Success Yesterday! I’ve been prescribed T3! But should I reduce my Levothyroxine?

[Alternatively]

Hello everyone, currently feeling relieved and hopeful, I had my consultation with the Roseway Labs pharmacist and she agreed my FT3 level was too low (4.2 - range 3.1 - 6.8). She has prescribed Sigma Pharma 2.5mcg daily for the first 2 weeks and then 5mcg per day. Looking forward now to them arriving in the post!

But I have a question…….I wanted to ask please, do you think that taking the Liothyronine will make my FT4 level increase even more? (I’m worried because I’ve read that having a high T4 level is dangerous? For the Heart, etc )

And do you think I should immediately reduce my Levothyroxine dose to 75mcg every other day and 50mcg in between, when I begin taking T3, or before I begin ? Or not reduce it at all?

I would really appreciate all and any advice 🙏

My FT4 level is 20.50 (range 12-22), My TSH level is O.311 (range 0.27-4.20), and I’m currently taking 75mcg Levothyroxine daily.

Grateful thanks as always for your help.

[greygoose]

do you think that taking the Liothyronine will make my FT4 level increase even more?

No, taking T3 will reduce your FT4 level. So, I would leave your levo dose as it is, if I were you, until you see by how much your FT4 has reduced.

[Alternatively in reply to greygoose]

Thankyou for your reply greygoose, much appreciated.

[greygoose in reply to Alternatively]

You're welcome.

[DippyDame]

Don't be concerned...

Adding T3 causes both TSH and FT4 to fall naturally.

I wouldn't reduce Levo when you add T3....we only change one thing at a time otherwise we won't see what is doing what

Starting T3 at 2.5mcg sounds fine

Follow the instructions you have been given, you may have some symptoms as the body adjusts to having T3 but stick with it

Test again after 6 weeks on a constant dose of 75mcg T4 plus 2.5mcg T3

Those results will point to any required changes

Post them for advice

[Alternatively in reply to DippyDame]

Thankyou for your advice, that’s really good to know. So now my next task will be to try to convince my gp not to reduce my Levo prescription, even though the Endo, that she rates very highly, is writing to her to say that very thing!

Oh, I just want to stop having to plead with the medics, it’s exhausting and I feel very awkward doing this because they’ll be thinking (or saying), I’m the doctor, you’re the patient, how comes you think you know more than us ? I find it so embarrassing.

[DippyDame in reply to Alternatively]

It would make no sense to reduce levo at this stage, refuse any reduction at least until you've been on the initial combo dose for 6 weeks and been tested to include at least FT4 and TSH...they are "mean" about doing FT3 tests despite the fact that FT3 is the most important result ( proven by science!)

I agree the whole issue of thyroid diagnosing and treating is a complete mess....and medics are poorly trained with limited knowledge

It's your body, you know it better than anyone else and as time goes on you will learn more, and will probably come to know more than them...after very limited thyroid related lectures.

They are not superior beings and they are just as flawed as the rest of us, so not in a position to be patronising in an attempt to cover up their shortcomings!!

It's they who should be embarressed!! I told one arrogant GP that if they couldn't find out what was wrong with me I would do it myself......drew breath and thought did I really say that. I did, and I did!!

I gave up, took control and self medicate!

The best doctor I know once said to me...I don't know about that, tell me.

Anyway, I'm on my high horse again....be strong!

[Alternatively in reply to DippyDame]

Yes, I can see your point…… if I’m not taking any notice of my gp’s advice and I’m getting private blood tests done and accessing T3 privately, do I really need them? Maybe I could access T4 privately too?

Would Roseway would also supply Levothyroxine given the circumstances I wonder?

[Sparklingsunshine in reply to Alternatively]

I'm not sure about Roseway prescribing Levo, Levo is as cheap as chips and already prescribed widely ( but not widely enough maybe). Obviously the NHS go to medication

I think people who end up consulting Roseway have already tried and failed with Levo, often for years before throwing in the towel. They offer prescriptions for thyroid meds the NHS rarely offer, like NDT and T3. I could be wrong though so dont quote me lol.

And I fully understand your desire to go off grid, so to speak. Like many of us, when it comes to thyroid I hate being beholden to the NHS for my Levo, even though I'm on combi therapy.

Their blood tests are often pointless as they only test TSH, and then they'll try and reduce your Levo and you get into an inevitable battle of wills. Its stress we don't need tbh.

[Alternatively in reply to Sparklingsunshine]

Yes I agree, it’s just that it’s another task to do to try and source T4 privately.

[Sparklingsunshine in reply to Alternatively]

Yes it is and just adds to the burden of being hypo. You could always just "lose" a box of Levo, or "leave" it at a relative's house who lives too far away to drop it off. That way you can start getting a stash put aside for in case. You can get a replacement easily enough via GP. Its not right that we have to descend to subterfuge but it is what it is.

[Alternatively in reply to Sparklingsunshine]

That’s a brilliant idea!! Thanks Sparklingsunshine!

[Alternatively in reply to Alternatively]

I did it Sparklingsunshine!!

I called my surgery and said I’d left a box of my Levo at a hotel but they couldn’t find them, so please could I have some more? And they said no problem, they would get a prescription ready of both strengths that I take, ready for me to collect!

So now I’ll have some in reserve! So Thankyou for sharing your idea!

[Tina_Maria in reply to Sparklingsunshine]

Funny you should mention that, the levo prescription is for 3 months normally, but I usually put in a repeat prescription request after 9 or 10 weeks. You can argue that you cannot get to the surgery immediately and it takes time to get the supply. This way I have build up at least 3 months extra supply of levothyroxine.... just in case.😉

[Alternatively in reply to Tina_Maria]

At my surgery I have to request my prescription every month and it’s such a pain! I asked if I could lengthen this time and was told no because it saves on wasted meds 🙇‍♂️

[Tina_Maria in reply to Alternatively]

That's a bad excuse if I ever heard one! 🫣It does not waste meds, as you are unlikely to quickly change doses and it actually it wastes GP resources, as they have to continuously issue a new prescription! Not the brightest tools in the box, me thinks! 🤔

[Alternatively in reply to Tina_Maria]

Oh I know 🤷‍♀️

[DippyDame in reply to Alternatively]

I would be inclined to keep NHS as your source of Levo....you never know, after the next test things might begin to look clearer. It also provides a safety net.

Something I learned is that rushing/ jumping in at the deep end just causes more problems

I'm on high dose T3-only, but that is absolutely the last resort, GP has no involvement but knows what I'm doing....long story.

Hold back on any decisions until you've had blood tests to include....

TSH, FT4, FT3, vit D, vit B12, folate and ferritin

[Alternatively in reply to DippyDame]

I hope I will be able to hold onto my current dose of Levo via the NHS, however the Endo has written to my gp saying it needs to be lowered, so wondering how that’s now going to pan out when I put my next prescription request in 😩

[Bertwills in reply to Alternatively]

I recently used Roseways for both T4 & T3. I used to take T3 only for a few years but decided to try combination treatment & now prefer it.

I couldn’t be bothered with the inevitable NHS TSH arguments so I just test with Medichecks & tell GPs my doses but not my results.

They asked who prescribed but I’d previously used a private GP so stuck to that. All seemed acceptable.

[Alternatively in reply to Bertwills]

That’s really helpful to know, thanks Bertwills!

[SlowDragon Administrator]

How long have you been on 75mcg

Which brand is it

Approximately how much do you weigh in kilo

Looking at previous posts, keep working on improving ferritin too

[Alternatively in reply to SlowDragon]

I’ve been on 75mcg for fourteen weeks now but I’d only been on this amount for six weeks at my last blood test, previously on 50mcg for about 6 months

Brands are Mercury Pharma 25mcg and Accord 50mcg

Weight 58/60 kilo

What are your thoughts?

I am working really hard to improve my ferritin within a vegetarian diet, I’m following all the absorption dos and don’ts to the letter. I’m hoping for an improvement at my next blood test, otherwise I’ll be really disappointed and at a loss as to what else to do.

[SlowDragon Administrator in reply to Alternatively]

so yes looking at current dose and weight I wouldn’t reduce dose levothyroxine

Extremely difficult to maintain good iron/ferritin on vegetarian diet

Likely to need ongoing iron supplements

Retest full iron panel 3-4 times a year when supplementing

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

[Alternatively in reply to SlowDragon]

Good to know, thanks SlowDragon, although all my other iron levels tested by Medichecks seemed pretty good. I’ll test again in a few weeks.

[Bertwills in reply to Alternatively]

Just so you know I have had very over range ferritin for years and wanted to reduce it. I discovered a diet called the LIFE diet which includes lots of green leafy vegs. In a couple of months my ferritin has reduced from over 400 to 270. Still above range but falling fast despite me eating some forbidden red meat,

Your veggie diet might be reducing your ferritin levels without you realising it. More info in my previous posts.

[Alternatively in reply to Bertwills]

Yes, it’s very complicated Isn’t it, because some plant foods contain iron but at the same time inhibit iron absorption, such as spinach. Thanks for highlighting that, I will have a look at your previous posts!

[GlowCoach Administrator]

She has prescribed Sigma Pharma 2.5mcg daily for the first 2 weeks and then 5mcg per day.

Just saying, but this is an expensive way to buy T3.

As you're starting out on 2.5mcgs it will make it easier to cut tablets to the correct dose, but once you get to 5mcgs then I'd recommend asking for Thybon Henning 20mcg that you can quarter. Much, much cheaper at 60p per 20mcg tablet.

[Alternatively in reply to GlowCoach]

Thankyou for letting me know that Jaydee1507, when I go back to Roseway for another prescription I’ll look at those 20mcg tablets to cut. Do I have to be cautious about changing Liothyronine brands in the same way as you would with Levothyroxine ?

[SlowDragon Administrator in reply to Alternatively]

Thybon Henning 20mcg tablets suit most people

Lactose and mannitol free

Substantially cheaper than Sigma Pharma

I assumed that they would change you to Thybon at next prescription

Sigma Pharma is I think lactose free but contains mannitol

[Alternatively]

Oh, fingers crossed I’m not sensitive to Mannitol.

[pennyannie in reply to Alternatively]

Well if you find you are sensitive to the Mannitol - - just give Roseway a ring and I'm sure they will offer an alternative.

Can you delay going back to your doctor so there's no discussion on a dose reduction of T4 until much later in the year when we will have an idea what's the best way forward for you -

Short term if you find your dose of T4 reduced without your knowledge - either complain to get it re-instated or give Roseway another call, explain what has happened and ask for a prescription of whatever T4 suits you best - and likely the least stressful option.

[Alternatively in reply to pennyannie]

I think I’m expecting my dose to be changed without any consultation, just when I request my next monthly prescription it will be different, but I don’t know, just assuming. I will let you know what happens. Or I might get the dreaded call from the receptionist saying the doctor needs to speak with you 😳

I suppose I don’t like confrontation…… I’m more a peace and harmony, people-pleaser type of person unfortunately. But yes, there are other options. Thanks pennyannie.

[pennyannie in reply to Alternatively]

Ditto

[LtAngua52]

I don't have any useful information but I have an appointment with them next week. This sounds great! I've been on T3 for 8 years though and hope they can prescribe my current dose, not start small. It's been 7 months since my last blood test too. Did they ask for them? Please DM me if best for you. Congratulations though! I hope you will feel better soon 🙂

[Alternatively in reply to LtAngua52]

Hi LtAngua52, Yes they do, they send you an appointment confirmation with a questionnaire attached and on this you have to upload your blood test results plus evidence that you are being treated by the NhS for your condition.

Hope this is helpful.

[LtAngua52 in reply to Alternatively]

Thank you. They haven't told me this. My last blood test was 7 months ago so that may be a problem! I've been on combination therapy for years so it will be interesting to see what they say.

[Alternatively in reply to LtAngua52]

Yes, it helps to know a bit about the Roseway procedure before your first time with them. With a bit of luck they will accept your last blood test.

[Bertwills]

I and another member found that the phone appointment system didn’t work very well. I waited 45 minutes before phoning to check why no call. Still had to wait another 20 minutes so give yourself plenty of time to wait! Don’t book an appointment during school holidays as the prescriber works from home with her children there so the timetable suffers.

[pennyannie in reply to Bertwills]

I would imagine as this service grows they will put systems in place to cope with the demand.

[Alternatively in reply to Bertwills]

I was possibly lucky, but my consultation call was bang on time the other day.