Post Endo visit advice please: Hi all. Had my... - Thyroid UK

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Post Endo visit advice please

AngieAsh profile image
6 Replies

Hi all. Had my first Endo visit this morning. He seemed nice, felt my neck, did reflex tests, asked a lot of questions. Did say that being veggie my GP does need to give me B12 injections with a result of 196 (197-900). He has put me on Levo (Teva) 50mg to see if they help and wants to see me in 12 weeks (receptionist says more like 14). BUT despite high TPOab he has put me down as subclinical hypo and not auto immune and says they need to do more investigation to find why I am subclinical.

My questions are what kind of tests are these he wants me to get for next time and do I still need to pay for prescriptions if it is subclinical? Also both the Endo and the Chemist were very specific about me taking the levo first thing but I rarely get up at the same time and often wake with a headache/migraine needing tablets, is it really that important to take them a.m.? Thanks in advance.

Oh and he says try having a brighter outlook, it might help to be more positive 😏

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AngieAsh
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SlowDragon profile image
SlowDragonAdministrator

You can take Levo at bedtime, in fact recent research suggests it may be more effective

Whatever time you take it, it needs to be on empty stomach and then nothing apart from water for at least an hour after. If take in evening must be at least two hours after food, longer if it was large meal. No other medications at same time

verywell.com/should-i-take-...

Get a weekly pill dispenser so you always remember to take it.

Some brands of Levo don't suit everyone. Teva has been one of the ones that people sometimes find does not agree with them. There are other brands to try if so.

Your vitamin B12 was very low. Has your folate been checked too

As you have high TPO antibodies you do have full blown Hashimoto's, you're not sub-clinical.

Read as much as possible about Hashimoto's. Lots of us find changing to gluten free diet reduces symptoms.

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

The thyroid pharmacist website has masses of info about Hashimoto's and her video series the Thyroid Secret is on YouTube

AngieAsh profile image
AngieAsh in reply to SlowDragon

Thanks slowdragon.

I hadn't actually thought about drink with night time Levo, I do like a glass of wine or a rum and coke so maybe I better go for mornings. I just don't want to wake with migraine and have to live with it for an hour.

I am going to try just levo without going gluten free at first to see how I get on and I will try gluten free if my symptoms don't improve enough.

I thought I remembered seeing that Teva name around, fingers crossed I am ok on it, I won't know if it is any less beneficial fir me than any other brand since it's my first Levo but I shall watch out for reactions.

Folate was checked but I wasn't given the results when I asked, that is another battle I have, I'll ask the doc on Friday when ai go for the B12.

Any idea on the prescription charges with him writing subclinical on my record and not auto-immune? I may have an Endo who 'doesn't do antibody results' hooe not, I hadn't realised he had only put subclinical without the auto part until I left. I'll put a nite in my diary to push on that next visit.

SlowDragon profile image
SlowDragonAdministrator in reply to AngieAsh

I think Anyone on thyroxine gets free prescriptions. Possibly you need a form from GP?

helvella profile image
helvellaAdministratorThyroid UK in reply to SlowDragon

This applies only in England (Wales, Scotland and NI already get 'free' prescriptions).

Further, it has nothing whatsoever to do with the medicine(s) that have been prescribed just that you have myxoedema (that is, hypothyroidism which needs thyroid hormone replacement) or one of the other qualifying conditions.

If you need to get a prescription dispensed but do not yet have a Medex card:

Refunds of prescription charges

If you need to pay prescription charges before your medical exemption certificate arrives, you can get a refund as long as:

you ask for an FP57 refund receipt when you pay (you can’t get one later)

the start date of your medical exemption certificate is the same or earlier than the date you pay for your prescription (certificates are backdated one month from the date that we receive your application - they can’t be backdated any further)

You must claim your refund within three months of paying.

The FP57 refund receipt tells you what to do.

nhsbsa.nhs.uk/exemption-cer...

Clutter profile image
Clutter

AngieAsh,

If you have to take medication for migraine first thing in the morning take your Levothyroxine 2 hours later. Subclinical hypothyroidism simply means that TSH is high with FT4 and FT3 in normal range. Your pharmacist or GP receptionist should give you a medical exemption form to complete so you don't need to pay for prescriptions. You will have to pay until the med exemption card arrives but the pharmacist can give you a form and receipts so you can reclaim costs for prescriptions you have to pay.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

If Thyroid peroxidase antibodies are high it confirms autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

Your B12 is very low probably due to your vegetarian diet. Your GP should give you a B12 injection to restore levels but after that you should supplement 1,000mcg methylcobalamin to compensate for the lack of B12 in your diet.

AngieAsh profile image
AngieAsh

Thank you helvella and Clutter

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