I've just seen my first Endo. : So I've just had... - Thyroid UK

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I've just seen my first Endo.

Zuzka1 profile image
39 Replies

So I've just had my appointment and I feel like I've just jumped out of a washing machine!

I'm English and live in France. My French is not so good..... My Endo was French.

It was a very bizarre meeting and I'm not sure how I feel and about how she's going to treat me. She spoke in the thickest, hardest French I have ever heard so it was difficult for me.

I wrote out a list of my issues in French as a back up. I cannot begin to tell you how happy I was that I did that!!

She was a very fast person, in taking and everything.

She looked at my list and I don't think read it all but instanly declared I have a under active thyroid.....She then looked at my last bloods done two weeks ago. Straight away she said I have hasi.

She has upped my Levo to 100mg. She wants to see me in two months. I also have a new prescription for bloods to be done in two months time. She said the goal is to get my TSH to 0. She said I will ultimately probably end up on 175 Levo (I think that's what she said).

Like the adult I am I then dissolved into tears and she then changed towards me so much....she spoke in English suddenly and told me not to worry, that I am very ill but we are going to get me better!! We shall see.

What's your thoughts? I'm feeling a bit relieved and overwhelmed and sad and confused!

Thank you for any comments as always.

Marax

greygoose x

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Zuzka1
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Clutter profile image
Clutter

Maraphipps,

Presumably thyroid antibodies were high which is why your endo diagnosed autoimmune thyroid disease (Hashimoto's)which causes 90% of hypothyroidism. 100% gluten-free diet may improve symptoms and reduce antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

It's very refreshing that your endo wants TSH reduced to 0. Hopefully she will also take note of your FT4 and FT3 levels. Reducing your TSH to 0 will be helpful in reducing thyroid activity which will help reduce the frequency of Hashi flares.

_________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Zuzka1 profile image
Zuzka1 in reply toClutter

Hi Clutter,

Yeah my antibodies are 167 (-60) I think is the range?

Do you think upping my Levo is going to take away my fatigue?

On my prescription for bloods to be done in two months she's asked for:

Iron

Glucose

Cholesterol

T3

T4

TSH

D2 and D3

Calcium

And two other things that I can't read 😊

Clutter profile image
Clutter in reply toZuzka1

Maraphipps,

If your endo estimates you will eventually require 175mcg you must be very undermedicated. Dose increases should help but fatigue is unlikely to improve until you are optimally dosed.

That's a comprehensive range of tests. Hopefully the two you can't read are B12 and folate.

Zuzka1 profile image
Zuzka1 in reply toClutter

Then I guess my next question is how long will it take to get me to that? 😬

Clutter profile image
Clutter in reply toZuzka1

Marapipps,

It really depends whether your endo meant that you will need 175mcg in the near future or some years down the line. Dose increases are usually in 25mcg increments every 6-8 weeks.

What were your thyroid results before dose was increased to 100mcg?

Zuzka1 profile image
Zuzka1 in reply toClutter

Hi Clutter,

I am quite sure she means sooner rather than later.

Here in lies a small problem. After my last bloods two weeks ago my Dr upped my Levo to 87.5 the endo today didnt see that and she thinks im on 75mg hense putting me up 25mg to 100mg. Do you think I should up my dose by 25mg so i am then on 112.50mg for the next two months and explain top the endo next time I see her?

Its been said on here that Im massively under medicated :(

Clutter profile image
Clutter in reply toZuzka1

Maraphipps,

What were your thyroid results and ranges before dose was increased?

I don't think you should increase dose yet.

Zuzka1 profile image
Zuzka1 in reply toClutter

on the 16/09/16 my TSH was 5.045 (0.400 - 3.100)

Zuzka1 profile image
Zuzka1 in reply toZuzka1

sorry and the one before that was:

20/07/16

TSH 2.181 (0.400 - 3.100)

Clutter profile image
Clutter in reply toZuzka1

Maraphipps,

It's quite possible that 100mcg will be sufficient to bring TSH down to 0. If not, 112.5-125mcg is likely to be enough. I doubt you will need more for several years.

Zuzka1 profile image
Zuzka1 in reply toClutter

Ok so Endo thinks she's upping me by 25mg. Shall I just up that amount? I've only been on 82.5 for 2 weeks before that I was on 75mg for about two months....

Clutter profile image
Clutter in reply toZuzka1

Maraphipps,

You were only taking 87.5 for 2 weeks so I would stick with 100mcg until after your next blood test.

Zuzka1 profile image
Zuzka1 in reply toClutter

Ok. Thank you 😊

greygoose profile image
greygoose

Well, that all sounds very good! She sounds nice. So encouraging that she wants your TSH at zero, is testing T3, and vit D without being asked! Sounds like a very satisfactory appointment, to me. And, she speaks English!!! What more could you want. :)

Zuzka1 profile image
Zuzka1 in reply togreygoose

She was nice greygoose at the end, when I started to blub! Before that I felt like I was being told off my a headmistress :) She was very intense and quite overwhelming and to start with she was complaing that I am English and my French is poor (she has a point to be fair...

Yes, she said straight away we need to get my TSH to zero and I didnt ask for any of the other tests she prescribed it.

so ive a been in my Bonnet that is I type something now can you tell me if I'm right or wrong?

I feel dissapointed as I think I should (this is my bee and bonnet bit) be given T3.

BUT.

Am I right in then saying (this is where this illness gets confusing for me) that if I am given the correct level of T4 (my levo thats been prescribed) my body will then be able to convert the T4 into T3 thus the T3 can then stop me being so tired and help me loose weight with a controlled diet (slimming world and try Gluten Free)

Is that right? Should I ditch my desire for T3?

As always..........Thank you x

greygoose profile image
greygoose in reply toZuzka1

No, of course you shouldn't. You should keep an open mind about all possibilities. But, you have found someone that cares. My personal opinion is that you should at least try it her way to begin with, see how it goes, and give her the chance to find out for herself that it's not working.

Of course, it might work. I can't remember your labs, but before you were on such a silly little dose of levo that there wasn't a hope that it would do any good. Let this endo get your TSH down to zero - where it needs to be as you've got Hashi's - and see how you go from there. You conversion could well improve. Time will tell. As I've said before, you cannot rush things hormonal, you have to be patient and give them time to work. If you now go and start self-treating with T3, you will lose the goodwill of this new endo. It wouldn't be a good thing to do.

Don't worry about her attitude at the beginning of the appointment. Could be that she's nervous about meeting new patients, too. And professional French women do tend to be very intense. I've never met one that was laid-back right from the start. You have to get to know them. :)

greygoose profile image
greygoose in reply togreygoose

How long have you been living in France?

Zuzka1 profile image
Zuzka1 in reply togreygoose

I 100% will not take the T3 and I'm totally going to go with what she says. I'm guess I just want to know that her way at least has hope?

I'm much happier I have a specialist dealing with me here. I'm not one to go against the grain so to speak.

I see her again just before the appointment I've been given at the hospital so two months to go untill the next one.

X

greygoose profile image
greygoose in reply toZuzka1

Yes, there most certainly is hope. She sounds as if she knows what she's doing. :)

Zuzka1 profile image
Zuzka1 in reply togreygoose

Then hope I shall cling on to 😊😊😊

Fruitandnutcase profile image
Fruitandnutcase

I'm impressed - she wants your TSH to be zero. No one I saw when I was being treated ever bothered about that. That is good, not to mention T3 and vitamin D3 being tested without you having to beg - or as in my case, pay for it privately.

When people come on this site and ask what to expect from their first endo appointment I always say 'prepare to feel disappointed'. I have to say I never knew what I was expecting before I went - probably not much, certainly after my first visit - but on all but one of my endocrinologist appointments - I saw the senior consultant forthat one, the rest of the time I saw minions - anyway I mostly came away feeling somewhat flat and kind of disappointed.

If it's any help with your antibodies mine have greatly reduced after a year of being completely gluten free so you could always give that a try although it might not be all that easy in France. I think it was the GF Diet that helped but it could be that they were burning themselves out anyway.

Zuzka1 profile image
Zuzka1 in reply toFruitandnutcase

Your positive comment to her wanting me at zero is good. Thanx.

I'm going to sound really stupid now but want the levo deal with my symptoms?

I'm more than happy to try and go gluten free but I don't u dears tank the impact it will have?

Zuzka1 profile image
Zuzka1 in reply toZuzka1

And this is supposed to say ' I don't understand the impact it will have.....

shaws profile image
shawsAdministrator in reply toZuzka1

The antibodies attack your thyroid gland until you are hypothyroid and also wax and wane. Sometimes you feel hyper and other hypo. So going gluten-free reduces the antibodies and helps to make people feel better.

Levo will help your other clinical symptoms.

Zuzka1 profile image
Zuzka1 in reply toshaws

Then this I must try.

Thank you.

shaws profile image
shawsAdministrator in reply toZuzka1

This link might be helpful:-

hypothyroidmom.com/reversin...

Zuzka1 profile image
Zuzka1 in reply toshaws

Thank you 😊

Zuzka1 profile image
Zuzka1

Ok do I follow this Endos route and we hope just the T4 works for me....otherwise it's a more complicate route but I will get there in the end right?

Zuzka1 profile image
Zuzka1 in reply toZuzka1

I meant 'so' not 'do'

Jaie profile image
Jaie

I live in France and see a French Endo, my TSH has been 0.015 for years, it never changes and she seems quite happy with that. Where are you in France?

Zuzka1 profile image
Zuzka1 in reply toJaie

I'm assuming your saying that your level that low is a good thing?

I'm in Annecy. Where are you? 😃

Jaie profile image
Jaie in reply toZuzka1

My Endo is fine with it and I feel okay. I know Annecy well, we go skiing near there, I am in the Charente .

shaws profile image
shawsAdministrator

I think most of our members would take a trip to see her as we desperately need a decent Endo who wants the TSH to be 0.

Zuzka1 profile image
Zuzka1 in reply toshaws

Gosh. I didn't realise this was so not the normal..... Now I feel much happier 😃

shaws profile image
shawsAdministrator in reply toZuzka1

In the UK you aren't diagnosed until the TSH reaches 10, no matter how many clinical symptoms the person is suffering from.

Also many doctors believe that once TSH is 'in range' they stop increasing the dose. Say the range for TSH was

0.5 to 4.5/5.0. if you were around 4 they'd not increase dose. You really couldn't make it up.

Zuzka1 profile image
Zuzka1 in reply toshaws

There must be so many ill people? How do people cope with this? I can't. I really can't. I can't be like this. It's soul destroying.

Fruitandnutcase profile image
Fruitandnutcase in reply toZuzka1

You're right, there are so many ill people out there. I was overactive with Graves and was very ill by the time I was diagnosed - three months before I finally crumbled and luckily saw a doctor who knew at once what was wrong, I was told I 'needed a holiday' but at least if you are hyper (I think) you are more likely to be treated although as I say I was fobbed off.

Some poor people who are under active are told to 'eat less and exercise more', they are told there is nothing wrong or they are told they are stressed / depressed and offered antidepressants, all sorts of things.

The words I hate more than anything else are 'you're within the range' and 'your results are normal'.

They might be within the range but that is so wide here in the U.K. that you are really ill by the time you are not ithe range and yes your results might be normal but it might not be normal for you or they might be 'good' - again, good for the woman in the house next door but you're feeling really ill so they aren't good or normal for you.

So you can see why we are pretty impressed with your doctor. 😉

Zuzka1 profile image
Zuzka1 in reply toFruitandnutcase

Gosh. Yes I can. I really can. Makes me feel really really sad for other people tho. I feel sad for myself that I am ill like this. I hoping that sadness lifts once I learn more about this and if my treatment works. I'm normally a really upbeat, happy go lucky kinda person. This illness has totally knocked all of that out of me. My doctor also asked me if I am depressed. I said no but actually I think this whole thing is depressing....tho that's not the cause but I would say a definite symptom. .....

Fruitandnutcase profile image
Fruitandnutcase in reply toZuzka1

yes, I can remember thinking 'where is the me I used to be?' My first post on HU was to ask if I would ever feel normal again and yes I do. Or as normal as I'm ever likely to be and yes, there is a big difference between feeling depressed and finding things depressing.I really feel for all the poor souls who are told they are 'depressed' and offered pills when they are actually finding it depressing that their doctors don't believe their symptoms and want to treat them for depression rather than do something to sort their thyroid out.

I always say to people that you need to be kind to yourself. Your thyroid gland affects every part of your body even it it doesn't sho like broken arm or leg.

Make sure your vitamin B12, D, ferritin and folate are all high in their ranges, that helps your thyroid. Eat goodnourishing food, give up on snacks and fizzy drinks etc - I haven't had a bar of Fruit and Nut for over a year. I used to think fruit and nut was two of my five a day. I might have to change my on,one name now.

Good luck, do something thatma,es you feel good every day. I also kept a notebook and wrote brief note every day on how I was feeling even if I thought I hadn't changed much and it was amazing to see how much I'd improved over time, even if it didn't always feel like I had. ☀️

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