New hypothyroid diagnosis

[ReallyTruly]

I was wondering if someone could have a look at my recent results etc and just give me a bit of reassurance/advice.

Back in 2012 after feeling horribly ill and several visit to my GP (who told me I was just anxious 🙄), I was found to be very hyperthyroid. I can’t now remember the various results. I was referred to an endocrinologist. Took carbimazole for several months but became hypothyroid. The carbimazole was gradually stopped and the GP said everything was now fine. They stopped doing blood tests after a while and I carried on as normal ... admittedly felt great for a few years.

Fast forward ... for the past year I’ve been feeling terrible. Stupidly ignored it, putting it down to being “run down” and probably peri-menopausal (I’m 47)

Some days I feel like I can barely get the energy or motivation to do anything. Everything hurts.

So I decided to do the Thyroid Ultra Vit from Medichecks before going to the GP for him to tell me there’s nothing wrong.

My results:

CRP HS 8.33 (<5)

TSH 19.7 (0.27-4.2)

Free T3 4.07 (3.1-6.8)

Free Thyroxine 11.2 (12-22)

Thyroglobulin antibodies 479 (<115)

Thyroid peroxidase antibodies 61.9 (<34)

Folate 6.16 (>3.89)

B12 active 38.7 (37.5-188)

Vit D 105 (50-175)

My GP has prescribed 100mcg of levothyroxine. I asked if there was any special instructions for taking it. He said “no, just once a day”. I also take Microgynon (combined pill - taken to keep terrible periods under control). I asked if there was a problem with me continuing it. He said no.

I now see from reading posts here, that I do need to take the Levothyroxine on an empty stomach, no food for an hour etc etc, no vitamin supplements or prescriptions within four hours?

I started the levothyroxine yesterday, and I guess feel a bit lost about whether I’m doing it right!

[jimh111]

I take my levothyroxine immediately before breakfast. I think the important thing is to be consistent and don't take it near large meals. Bran and coffee reduce levothyroxine absorption as do supplements such as iron and calcium. You may find it simpler to take your levothyroxine before bedtime. If you do have absorption problems this will show up in your blood tests, most patients seem to absorb levothyroxine reasonably well.

[greygoose]

So, you were never truly hyper, you had Hashi's. Your antibodies say so. And, the Hashi's followed its normal course, and now you are hypo. That's the way it goes, I'm afraid.

Your doctor might have started you on too high a dose. Normal starter dose is 50 mcg. Some people can tolerate 100 mcg, but it might be better if you halved it for a week, and then went up to 3/4 for a week, and then up to 100 - or go even slower, if you like. When did he tell you to go back for a retest?

You should take the levo on an empty stomach and leave an hour before eating or drinking anything other than water. Leve a gap of two hours before taking most supplements/medication, but four hours for magnesium, iron, calcium, vit D and oestrogen.

Your B12 is very low. You ought to ask your doctor to test for Pernicious Anemia. Get the test before starting any kind of B supplement. Did you not get your ferritin tested?

Your terrible periods are probably due to your being hypo.

[Marz]

Was there a Ferritin result ? - ( stored iron ) - if low then a FULL Iron profile is needed. Low iron can also be a cause of heavy periods ...

[ReallyTruly]

Thanks everyone for taking the time to reply!

Sorry, yes I did get Ferritin checked by Medichecks. It was 66.5 (13-150)

Greygoose - thanks so much for all your comments. My GP asked how much I weigh and said he worked the dosage out with that. I weigh 60.3kg.

He said to go back in 6-8 weeks to get a blood test (I have a feeling he won’t do a full thyroid scan though 🙄)

When I was having period problems, I went to see him a few times and even asked if it could be my thyroid playing up again ... but he said probably not.

[Marz in reply to ReallyTruly]

Due to a behind the scenes discussion on LOW iron being the cause of heavy periods - I regret to say I cannot find the information source. I have seen it mentioned here - hence it was somehow printed in my memory

There is certainly enough references regarding thyroid and period problems - check out Iron Disorders on the internet. A useful website ...

[greygoose in reply to ReallyTruly]

Well, your doctor doesn't know much about thyroid, I'm afraid. That is not how you calculate the dose of someone who has just been diagnosed, but has probably been hypo for a long time before the symptoms began to show. That is how you work out the starter dose for someone who has just had their thyroid removed, and it is adjusted from that after six weeks - maybe down, but probably up. Your weight has little to do with how much hormone you will eventually need.

If you start by halving the dose, and then work up from there, I would leave the retest till later, if I were you. Do it six weeks from the time you start 100 mcg. It takes six weeks for the levo to be fully synthesised in your body.

When you go back for your retest, make sure it is early morning - before 9 am - and fast over-night. Leave a gap of 24 hours between your last dose of levo and the blood draw. So, if you do change the time you take it, as jim suggested, on the day before the blood draw, exceptionally, take it in the morning, to get the full 24 hour gap.

[ReallyTruly]

Thank you so much Greygoose! It’s so frustrating ... and one of the reasons I’m generally reluctant to go to the GP. He’s the better one of the bunch!

Stupid question alert: The tablets he has given me are 100mcg ones, should I literally just cut them in half? Or go back and ask for a smaller dose?

I’m wondering if I should ask to be referred to an endo? No guarantee, I guess, that I would see a good endocrinologist. But it might be worth a try.

[Hidden in reply to ReallyTruly]

In my experience, you can just cut the pill in half with a pill-cutter. Some pills are scored which makes it easier, but that should work for any pill.

[Treepie in reply to ReallyTruly]

Most endos are diabetic experts and not good on thyroid.

[Hidden in reply to Treepie]

I could not agree more!!! The first endo I was sent to after initial diagnosis messed me up pretty badly because of his advice: only to measure and dose by the TSH, as "all other labs" would be normal once the TSH normalised...he was a diabetes specialist and clueless about thyroid (I did not realise it at the time, only later), and did not even know that there were other treatment options than levothyroxine...I now steer clear of endos.

[humanbean in reply to ReallyTruly]

I wouldn't bother with an endo - they rarely make people with hypothyroidism better in any way. And it is unlikely your doctor will agree to a referral anyway. Hypothyroidism is considered to be well within the capabilities of a GP to deal with and no consultant involvement is considered necessary under normal circumstances.

One of the problems with hypothyroidism is that the replacement thyroid hormone treatment has to be introduced slowly. It affects the whole body and has knock-on effects on all sorts of things. Introducing it too quickly just simply doesn't work for most people - the body needs time to adjust. So, starting at 50mcg per day, waiting 6 weeks then increasing to 75mcg, then waiting 6 weeks and increasing to 100mcg is probably best.

You can get tested just before you do each increase to see how your blood tests are going. Your doctor will expect you to get tested after 6 weeks or so, because your prescription is new to you. And you might not get more pills prescribed until that testing has been done. It would be a good idea to ask for a re-testing appointment now, for 6 weeks time, because appointments are so difficult to get. Don't leave it to chance, it will just muck up your dosing and treatment and delay you feeling better.

[Marz in reply to ReallyTruly]

Have alerted greygoose to your reply - she will not have received an alert 😊

[ReallyTruly in reply to Marz]

Thank you 🙂 just getting the hang of the site

[Marz in reply to ReallyTruly]

It does take time ...

[greygoose in reply to ReallyTruly]

Yes, just cut the pills. It doesn't matter if the pieces are equal, you are going to take all the pieces eventually, so it will even out. Levo (T4) is a storage hormone, so you can do that.

I agree with the others, best not to see an endo. Because once you've done that, and he's given his stupid 'advice', your GP won't go against it, so will be unmanipulable. Which is not a good thing at all.