Prescribed levothyroxine at last!

[Sleepysparrow]

After a long struggle, you know how it goes... I have finally been offered a trial of levothyroxine by a GP.

My Medichecks results in 2020 were ignored by my GP (serum TSH 6 range 0.7-4.2) plus presence of large amount of antibodies.

NHS ones kept coming back 'normal'.

A different GP agreed to test again and to test for antibodies.

Now my NHS results have come back

serum TSH 5.82 (range 0.25 - 4.20) called 'HIGH' - plus presence of antibodies.

I was asked to make a non-urgent phone call, which took 6 weeks to arrange! The GP said there's not a problem but if I have symptoms I can have a trial of levo. I said I've had symptoms for the last 10 years. They don't acknowledge impact of antibodies or mention auto immune problems.

Anyway, he's starting me on 25mg, even though I weigh 75kg. He said 'go slow, start low'. I didn't have the brain power to argue. He said I could end up with heart arrhythmia. I'm thinking that's a low starting dose? At least it's a start. To be honest, I'm a bit nervous about starting it. The 'battle' has been going on for so long, and I saw the effects it had on my Mum for many years, struggling with doses and not being heard, that I feel quite wobbly about it all. From reading all the info on this site, it sounds as if it's the start of a long battle and I may feel worse. At the moment, I feel I'm in control of my health but when I start this journey, I'll be at the mercy of ill-informed GPs.

I'm not expecting much change on 25mg, he's only given me one month and I'm to have another blood test in 6 weeks.

I suppose if I start now, it may lessen the impact in the future as my thyroid gives up the ghost? Perhaps I should be grateful that I'm starting when they don't think I really need it?

Oh well, watch this space, as they say!

I must stay that since working on optimizing my vitamins as per the info on this site, especially the ferritin and B12, I have started to feel better than I have done for a long time.

Thanks everyone. It's good to know you're there.🥰

[RedApple Administrator]

'he's only given me one month and I'm to have another blood test in 6 weeks.'

Hopefully you will get another month supply before the blood test!

[Sleepysparrow in reply to RedApple]

Fingers Crossed!

[Beads in reply to Sleepysparrow]

And if it took 6 weeks to get the non-urgent appointment, have you booked the blood draw and next appointment already?

[Sleepysparrow in reply to Beads]

Good point!

[SlowDragon Administrator]

well done

Very helpful profile too

Are you taking a daily vitamin B complex as well as B12 injections

Yes 25mcg is low dose but you sound like you have been hypothyroid a very long time

so low and slow may be necessary

Which brand 25mcg have you got

Or have you not picked up prescription yet

3 options for 25mcg

Mercury Pharma - also available as 50mcg and 100mcg

Generally well tolerated

Wockhardt - generally very well tolerated, but only available as 25mcg tablets. Some people remain on wockhardt taking several tablets per day when on full replacement dose

Teva - lactose free, so necessary for some people. It’s a Marmite brand, some people can’t tolerate it. Unless you are lactose intolerant, best to avoid as initial starting brand

You are unlikely to notice any changes for at least 7-10 days, then may start to notice small improvements. By 6 weeks some hypothyroid symptoms may start to return…..just means you are ready for next increase in dose up to 50mcg

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[Sleepysparrow in reply to SlowDragon]

Thanks. Yes, following advice on here, I’m taking Thorne Basic B or BetterYou oral B12 and oral Vit D with K.

The brand I’ve been given is Wockhardt.

I just found the notes I took during my phone consultation with GP….

He said my T4 was “normal at 16, which is very good as since 2012 it was 10, then later 10.5, then 11,etc, so 16 now is great.”

He also said “TSH is the driving hormone and the one they look at, we’re not concerned with pushing up your T4.”

“TSH is the one that matters and yours is now slightly above the range. National Guidelines say to wait until it hits 10 before we treat you with thyroxin but if you feel you’d like to because you have the symptoms, we can give you a trial. If you suddenly feel great well that’s good. It may solve everything.”

As I said, he offered to start me on 25mg. He then said “most people end up on 50mg and stay on that. There’s no benefit from using people’s weight to determine their dose. There’s a danger of AF if too high.”

He did also add that all this can be quite confusing- even for a Dr.

The call didn’t inspire me with confidence!

However, I kind of expected it after reading the stories and experiences on this very helpful forum.

Thanks again for your input. Much appreciated.☺️

[SlowDragon Administrator in reply to Sleepysparrow]

TSH is the one that matters and yours is now slightly above the range. National Guidelines say to wait until it hits 10 before we treat

Starting levothyroxine - flow chart from NHS

TSH over 5, high antibodies and symptoms guidelines are clear, start trial on levothyroxine

gps.northcentrallondonccg.n...

He then said “most people end up on 50mg and stay on that.

Good grief……might need to find a different GP when you need to increase up over 50mcg!

[Sleepysparrow in reply to SlowDragon]

Thanks. I’ll print off that flow chart, might come in useful! 😂 As for finding a different GP, I’ve never spoken to the same one twice! Different each time, but I’ll try and make sure I don’t get that one when I need an increase!

[Lottyplum in reply to SlowDragon]

My first thought regarding the GP after reading Sleepy sparrow's post was, "what an ass!" He joins the long list of GPs who make me so angry when people are and have been so ill and their thyroid issues ignored/dismissed for years! And so it continues!

[Lulu2607 in reply to Lottyplum]

He sounds better than my GP who said sniggeringly that the NHS don't trial patients on levo. I was borderline low T4, borderline high TSH and very high antibodies. He said my problems were probably all in my head and admitted he didn't know what was wrong with me. That was 10 years ago. It limped on in a similar way until during lockdown when medical services stalledI I became very ill. And I mean VERY ill. Tsh when tested was so high they thought it was erroneous but no, it really was 160. I can't help but think other illnesses I developed in the intervening years might have been avoided if the GP had taken me more seriously at the time. The GP in sleepy sparrows case sounds more clued up than mine at least.

[Sleepysparrow in reply to Lulu2607]

Oh blimey, that’s awful. I feel lucky that I’m being heard at last and now treated, hopefully early - but it’s only through this forum that I’ve been able to ask for the correct tests and know what the numbers mean. 🙏 Thanks everyone 🙏 If only all GPs would watch the Paul Jenkins YouTube video recommended to me in an earlier reply 😵‍💫

[Lottyplum in reply to Lulu2607]

Shameful behaviour! So much for the Hypocratic Oath and ‘Do no harm’!

[greygoose]

At the moment, I feel I'm in control of my health but when I start this journey, I'll be at the mercy of ill-informed GPs.

Then you'll have to be better informed than they are, and stand up for yourself! Don't allow yourself to be at their mercy because they haven't got any.

[Sleepysparrow in reply to greygoose]

Thanks to the information shared on this forum, I understand a lot more now. It remains to be seen whether I can get it over the net with the GP! 😵‍💫

[greygoose in reply to Sleepysparrow]

Yes, I know, they can be deliberately obtuse at times. They just don't want to know how ill we are.

[BethH77]

I wonder if your GP would be willing to do some additional research, if so, send him this recording off You Tube:Modern Management of Hypothyroidism' by Dr Paul Jenkins, Cosultant Endocrinologist

[Sleepysparrow in reply to BethH77]

Thanks. Trouble is, I don’t have a GP as such. I could see (or more likely have a phone call with) any one of 5 or 6 or any locum and have to begin all over again in the allotted 10 mins! Oh well, at least I’m able to access a Dr. And treatment has begun!

[Sleepysparrow in reply to BethH77]

I’ve just listened to the first half of this video. It’s very interesting and reassuring as I begin my trial of levo and am a bit anxious about it. The part from about 22 minutes in especially worth listening to…Dr Jenkins says ‘listen to the patient.’ Thanks again for this. 🥳

[BethH77 in reply to Sleepysparrow]

I can't take the credit as it was shared by someone else on here but I thought it was brilliant too and am sending it to my practice to say get all your Dr's watching this!

[tattybogle]

Since GP is so influenced by by TSH.... play them at their own game and use these :

healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range-

and this may help to : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish

[Sleepysparrow in reply to tattybogle]

Thanks very much. This is useful, as is the YouTube video by Dr Paul Jenkins, recommended by BethH77.

[serenfach]

Trouble is, if you take the 25mg, any thyroid hormones you could be producing at the moment will stop and you will feel worse. 50mg is the usual starting dose, and you go up from there.

I know this will be controversial, but I would be inclinded not to start the levo, wait until the next blood test and they would have to up it then. At 50mg you may feel the benefit, this is the normal starting dose for someone your age. 25mg is the dose for those with heart problems, or the very elderly who dont complain.

It is up to you of course, but I really hate GPs who are ignorant!

[Sleepysparrow in reply to serenfach]

Thanks. Interesting thought. I did wonder! I’m not feeling too bad at the mo, although you forget what feeling good or normal is! I’m still sleeping a lot and not able to do much without resting a lot! And have aches and pains and brain fog and anxiety…but I guess I’ve got used to managing that so it feels normal!! I’m still thinking- should I/shouldn’t I? 😵‍💫