RE: Need to come clean with endo

[Guest guest]

I changed over from Erfa in October shortly after seeing the endoto trial out T3 only as I felt I could be suffering from reverse T3.Well it all went reasonably well and I attempted to switch back to Erfa in Marchbut didn't feel as good so decided to stick with the T3 only.

Will my blood tests reveal that my T4 istoo low and cause suspicion if i decide not to say anything?

Hi Lizzie,

I'm afraid it is very likely that the blood result will reveal all.... with people on any kind of natural thyroid (like Erfa) you'd expect to see a suppressed TSH, a low-ish to mid-range FT4 and a high-ish FT3.

The blood results when on T3-only would likely show a suppressed TSH, a FT4 well below the lower ref range and a high-ish FT3. Since your endo seems to have an understanding of Erfa and has prescribed it for you, I would expect him to know what he is looking at when he sees the results.

Sadly I can't help you with the dilemma with your endo. It is a pity that you felt you could not discuss your switching to T3-only with him at the time. The decision what to do now is difficult.

I would not recommend it, but if you wanted to say nothing for the time being, it might work to reduce the T3 by a smidgen and add in 25 mcg of Levothyroxine for a few days before the blood draw and even take some T4 (only) 2-3 hours before the blood draw, as that should push up the FT4 figure (and the FT3 figure too - though only marginally), but in my experience cheating is always short lived - never the answer. It would be far better to grab the nettle with both hands and explain to your endo what you have done and why.

As for the leg cramps – have you tried supplementing Magnesium citrate (about 500 mg per day in divided doses)?

Good luck,

[Guest guest]

In fact I am still confused as to what is the best route of treatment. I still get the leg cramps I had before perhaps not as often but it doesn't seem to matter what treatment I have they never fully disappear.

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I had leg cramps as a teenager, again along with Fibromyalgia. They finally disappeared with sufficient old Armour/now Erfa (5 grains), but I still need to watch my potassium sodium ratio as when I overdo cramps can still happen. I still take the occasional potassium pill.

Fibrojay

[Guest guest]

I Lizzie - I think first and foremost, you appear to be pretty

good at the moment after all you have been through to get to this point, but it

appears to be a mystery as to why you are still getting the occasional leg

cramps. Clearly, something has worked - and I think the time has come to have a

good chat with your endocrinologists and be up front with him right from the

start. Never, never forget that doctors and patients need to work together in

finding out what works best for the patient. In

'the duties of a doctor registered with the General Medical Council http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp

, it states

Work

in partnership with patients

o

Listen to patients and respond to their

concerns and preferences

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

o

The more you keep secret from your doctor about how you have

changed your medication the more you are going to worry and the more difficult

it is going to become to ever resolve this problem. If this was me, I would go

in and when he first asks me how I am, I would tell him I was feeling much

better since the last time you saw him, but that you found you had to

experiment by increasing your dose of T3 until you found the dosage that worked

best for you. Give him the details of how you did this and how you got to a

point when you wondered if the time was right to now go back onto Erfa only,

but that you had problems with it. I would tell him that you had to buy your

extra T3 on-line from a reputable pharmacy. Tell him that you did much

research, especially of Nicks web site and pass the link to him http://www.thyroid-rt3.com so he can read

the information you have been following. He will probably be very grateful.

Tell him of your experiment to get back onto Erfa but that you

still appear to need the amount of T3 you are taking and that if you lower your

dose, back come all your symptoms again.

A good doctor will entirely understand what you have felt the

need to do. Tell him that you have found that there are many, many sufferers of

rT3 who need very high doses of T3 and that you now need his professional input

as to the best way to go forward from here.

As far as your cramps are concerned, are you still taking magnesium,

if not, try the experiment, you probably need a pretty high dose e.g. 600mgs

and see if that helps you.

Good luck Lizzie, once you have got this out of the way, you

will feel at peace with yourself and wonder why you were worrying. An

endocrinologist who will prescribe natural thyroid extract for his patients

with the RCP and BTA frowning down on them obviously knows a little more about

patients continued suffering with the symptoms of hypothyroidism when on the

NHS recommended T4-only treatment and feel the need to help them - so I doubt

you will have little to worry about.

If he prescribes the T3 you need and not the Erfa - you can

always buy 500 tablets of Erfa from www.valuepharmaceuticals.com to

keep in, should you need it.

It always pays to be honest with your doctor from the start.

Luv - Sheila

Hi Everyone,

I haven't been around for a while mainly because I have felt not too bad. Just

to update you, I changed over from Erfa in October shortly after seeing the

endo to trial out T3 only as I felt I could be suffering from reverse T3.

Well it all went reasonably well and I attempted to switch back to Erfa in

March but didn't feel as good so decided to stick with the T3 only.

I am very worried though as my endo is completely unaware that I have done this

and I am due to see him mid June. He very kindly prescribed Erfa for me for

which I am grateful. In fact I am still confused as to what is the best route

of treatment. I still get the leg cramps I had before perhaps not as often but

it doesn't seem to matter what treatment I have they never fully disappear. One

part of me is thinking, don't tell him then you won't lose the Erfa so if you

want to try swapping back again that option is open, but then I will have to

keep on buying the T3 in the meantime. Will my blood tests reveal that my T4 is

too low and cause suspicion if i decide not to say anything?

I am still trying to find the correct dose of T3 that takes away all my

symptoms, I am keeping an eye on my temperature and at the moment I am on the

2nd day of 82.25 mcg of cynomel in 4 split doses. I have increased only 6.25

mcg from 75 mcg. when I increased to 75 mcg my daily temp picked up to 37 for a

few days but then dropped to 36.7 and this instigated me to try a further

increase. My temperature has not picked up yet 36.8 in the morning, lunch time

but then drops in the afternoon to 36.5. This is causing me to wonder if my

adrenals can't cope by the afternoon or if I need to split the doses up more.

It's all very confusing isn't it.

any advice would be welcome please.

Love Lizzie