1st meeting with an endo - how to approach - Thyroid UK

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1st meeting with an endo - how to approach

Jellyfish_1 profile image
7 Replies

Dear comunity,

I have been hypothyroid for 6 years. Am taking 125ml levo and just feel exhausted all the time.

I gave birth 6 months ago. Whilst pregnant my dose was upped from 100 to 125ml. Whilst pregnant, although suffering from severe sickNess and vomiting, although very tired I did not suffer with severe brain fog and fatigue. I dI'd however have swollen fingers and achy fingers. No other body swelling.

6 months post birth, I feel totally exhausted. Still have achey fingers and now knees. Also have dry skin, sensitive stomach thinning hair, weight gain around hips and stomach, despite daily vigorous exercise and diet control (note, I was very slim during pregnancy due to vomiting 40 times daily) had a post nasal drip for 2 years which is now worse.

I told my GP who said I was tired from being a new mum. Yes, that plays a part, but we all know thyroid tired and normal tired. I informed the Dr that I have a lot of support. my husband takes many nights with baby and my sister lives with me and is hands on. He took no notice and dismissed me saying as my TSH level was 1.9, there was nothing further he could do. I informed him that I function best at 1 and under (my previous GP practice believed in tighter management I.e for those on levo they liked patients to have TSH of 1 and under. I was still dismissed.

I wrote into the surgery with my concerns and was finally referred to an endo whom I am meeting on 18 Oct.

in the meantime, the gp agreed to a blood test. Just prior to that out of sheer desperation, I upped my own dose to 150mg. that helped me get out of bed. But 5 days before my blood test I went back down to 125. my test came back slightly over compensated. I forgot to get the figure. the Dr advised on going down to 100mg which I refused and told him I'd taken a higher dose. He agreed to a test in one month.

So I'm seeing the endo. Any tips on how to get the most out of this appointment.

Any help gratefully accepted!

phew, writing this was a struggle.

Jellyfish

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7 Replies
shaws profile image
shawsAdministrator

I'm sorry you are still feeling rough and symptomatic.

Your TSH is nearly 2 and 1 or lower is recommended. Doctors believe anywhere in the range is fine.

I hope the Endo is good and flexible to help you recover your health. He will probably increase your dose but I'd ask if you could trial some T3 (they have been given restrictions I believe on T3 as it is too expensive) with your T4 as you might feel a huge benefit.

Jellyfish_1 profile image
Jellyfish_1 in reply to shaws

Thanks for the advice. I will be sure to ask for that trial!

Kind regards

Jellyfish

shaws profile image
shawsAdministrator

I should have welcomed you to our forum and we have very helpful members.

There is some procedures about getting the best results when having blood tested and you may already know them but I'll state them anyway.

The blood tests should be the very earliest possible and fasting. You can drink water. Also allow about 24 hours between last dose of levo and the test and take it afterwards.

Levothyroxine should be taken on an empty stomach, i.e. when you get up and wait about an hour before eating. Food interferes with the uptake of hormones.

Or, bedtime dosing as long as you've last eaten about 2.5 hours previously. (If this dosing procedure is chosen, when having a blood test you miss this dose and take after test and it can also be taken at p.m. as usual).

Also ask for B12, Vit D, iron, ferritin and folate to be tested as we are usually deficient.

Jellyfish_1 profile image
Jellyfish_1 in reply to shaws

Hello,

Thanks for advise. I knew all of that except that the blood test is a fasting one and not to take a dose beforehand.

I am vit d deficient and periodically suffer from iron deficiency. I take supplements for both.

Thanks for your time!

Kin regards

Jellyfish

loueldhen profile image
loueldhen

T4 doesn't agree with everyone. It might be your problem.

Jellyfish_1 profile image
Jellyfish_1 in reply to loueldhen

Really. Is that from your experience?

loueldhen profile image
loueldhen in reply to Jellyfish_1

Yes. Took t4 for 7 years - never felt any benefit - got sicker and sicker until I stopped. That's why some people are t3 only.

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