Worried about endo visit tomorrow

[Guest guest]

I've not got a question, just wanted to post as I'm getting very nervous. I

have an appointment with my endocrinologist tomorrow to review how the 25 mg

levothyroxine he has prescribed ( low dose due to heartattack last year) has

affected my tsh. I'm hoping he now agrees to keep me on it and up the dose. He

reckons my problems are nothing to do with my thyroid even though my tsh has

been anything from 13 to 6.

My doctor recently did a blood test which showed my vit d was 21 ref 30 - 100.

I'm now worried that the endo will say I don't need the thyroxine and just vit d

which will alleviate my tiredness. My b12 and folate are fine because I

supplement them.

I actually feel much better ( apart from being very tired) on the low dose of

levothyroxine but I know from reading here that it is far too low a dose. Endo

only wants to get my tsh below 4 and again, I know this is not low enough. Why

is it all so difficult all the time!

Anyway end of ramble, I'm sure it'll all be OK. It's just knowing what the

majority of endos are like I'm expecting the worst!

[Guest guest]

Don't be nervous. Look forward to it, knowing that you have a

lot more knowledge since joining this forum - probably even more than him when

it comes to hypothyroidism. Look in our FILES section http://health./grouop/thyroidapatientadvocacy/files/

and open the folder 'Information for Patients' and in there you will find a

document entitled 'First Visit to Endocrinologist'. There you will find some

hints and tips that should help you.

If your TSH has come right down and he tells you that you

therefore don't have a thyroid problem, tell him that this is what thyroid

hormone is supposed to do, therefore, it has worked, but because you still have

symptoms, you need an increase. If he doesn't know what to do, you have to show

him that you do. Many people with hypothyroidism have very low levels of

vitamin D and need high doses to build this up again. If vitamin D is low, no

amount of thyroid hormone (not even your own) can be properly utilised at the

cellular level.

You should be aiming to get your TSH down to 1. Doesn't this

endoprat know anything??? In the US, the ref. range for TSH is 0.3 to 3.0 - in

other European countries their TSH reference range is 0.3 to 2.5 (with a

recommendation in Belgium that this be dropped still further to 0.3 to 1.5).

How would he diagnose and treat if he lived over there I wonder???

Actually, the best recommendation that I can give you is to get

this appointment over and done with and discharge yourself from his care (lack

of care). Tell your GP what you have done and why, and next time, get a

referral to one of the doctors I have sent you.

Go in there and enjoy your moment knowing that you don't have to

listen to what he says or do what he advises, because honestly, he knows little

to nothing. These endoprats are scary with their lack of thyroid knowledge (

Luv - Sheila

I've not got a question, just wanted to post as

I'm getting very nervous. I have an appointment with my endocrinologist

tomorrow to review how the 25 mg levothyroxine he has prescribed ( low dose due

to heartattack last year) has affected my tsh. I'm hoping he now agrees to keep

me on it and up the dose. He reckons my problems are nothing to do with my

thyroid even though my tsh has been anything from 13 to 6.

My doctor recently did a blood test which showed my vit d was 21 ref 30 - 100.

I'm now worried that the endo will say I don't need the thyroxine and just vit

d which will alleviate my tiredness. My b12 and folate are fine because I

supplement them.

I actually feel much better ( apart from being very tired) on the low dose of

levothyroxine but I know from reading here that it is far too low a dose. Endo

only wants to get my tsh below 4 and again, I know this is not low enough. Why

is it all so difficult all the time!

Anyway end of ramble, I'm sure it'll all be OK. It's just knowing what the

majority of endos are like I'm expecting the worst!

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[Guest guest]

> Actually, the best recommendation that I can give you is to get this

> appointment over and done with and discharge yourself from his care (lack of

> care). Tell your GP what you have done and why, and next time, get a

> referral to one of the doctors I have sent you.

>

> Luv - Sheila

>

Oh Sheila thank you. You always know what to do and say. I wish I had you with

me when I go. I'll make a few bullet point notes for myself beforehand. You

never know everything might be ok. Oh yes! I must not cry ( even though I feel

like it) he'll definitely say I'm depressed!!

I havn't received the list of recommended endos and I would be grateful for it.

I live in the south Manchester/Warrington area but would be happy to travel.

Big hugs and many thanks

Jane

[Guest guest]

Well my angst was unfounded.

My endo has upper my dose to 50 mg levothyroxine and is writing to my doctor

with instructions to increase it every 8 weeks until it is well below 2. I'm

happy with that at present. I don't want to push it because of my recent heart

attack. As I was folate anaemic and did have low b12 and vit d is still very

low he is asking my GP to do a celiac test and to give me a dexa scan and check

my calcium. He also said my ferritin is high so my GP needs to keep an eye on

that. When I see my GP in a week for my tablet review I'm going to ask for a

test for Haemochromatosis because of my high ferritin level. My gran died from

liver cirrhosis and she was a none drinker and Haemochromatosis can cause this

plus heart problems and raised liver enzymes. This is like trying to solve a

giant jigsaw puzzle, and hopefully it'll all slot together soon.

Below are my results and I'd appreciate your views.

Free t4 17.6 pmol/L 12-22

Tsh 4.230 uiu/ml 0.270-4.200

Folate 15.0 ng/ml 4.6-18.7

B12 921 pg/ml 191/946

Ferritin 233.8 ug/L 5-148

Total protein 73 g/l 62-82

Albumin 43 g/l 35-50

Globulin 30 g/l 20-40

Total bilirubin 9 umol/l 3-22

Alkaline phosphates ALP 85 Iu/L 30-130

ALT 53 Iu/L 10-66

GGT 97 Iu/L 0-80

Cholesterol 5.2 mmol/L 0.0-5.5

Triglycerides 1.04 mmol/L <2.0

HDL cholesterol 1.3 mmol/ >1.0

low density lipoprotein 3.4 mmol/L 2.0-4.0

Cholesterol/HDL ratio 4.0

Thyroid peroxidase antibodies Negative

Many thanks

Jane