New to hypothyroidism! Help!: Hi, this is all new... - Thyroid UK

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New to hypothyroidism! Help!

Mummyluvsya profile image
15 Replies

Hi, this is all new to me. I was diagnosed with hypothyroidism 5 mths ago and handed levothyroxine! Then left to my own devices!

It was the pharmacy that said I was untitled to free prescriptions and who also told me I would be in meds for life!! He also told me I would need regular bloods tests!! I know it's beyond belief that the doc told me nothing!!

So I took myself off for bloods a month later and the. Asked when I needed them next etc! And up until now I have not yet seen head no til of the doc!!

I've no idea what any of the numbers or t4 t3 things are or where I would find out!!

But I feel like crap!! I'm in bed by 8:30 and that's because I make myself stay up! And I've gained loads of weight!!

Please please help!

Lisa x

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Mummyluvsya
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15 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Doctors often don't tell patients much, because they don't know much themselves

If you add the results that you have, members can advise.

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Essential to know if you have raised Thyroid antibodies

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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.

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. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Clutter profile image
Clutter

Welcome to the forum, Mummyluvsya.

Ask your GP receptionist for a printout of your thyroid results and ranges (ranges are figures in brackets after results) and post them in a new question and members will advise whether you are optimally dosed.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 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_...

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 and after every dose adjustment. Once dose and levels are stable you should have biannual then annual testing. 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_...

mummyluvsya2 profile image
mummyluvsya2 in reply to Clutter

Thank you!

ShinyB profile image
ShinyB

Hi and welcome :) Your doc sounds a regular numpty. You should have been having regular dose increases and bloods checked every six weeks or so. If you're in the UK you are entitled to see a print out of your results. Don't accept a 'They're normal'. You want to see the actual figures, and the ranges. Usually in the UK the docs only check your TSH level. This checks the level of a hormone produced by the pituitary to stimulate the thyroid. Docs seem to think that's all that's needed, and in many cases it perhaps is. But a lot of people need to have their free T4 and free T3 tested, and also any thyroid antibodies. You can get this done privately through, for instance, medichecks.com.

How much levothyroxine are you taking?

Mummyluvsya profile image
Mummyluvsya in reply to ShinyB

Hi thank you! That answer is much clearer than anything I have read!! I'm in 25mg which I assume is the lowest!

I am in the uk. I asked the receptionist and she said I was 13 but now I am 11? But she didn't explain what that meant at all!

ShinyB profile image
ShinyB in reply to Mummyluvsya

25mcg is a very low starter dose. Usually a starter dose is 50 mcg unless you're v old, v ill, or a young child.

I'm guessing your receptionist would have been referring to your TSH. That figure sounds high - I think typically a figure of 1 is better.

Ask for an actual print out of the results (you are legally entitled to this. Some surgeries might ask for an admin fee for doing so. A way round this is to ask for a print out in an actual appointment with your GP. Or take a photo of the results onscreen on your phone in an actual appointment with your doctor) and put the results on a new post for feedback.

I'm new(ish) to all this too. It's flippin complex and confusing, especially with a big dose of brain fog lol.

The info you've been given in your other replies is worth trying to get your head around, as they both know what they are talking about. I'm still on a big learning curve! It's definitely worth asking for your Vit B12, Vit D, Ferritin and Folate levels to be checked. Hypothyroidism totally messes up absorption of these and at the same time they are vital for thyroid hormones to work properly, particularly ferritin, I think.

Are you making sure you take your levothyroxine away from food and away from any vitamin supplements? It's absorbed best on an empty stomach.

Keep reading and asking questions. I've found it painfully slowgoing trying to get my head around all this new information, but it seems that as a hypothyroid patient, it's essential!

x

Pascha1 profile image
Pascha1

Hi and welcome,

You are lucky to have found this forum I was left nearly 13 years ( the 1st 10 years i was left on a low dose no bloods checked, I upped my dose several times before any GP took bloods again )

I was quite unwell till i found this forum and learnt that all my problems were my thyroid causing most of my symptoms and it is quite unbelievable how little GPs know on thyroid im appalled at it all tbh you will read often how negligent some are on here,,

You will get excellent advice on here and learn more about your Thyroid than most GPs and some Endocrinologists out there !

Your GP sounds like the ones I have had treating me in the last 13 years they really do not have a cluei I have this forum to thank for helping me educate myself on hypothyroidism I am finally getting myself back, its been a long road and if I hadn't found this forum I would still be very ill...

SlowDragon profile image
SlowDragonAdministrator

Nice guidelines saying that standard starter dose is 50mcg and how to increase

cks.nice.org.uk/hypothyroid...

So unless elderly, frail or a heart condition we should be started on 50mcg

Bloods retested in 6-8 weeks after starting.

Dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Get hold of your blood test results you are legally entitled to them

You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. You may need enhanced access to view blood test results. All GP practices are supposed to offer online access including test results, in reality very few yet have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

You need to know results for TSH, FT4 and FT3.

Do you also have high thyroid antibodies? You need to know. Did GP or Endo ever test these? If not ask that they are tested.

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

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.

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. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

Mummyluvsya profile image
Mummyluvsya

Thank you so much! I will try to get an appt with a doc this week as I feel dreadful! I feel like and 80 yr old in a 44 yr olds body!! Tired all the time and don't even accept offers to go out in the eves because I know I won't manage it.

I'm also on 20 mg of vital orphan and have been taking it at the same time as the levothyroxine. Perhaps I shouldn't?

And I had NO idea that I should take a 24 hr break from meds before my blood test!! What an eye opener!!

Thank you!

Mummyluvsya profile image
Mummyluvsya

Citalopram!!! Not vital organ!! Lol! Gotta love predictive text!

ShinyB profile image
ShinyB

haha, I was sat here puzzling out what Vital Orphan was - and desperate enough myself to consider adding it to my supplement regime! ;-)

It's best to take thyroid meds away from anything else, both food and supplements. I take mine last thing, four hours after food, and with the night ahead of me for them to hopefully be absorbed properly.

The notifications on healthunlocked are a bit strange. Noone would have received a notification to your last two posts. A notification is only sent in response to a reply on a specific post. I only happened to spot it as I'd come back to look at my earlier reply to you to check something I'd written.

Mummyluvsya profile image
Mummyluvsya in reply to ShinyB

Oh? Am I replying in the wrong box??

Thyroid fog!!!

Anyway I followed advice and stormed into the docs today! Demanded all the tests that you guys had recommended and got them all I think apart from t3? He has also tested I think for rheumatoid issues from what I can decipher! I guess it's because I told him how much a I ache and hurt all over my body!

He said I didn't need to fast if not take my meds but I didn't listen to him and purposely didn't take them for 24 ish hours!

I will await the results!!

Oh and he wasn't interested i. The slightest about telling me anything about the condition at all!!!

ShinyB profile image
ShinyB in reply to Mummyluvsya

ugh I know the feeling re brain fog! Just thought I'd point out about the notifications, in case you thought noone was bothering to reply. I felt a right billy no mates the first time that happened to me LOL.

That's good that your doc is testing for various things. Shame it's not the T3 too but I think very few docs will test for that. It might be worth considering taking a private test to find out about your free T3 level. You can high a nice healthy FT4 level, but it's possible your body doesn't convert the FT4 very well to FT3. And it's the FT3 which is the really active hormone that actually DOES things. FT4 is more like a storage hormone, waiting to be converted to T3 as needed.

When you get your results, make sure you get a print off, and post them on here so that you can get some pointers on what's going on. You're legally entitled to a copy of your results, so don't be fobbed off by a verbal, "they're fine."

Good luck :D

Mummyluvsya profile image
Mummyluvsya

I apologise! I type faster than I think!!

Stourie profile image
Stourie in reply to Mummyluvsya

Hi when replying ALWAYS use the reply button xx

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