and many medical conditions associated with thyroid disease that stop thyroid hormone from getting into the cells, where it does its work. I mention these over and over and over again - ad nauseum - people must be bored with the same old, same old but as each new member joins us, they need to know. The main condition responsible for stopping thyroid hormone from working, is, quite simply, a patients thyroxine dose is too low because the doctor or consultant refuses to increase it, because the serum thyroid function test results appear OK. Sometimes, the thyroxine dose is too high, yet patients still don't feel well. They continue to suffer. Some reasons for this:

They may be suffering with low adrenal reserve. The production of T4, its conversion to T3, and the receptor uptake requires a normal amount of adrenal hormones, notably, of course, cortisone. (Excess cortisone can shut production down, however.) This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again. But sometimes it doesn't. If the illness has been going on for a long time, the enzyme seems to fail. This conversion failure (inexplicably denied by many endocrinologists) means the thyroxine builds up, unconverted. So it doesn't work, and T4 toxicosis results. This makes the patient feel quite unwell, toxic, often with palpitations and chest pain. If provision of adrenal support doesn't remedy the situation, the final solution is the use of the active thyroid hormone, already converted, T3 - either synthetic or natural

Then, we have systemic candidiasis. This is where candida albicans, a yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine. Here, the candida sets up residence in the warmth and the dark, and demands to be fed. Loving sugars and starches, candida can make you suffer terrible sweet cravings. Candida can produce toxins which can cause very many symptoms of exhaustion, headache, general illness, and which interfere with the uptake of thyroid and adrenal treatment. Sometimes the levels - which we usually test for - can be very high, and make successful treatment difficult to achieve until adequately treated.

Then there is receptor resistance which could be a culprit. Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors, is downgraded - so the T3 won't go in. With slow build up of T3, with full adrenal support and adequate vitamins and minerals, the receptors do come on line again. But this can be quite a slow process, and care has to be taken to build the dose up gradually.

And then there are Food allergies. The most common food allergy is allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid. There may be other food allergies with this kind of effect, but information on these is scanty. Certainly allergic response to certain foods can affect adrenal function and imperil thyroid production and uptake.

Then we have hormone imbalances. The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly. An example of this we have seen already, with cortisone. But another example is the operation of sex hormones. The imbalance that occurs at the menopause with progesterone running down, and a relative dominance of oestrogen is a further case in point – oestrogen dominance downgrades production, transportation and uptake of thyroid hormones. This is why hypothyroidism may first appear at the menopause; the symptoms ascribed to this alone, which is then treated – often with extra oestrogen, making the whole thing worse. Deficiency in progesterone most especially needs to be dealt with, since it reverses oestrogen dominance, improves many menopausal symptoms like sweats and mood swings, and reverses osteoporosis. Happily natural progesterone cream is easily obtained: when used it has the added benefit of helping to stabilise adrenal function.

Then, we must never forget the possibility of mercury poisoning (through amalgam fillings) - low levels of ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc - all of which, if low, stop the thyroid hormone from being utilised by the cells - these have to be treated. Should your GP or endocrinologist try to tell you that there is no association between low levels of these specific minerals and vitamins and low thyroid status, print off the information at the bottom of this message to show him just some of the references to research/studies to show that there is.***

With best wishes,

Christia

[Guest guest]

This is the problem with not trying thyroxine first, but starting on something

like Armour.

I ran into problems with Armour, and Dr P suggested I was T4 toxic and proposed

trying T3. I tried the T3, but that was just the same - initially slight

improvement, but no further improvement as dosage increased. Eventually my

pulse and blood pressure were getting too high so I decided the T3 wasn't right

for me either.

As someone said recently on the group (sorry I can't find the message), because

T3-containing medications suppress TSH, whatever residual thyroid function you

have is suppressed, so you have to take sufficient Armour or T3 to make up for

it. I never managed to reach that stage with either Armour or T3 because of

side-effects.

I am currently trying thyroxine and have reached 100 mcg dosage, which isn't

much. I feel slightly more awake and the horrible feeling of impending doom I

used to have has gone, but as yet I can't really say whether thyroxine will be

the answer. I expect I may have to add some T3 to it eventually, as even a

small dose of T3 helped the muscle pain, whereas thyroxine hasn't done that so

far.

I am currently fighting with my GP practice to get a referral to an

endocrinologist. There is one from the recommended list locally - if only I can

get to see her!

By the way, those symptoms you describe as hyperthyroid are what I get when I am

hypothyroid!

Miriam

> I was on NDT for quite a while, initially (the first week) felt better then

went downhill towards terrible. Dr P said I was T4 toxic and told me to do T3

only. My results before I started were Genova 24hr urine test:

>

> T3: 470 (800 - 2500)

> T4: 973 (550 - 3160)

> (This was before I was on ANYTHING).

>

[Guest guest]

Hannah, if it is at all possible, don't go back this endoprat again.

Find another one who cares. I won't go into detail of what I think of this

uneducated man, but I would be interested to know just what you are suffering

when you say that you are still very unwell and taking 50mcgs T3. What are your

symptoms. What WAS your last thyroid function test results? post them here

together with the reference range for each test done.

Do you have test results for your iron, transferrin saturation%,

ferritin, vitamin B12, vitamin D3, magnesium, folate, copper and zinc? If so,

again, post them here, again with the ref. range. Check out the attached document

and go through all of these possibilities by way of a process of elimination. Something

is obviously going on in the background and we need to find out what it is that

is getting in the way you causing you to fell so unwell. Also, take your basal

temperature for 4 or 5 mornings before you get out of bed and let us know what

these are

I would be very tempted to report this endoprat for trying to

make you change your treatment according to the results of another patient's

thyroid test results, and for telling you to stop your T3 for four weeks just

to get another blood test done. This man is a complete danger to his patients.

Stopping your T3 will cause all your hypothyroid symptoms to come back, and the

ONLY result it will show when you have your thyroid function tested at that

time will be that both your free T4 and free T3 will be very low in the range.

Does he really believe that by stopping the T3 , in 4 weeks your results will

show that your thyroid function is 'normal'.

If this was me, I would decide which doctor I wanted to treat

me, either him, or Dr P. If you are under your present medication on the advice

of Dr P, then stay with him, and ask his advice about the possibility of

titrating your dose. I would most definitely NOT start on thyroxine-only.

Thyroxine is a prohormone that has to convert to the active T3 through the

liver, kidneys and other thyroid hormone receptors where conversion takes

places. The majority of the members on this forum are here because they

couldn't regain their normal health on T4-only….but that is up to you.

What medication are you taking for your adrenals and when was

this last increased?

Luv - Sheila

He pulled up my blood test results on the computer and started reading out my

most recent results - " last TSH was 13, down from 25, 12 prior to that

etc " . He then said he wanted to start me on thyroxine.

I was alarmed because my TSH has never been higher than 5. I looked at the top

of his screen and they weren't even MY results!!!! If I hadn't known better I'd

have been treated on someone else's results.... I told him he had the wrong person,

he quietly apologised and quickly moved on.

I had ready all my Genova thyroid and adrenal results for the last year, he

glanced at them and then said they were of no use as they weren't NHS blood

tests. He questioned whether I even have a thyroid problem and said that we

need to prove it. He told me to stop all the T3 for a month and then go back to

the GP for a bllod test to see if I am indeed hypothyroid.