Feel blessed to have been referred to an endo - Thyroid UK

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Feel blessed to have been referred to an endo

Numberone1 profile image
13 Replies

I have finally managed to get a referral to who I think is a very good endo. Most people with underactive thyroids don't seem to get referrals and now Im a bit scared of wasting the appointment by asking the wrong questions, explaining my situation etc.

What are peoples experience of being referred with hypothyroidism and as I currently self medicate, I.m scared he wont understand.

Are there any extra tests I should ask for? For example Ive done my own antibodies blood test and they are very high. Also my FT3 is very high but alongside a high TSH.

Thanking you in advance. As I said, I don't want to waste the appointment and need to ask the right questions.

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Numberone1
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Clutter profile image
Clutter

Numberone1,

I think the most important thing to establish is why you have high FT3 and high TSH.

You don't have to establish "hypo credentials" by listing hundreds of symptoms, it is sufficient to mention the most debilitating or uncomfortable symptoms which make daily living difficult. A bullet point list may be helpful and a separate list of the meds and supplements you take.

If weight is an issue it is helpful to say that I eat x calories a day, exercise x hours a day/week running, pilates, swimming, gym etc. but I'm unable to move weight or am gaining. If fatigue is a problem say you sleep x hours a night but are so fatigued you have to nap x hours in the afternoon/evening.

Numberone1 profile image
Numberone1 in reply to Clutter

When my GP referred me he has no idea about the high TSH, high FT3. Not sure why he gave in eventually. Every time I try to speak to him about it he tells me outright he doesn't want to know. Therefore I feel blessed to be referred because then I can speak to a man who might know and do the tests necessary to determine the reason for those figures.

Weight is my main issue. Even on that subject my GP said "just eat less". Eat less of what? Nothing? Obviously I don't eat nothing but as an example, today so far at 12.40pm, all I have eaten is a cube of cheese.

Clutter profile image
Clutter in reply to Numberone1

Numberone1,

Without knowing the size of the cube of cheese how can one tell whether you have eaten a little or a lot? That's why stating x calories consumed and the type and duration of exercise undertaken is more helpful. Don't expect much help from an endo re weight, they aren't nutritionists and are more focussed on getting and keeping blood levels within range.

Numberone1 profile image
Numberone1 in reply to Clutter

I know its not important but the cube of cheese was about 1" square.

See my problem?

Clutter profile image
Clutter in reply to Numberone1

Numberone1,

I don't really because I have a problem with low weight and have never had to calorie count or watch portion sizes. My point was to be specific when talking to doctors about how much/little you eat and the amount of exercise you take with respect to weight gain/loss.

Greenwall profile image
Greenwall

I wonder if we scare GP's by knowing more than they do, and so they just want us out the door asap???

Re wt. From my readings, it would seem that if you starve yourself, then the body goes into famine mode and slows down the metabolic rate. Result no wt loss. Celery burns more cals than you gain from it. I think we're supposed to eat regularly to avoid ups and downs in sugar levels, otherwise we can upset the adrenal system.

This probably doesn't help....

Numberone1 profile image
Numberone1 in reply to Greenwall

Thank you for that. You're right, it doesn't help because Ive tried everything. The weird thing is that my weight doesn't shift whether I eat loads or not much atall. I am sure my thyroid is causing this but who knows and I guess the endo won't be able to tell me. But if I can get my levels right then that might help. Ive just come back from a cruise and only put on 11b which has obviously already disappeared.

greygoose profile image
greygoose in reply to Numberone1

Do you eat unfermented soy?

Numberone1 profile image
Numberone1 in reply to greygoose

No. Why? Should I?

greygoose profile image
greygoose in reply to Numberone1

Well, you shouldn't. lol That's the whole point. But, if you did, it would stop your T3 being taken up into the cells, and could be the reason for you high FT3 and high TSH. Just a thought.

Numberone1 profile image
Numberone1 in reply to greygoose

No I definitely don't. My personal belief is that I was put on Atenolol and it has stopped me absorbing the T3. Ive finally managed to persuade my doctor to let me come off it. The figures only became what they did after I started taking it.

greygoose profile image
greygoose in reply to Numberone1

Beta Blockers normally lower T3 levels, but they Don't stop absorption. And Atenolol isn't supposed to have any effect on it at all.

Still, now you're off it, you see if you go back to the way you were. :)

SmallBlueThing profile image
SmallBlueThing in reply to Numberone1

My TSH wouldn't shift, despite increasing dose of Levothyroxine, while I was on a low dose of Atenolol for about six months.

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