Re: Opinions needed!

[Guest guest]

Hi Jane,

I live in France too. I think that the answer to all this is do you feel better taking all the medecine you listed, or not. As for the business about the heart, I have found that I feel better doing the Iodine Protocol and taking T3, rather than T4, and one of the major improvement is the disappearance of heart flutters that I was having once or twice a day. IMO if you think that T3 might be damaging your heart consult the RT3-T3 group (see their site www.thyroid-rt3.com). They have very simple methods of working out if you are overdosing in T3 (taking your temperature and pulse for example). It might be that a simple reduction in T3 might solve the problem. I have also read that heart surgeons use T3 to STABILISE heart beats after heart operations. I don't have the reference to hand, but I can find it if you want. Did your doctor take your pulse when

you visited him? Do you feel out of breath or do you feel you have a pounding heart? Have you taken your own pulse? If you haven't gone through all that on what basis does this doctor think you have a problem with your heart and need an ECG apart from your thyroid hormone test results? If you have these symptoms are they due to t3 overdosing? Could it be an adrenals problem? Cortisol problems can make your pulse go funny and give you palpitations. Lack of iron can make you breathless.

My experience as a foreigner is that you have little chance of convincing a doctor that what you are doing is right. It's difficult enough convincing a doctor of the justness of your choices when you are in your own country, when you add the fact that you are a foreigner, it's too much to expect to be credible in their eyes. I have a kind of tacit arrangement with my doctor (who is also a foreigner) whereby he gives me the regular testing that I require and I don't ask him for anything compromising like a T3 or HC prescription. I do think, however, that he is surprised by the improvements in my condition, which is why I get away without a lecture when I go and see him. Sorry to be so depressing. Also, if you live in a rural area, doctors are few and far between. I have already fallen out with one. I can't afford to be annoyed with the only other doctor in the area in case I need his services for some other

kind of problem. So I tolerate this arrangement.

I have given up with specialists. When I go and see them I find the meeting is very biased in their favour. They are unhelpful and get paid for it to boot! Most of them are diabetes specialists and do thyroid "on the side". They make me feel like a free lunch.

Sorry to be so depressing, Good luck with what you do next.

MacGilchrist

From: Jane Tresco <jane-trescothick@...>thyroid treatment Sent: Thu, 14 April, 2011 10:25:03Subject: Opinions needed!

He says that I am overdosed with thyroid medication and has asked me to stop all of my medication, except the oestrogel and duphaston, for one month........he has concerns on the effect of all of the thyroid meds on my heart.

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..

[Guest guest]

MODERATED TO REMOVE DR'S NAME. Would you please respond to privately Jane

regarding the questions he asks about this doctor?

Luv - Sheila

________________________________________________

Hi Jane

I checked the archives and i think you said you were seeing Dr D before? Did

you find him helpful?

I was wondering if all your medications were prescribed by Dr D? If so do you

have faith in what he was doing and did you feel ok?

I guess it would be good to get a checkup to make sure you're not at danger of

heart problems , also I suppose you need to go with your instinct and how you

feel and see how you get on. didn't hertoghe write something like that long

term HRT wouldn't affect the glands ability to come back if medication was

withdrawn, but they would perform as poorly after withdrawing meds as they did

before?

if money were no object would you be seeing Dr D stil?

>

> Long story short!

> I am 52 and live in France where I was diagnosed with hypothyroidism in

> 2007.

> In early 2008 I went to see a doctor whose name I found on another

> thyroid website (now closed).

> His advice and treatment has been useful, but it is too expensive for me

> to continue seeing him.

>

[Guest guest]

i thought it'd be ok because the dr is named last year if you check the archive

? sorry!

>

> MODERATED TO REMOVE DR'S NAME. Would you please respond to privately

Jane regarding the questions he asks about this doctor?

> Luv - Sheila

> ________________________________________________

>

> Hi Jane

[Guest guest]

First, if you are taking hydrocortisone, you need to stop this

for at least 6 weeks prior to having the ACTH test otherwise, the results will

be flawed. Is the specialist aware that you are taking HC? Can you let us know

whether you took your thyroid hormone replacement on the morning you had your

blood drawn for your thyroid function tests? We always recommend that members

do not take any thyroid hormone replacement on the morning - so you need to

stop it all the night before as thyroid function test results will be flawed.

You are taking Cynomel and Thyroid-s, both of which contain T3. T3 peaks in the

blood a couple to four hours in the blood after taking it and then gradually

leaves your body. If you took it that morning, tell your consultant and ask him

if you could have another blood test done after stopping the meds the night before.

This would show a marked difference in your levels and probably he would not

stop you taking any for a month. This is an awful long time to stop taking T3

and could likely cause all of your symptoms of hypothyroidism to return.

Doctors should go by how a patient feels, not by blood test results only.

Do you have any palpitations or any other heart problems whilst

taking Cynomel and Thyroid-s? If you do not, I would not see this as being a

cause for concern. problem is doctors don't understand how the greater thyroid

system works - and your consultant sounds to be one of them.

Check out this consultants name on Google and check out his

specialism - I bet it's diabetes!

Luv - Sheila

I went to see my local doctor and had a blood test which showed:-

TSH <0.005 mUI/l

Free T3 6.5 ng/l (10.01 pmol/l )

Free T4 9.4 ng/l (12.00 pmol/l)

I have been taking the following:-

Thyroid-S 60mg - 3 per day

Cynomel 25mg - 2½ per day

Hydrocortisone 1omg - 2 per day

DHEA 15mg - 1 per day

Oestrogel (estradiol) - 3 doses per day

Duphaston 10mg - 1 per day

The last two are taken for 25 days of the month

I was referred to a specialist and saw him yesterday.

He says that I am overdosed with thyroid medication and has asked me to stop

all of my medication, except the oestrogel and duphaston, for one month.

I have an appointment to see him in a month when I will have further blood

tests, an ACTH simulation test and an ECG - he has concerns on the effect of

all of the thyroid meds on my heart.

What are your views on this?

Be good to hear what some of you think to my situation.

[Guest guest]

Hello Jane and welcome to our forum J

TSH <0.005 mUI/lFree T3 6.5 ng/l (10.01 pmol/l )Free T4 9.4 ng/l (12.00 pmol/l)I have been taking the following:-Thyroid-S 60mg - 3 per dayCynomel 25mg - 2½ per dayHydrocortisone 1omg - 2 per dayDHEA 15mg - 1 per dayOestrogel (estradiol) - 3 doses per dayDuphaston 10mg - 1 per dayThe last two are taken for 25 days of the monthI was referred to a specialist and saw him yesterday.He says that I am overdosed with thyroid medication and has asked me to stop all of my medication, except the oestrogel and duphaston, for one month.

I can see where this doctor is coming from, but before commenting – I am confused about the FT results you list above.... you quote ng/L, but then put a ref figure in pmol/L beside it ... and it is only a ref figure not a ref range.... If you were in the UK, I would roughly know the ranges, but since you are in France, I can't guess. I don't understand why the FT's and corresponding ref range should be quoted in different value denominations. This does not make sense. Would you please give us the responding ref ranges for the FT's to make the picture clearer? Without knowing the ranges any comments would be futile.

Also we would need to know – did you stop your thyroid medication 24 hours before the blood draw, or did you take the meds on the morning of the blood draw? The interpretation of the TFT results would be crucial to whether you had taken the meds on the morning or not.

Best wishes,

[Guest guest]

Hello

Thanks for your response.

Do I feel any different on all the medication - maybe slightly better,

but not a huge difference although I have lost about a stone in weight -

which has now stayed the same for about 18 months.

I do get breathless when I walk, jog or cycle uphill.

Heart palpitations? Difficult one as I sometimes wake up in the night

with my heart pounding, but it is usually because I am feeling very hot.

And yes the person I saw is a diabetes specialist doing thyroid on the

side................be interesting to see how good he is at dealing with

my situation.

Whereabouts in France are you? You may want to reply privately on that

one.

I am in a rural area which probable doesn't help, but I do have to say

that my local doctor is very good with most things. The trouble is

thyroid problems although very common are all treated the same by most

doctors.

Jane

>

> Hi Jane,

> I live in France too. I think that the answer to all this is do

you feel better

> taking all the medecine you listed, or not. As for the business

about the

> heart,

[Ed]

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms

of Use.

[Guest guest]

Hi

Thanks for your response

Yes the specialist is aware that I am taking, well just stopped taking

HC.

No I never take my thyroid meds on the morning of a blood test.

Heart palpitations - not sure on this one as I have woken at night with

my heart pounding usually when I am feeling very hot.

Yes diabetes specialist.

Regards

Jane

>

> First, if you are taking hydrocortisone, you need to stop this for at

least

> 6 weeks prior to having the ACTH test otherwise, the results will be

flawed.

> Is the specialist aware that you are taking HC? Can you let us know

whether

> you took your thyroid hormone replacement on the morning you had your

blood drawn

[Ed]

[Guest guest]

Hi

Thanks for the welcome and your response.

My blood test results show both ng/l and pmol/l.

The reference range for the ng/l is 2.40-5.00 and for the pmol/l 3.70-7.70.

Does that help?

I never take my thyroid meds on the morning of a blood test.

Regards

Jane

>

>

>

>

> Hello Jane and welcome to our forum J

>

>

>

> TSH <0.005 mUI/l

> Free T3 6.5 ng/l (10.01 pmol/l )

> Free T4 9.4 ng/l (12.00 pmol/l)

>

[Ed]

[Guest guest]

Hi again

Sorry should have said the ref range for Free T3 is 2.40-5.00 and 3.70-7.70 and

for Free T4 9.40-17.0 and 12.0-22.0

Jane

>

>

>

>

> Hello Jane and welcome to our forum J

>

>

>

> TSH <0.005 mUI/l

> Free T3 6.5 ng/l (10.01 pmol/l )

> Free T4 9.4 ng/l (12.00 pmol/l)

>

> I have been taking the following:-

[Ed]

[Guest guest]

Dear Jane,

According to your post you are taking 20 mg of HC a day. I have read on Stop The Thyroid Madness (I think!) that if you take a dose of HC over 15-20 mg you can shut down your adrenals. Since most people need about 25 mg per day this means that you can find yourself short. I had this experience. I started taking 5mg of HC and then upped it by 5mg every three to five days. When I got to 20 mg I felt worse than when I started. Feeling faint, palpitations, low energy, etc. I was advised to go straight to a full replacement dose of 25 mg/day. This solved the problem for me. You will not be able to tolerate T3 if your HC/cortisol is too low. You need to read www.stopthethyroidmadness.com. Also many people recommend splitting up HC through the day so as to avoid highs and lows and adrenal strain. The same thing for T3. I

take my T3 in four doses per day with my HC ( 5mg, 2.5mg, 2.5mg, 2.5mg). I used to take between 27.5 and 32.5 mg/day depending on stress to feel good. This would freak most doctors who think you won't be able to wean off, but now I'm down to 12.5 mg and intend to get off if for ever by the end of this year.

MacGilchrist

Hydrocortisone 1omg - 2 per day

..

[Guest guest]

Hello Jane,

Yes, thanks, that all makes sense now J

And thank you for confirming that you have not taken the meds on the morning of the blood draw (- and that is the right way to go about it, too).

TSH <0.005 mUI/lFree T3 6.5 ng/l (2.40 – 5.00 ng/l) or 10.01 pmol/l (3.70 – 7.70 pmol/l)

Free T4 9.4 ng/l (9.40 – 17.0 ng/l) or 12.00 pmol/l (12.0 - 22.0 pmol/l)

OK – now... when you look at your results above, you will see that your TSH is totally suppressed (which in itself does not matter at all, but seems to freak out doctors), and your FT3 is over the top, whilst your FT4 is barely in range. - You take 3 grains of Thyroid S plus 75 mcg of T3 per day....

So I can see why your endo says you are overdosed; you very likely are. But having said that, we are all individuals and the most important thing is not lab results but how you actually feel on all this medication. I assume that you do not have hyperthyroid symptoms (out of breath, tremors, jittery, aches and pains in arms and legs, palpitations etc)?

He says that I am overdosed with thyroid medication and has asked me to stop all of my medication, except the oestrogel and duphaston, for one month.Hmmm, I can see where he is coming from... stopping all thyroid medication for 4 weeks should have the effect of using up all the excess of thyroid hormones in your body and presumably he wants to see where your thyroid values `settle' and then you'd start again. Whilst the theory sounds good, I would be a little concerned about the practice.... do you still have a thyroid gland, and is it still able to work a little, or have you reached end-stage Hypothyroidism?

The thing is... we are all individuals, but talking averages, you are on a pretty high dose of thyroid medication. 3 grains of Thyroid S (1 grain = 60 mg) on its own is a `good' replacement dose of thyroid, but you are taking 75 mcg (you said mg, but I hope that's a typo J) of T3 in addition... and that is high and probably more than your body can cope with.

What happens when the body receives too much thyroid hormone is that the metabolism speeds up and the system is trying to rid itself of all the excessive hormones ASAP ... the body's system does that by putting the brakes on - instead of converting T4 into the useable form FT3, it converts the T4 and excessive T3 into the unusable form rT3 (reverse T3). rT3, however, together with FT3 shows up in a blood test only as FT3. rT3 is the mirror image of FT3, they have the same chemical formula, so unless specifically tested for, you won't know which proportion of it is the useable or unusable form. rT3, however, will block FT3 from getting into the cells and you might feel hypothyroid despite having `hyperthyroid' looking lab results.

I do not know if this is what is happening with you. You have not told us how you are actually feeling. I might have got it all wrong and you are feeling fine on your medication despite the appearance of the lab results. As I said, we are all individuals and our bodies all have different needs.

Your endo's worry about heart and adrenals is, however, justified in my view because your FT3 is over the top. It would not matter that your TSH is totally suppressed as long as FT4 and FT3 are inside their respective ref ranges – but your FT3 looks too high, and excessive thyroid hormones will put undue strain on your heart and might leach calcium from your bones and will put too much stress on your adrenals.

My greatest concern about stopping all hormones (except sex hormones) is with the HC. You are taking 20 mg HC/day and DHEA in addition and if you have taken those amounts for quite some time, I would strongly advice against stopping the HC suddenly. The stress on your adrenals would be high. Steroids should never be stopped suddenly. If you have to reduce, then reduce very gently, 5 mg per week or so. How slowly you'd have to do it would depend on the length of time you have been taking it. If it's been years, then I would wind down even slower. 20 mg HC is still a physiological dosage and it will not have caused your adrenals to shut down their own production, but they are now used to getting a helping hand and on the basis that the body needs on average 40-60 mg of cortisol just to get through a day, when you suddenly take 20 mg of that away, it will have quite an effect on your wellbeing even though your adrenals will still get some help in form of the extra sex hormones.

On the other hand – if your endo wants you to take an ACTH stimulation test, you would need to be off ALL steroid hormones (except thyroid hormone) as well as sex hormones for a total of 6 weeks, or the results will be invalidated. Take a look at this http://www.dundee.ac.uk/medther/tayendoweb/images/short%20synacthen%20test.pdf under `patient preparation' point 2.

It is difficult to know what to do, but if it were me, I would ask the endo if they would be prepared to test for rT3. I don't know if they will do this test in France, they won't do it on NHS here in the UK (but you can get a private test with Genova – even from France, but blood would have to go by courier, so the whole exercise would be expensive). If you had high rT3, then the way forward – from what I can gather – would be to clear the blockage with taking T3 alone for a few months. Perhaps stopping the thyroid meds would clear the system naturally of rT3, I would not know. But my worry is that if you had high rT3, then your body, despite "hyper" looking lab results, would in fact be already starved of thyroid hormones. So stopping it all for 4 weeks might send you really hypo.... – a difficult call to make without knowing 100% what is actually going on. – As I said, if you were feeling well on this amount of medication, then perhaps you are one of those people who just need a lot of thyroid hormones.... lab results are not the be all and end all.

I hope I haven't muddied the waters too much.

With best wishes,

[Guest guest]

Hello

Thank you again for your reply.

Firstly I have been in touch with the doctor I saw in Paris and he has said to

not do what the other doctor has advised - I intend to email him again after

finishing this message and when I have managed to compose my message to him in

French!

He says I should reduce my thyroid meds by 20%, stop the HC, but if I have any

allergies to start taking it again - I will check with him about reducing HC

gradually.

So how do I feel?

Well I don't think that I have ever felt that bad.

With moving to France (2004), not doing any regular exercise and of course

getting older and going into the menopause I didn't know that I had a thyroid

problem. I did find that I felt the cold, everyone else would be in shorts and

t-shirts in the evenings and I would have a blanket wrapped around my legs. I

also put some weight on which I have lost again since changing to Thyroid-S. I

don't tend to feel the cold so much. I find that if I am very hot in the night I

will wake up with my heart pounding, but apart from that would not say that I

suffer from palpitations. I do seem to get out of breath when cycling or

jogging uphill, but this seems to be improving with the more exercise that I do.

I have a resting pulse rate of around 60 - it had gone up to about 70, so looks

like it has gone down again. I do have shaky hands occasionally. I do not feel

jittery or suffer with any aches and pains in my arms or legs.

I have been taking 2½ Cynomel per day and they are 0.025mg.

I do still have a thyroid gland.

I will ask about a test for rT3.

Regards

Jane

>

>

> Hello Jane,

>

> Yes, thanks, that all makes sense now J

>

> And thank you for confirming that you have not taken the meds on the

> morning of the blood draw (- and that is the right way to go about it,

> too).

>

[Ed]