First Endo meeting and conf: Hi How is everyone... - Thyroid UK

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First Endo meeting and conf

LottieAnne15 profile image
14 Replies

Hi

How is everyone?

Well had my very first Endo appointment last Friday. I've been underactive for over 20 years. It lasted about 5/10 minutes. He looked at my thyroid scan and said I have only small amount of thyroid left so only need 100mcg Levothyroxine at most, and when I was on 150 Levo over a year ago it was too much. Tried explaining that I am having difficulty upping my dose from 50 to 75. Was told take 75 every other day. Didn't bother explaining I had already tried that as felt he wouldn't believe me. So still feel I am getting nowhere fast. He wrote out 3 blood test forms to be done November, February and May. And that was it.

Oh and found out I have Autoimmune thyroiditis because of my scan.

sorry it's a long post but thankyou for reading.

Anne

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LottieAnne15
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14 Replies
shaws profile image
shawsAdministrator

You must have been underwhelmed with his response. I don't understand his response "He looked at my thyroid scan and said I have only small amount of thyroid left so only need 100mcg Levothyroxine at most".

I am not medically qualified but as you have a small amount of thyroid gland left, why would you need less levothyroxine than someone with a larger gland? After all if your thyroid gland is smaller, surely it is producing less hormones than if larger?

I assume he didn't ask how you felt, after all hypothyroidism is supposed to be so easy to prescribe for, that all doctors are capable of giving a prescription.

We go to Endocrinologists expecting some expertise in that they will help to remove any or all of miserable clinical symptoms. Unfortunately, it would appear they don't know any at all or how to relieve them.

I am sorry you are disappointed and you have a right to be and I don't think you have confidence in him.

greygoose profile image
greygoose

He was making it up as he went along, in an attempt to convince that he knows more than he does. Totally out of his depth! Like most of them. Endos are less and less worth bothering with, if you have a thyroid problem.

LottieAnne15 profile image
LottieAnne15

I was totally disappointed. Being slow thinking as I am lately I didn't really think about it until I got home. I keep thinking if my thyroid has shrunk so small as they say how can it make enough hormone for my body. And he was a professor!!

greygoose profile image
greygoose in reply toLottieAnne15

No wonder they're all so dim! :(

Clutter profile image
Clutter

LottieAnne15,

Are you taking the same make of Levothyroxine as when you were taking 150mcg?

Do you have results for ferritin or iron? Low iron/ferritin are commonly why people have difficulty raising dose.

LottieAnne15 profile image
LottieAnne15 in reply toClutter

Hi clutter

yes same make as before. He said my iron is slightly low as well but yet again haven't been offered anything for it.

Clutter profile image
Clutter in reply toLottieAnne15

LottieAnne15,

Perhaps you should find out how low. You can supplement iron taken with 1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine.

When iron is better you may be able to increase Levothyroxine dose.

LottieAnne15 profile image
LottieAnne15 in reply toClutter

Yes will try that thankyou.

SlowDragon profile image
SlowDragonAdministrator

So you have Hashimoto's- important to test vitamin D, folate , ferritin and B12 then

If they are too low they stop Thyroid hormones working. Have these been tested, if not ask that they are.

Always get actual results and ranges on all blood tests

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers. DIY finger prick test or option to pay extra for private blood draw or

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.

Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

scdlifestyle.com/2014/08/th...

LottieAnne15 profile image
LottieAnne15 in reply toSlowDragon

Hi slow dragon

I did have the other blood test done a few weeks ago but was told they were fine.

I am going to try going gluten free and see if that helps.

I don't think being on a steroid inhaler helps with thyroxine absorption as that is when my tsh has risen since I started that.

SlowDragon profile image
SlowDragonAdministrator in reply toLottieAnne15

Always get actual results, never believe "fine, normal"

You are legally entitled to them

Eg vitamin D at 52nmol is in range, but not high enough if on Levo

B12 range is very wide - typically 210-680 if you results are anywhere in range GP would say fine, but we need B12 near top of range and certainly above 500

Ferritin must be at least half way in range

Etc etc

ilenuca profile image
ilenuca

How did You feel when you increased the dose from 50 to 75? I had palpitation every day for about 3 weeks upping from 62 to 75.

LottieAnne15 profile image
LottieAnne15 in reply toilenuca

Hi Ilenuca

when I increase to 75 levo my breathing gets worse, my chest feels tight and I get dizzy spells. My constipation gets worse and I get chronic back pain amongst other things. I wouldn't mind if I knew it would get better but can only stand it for about 2 weeks as don't want to be in and out of hospital with breathing problems again

LottieAnne15 profile image
LottieAnne15

Cannot believe I have had another appointment letter to see Endo. The appointment is for May 2018. Feel like they are not bothered in trying to help me. Have just given me blood test forms and left me to it basically. We are not people to them just numbers.

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