Need to get things straight in my head!

[Murphysmum]

Apologies, long post alert!! 🚨

So, I’ve been posting in here quite regularly for th me last year or so, and between the responses I’ve had and the hours I’ve spent reading, I’ve learned so much and feel I am definitely on the road to recovery.

I am having a final appointment with Dr Toft this week and I want to make the most of it. In order to do that I need some help in getting things straight in my head - not easy!

Some folks will be reasonably familiar with my journey and results but to give a brief overview - “crash” in sept ‘17, very low thyroid levels then, low hr, high bp and every hypothyroid symptom going. Took me until feb/March 18 to partly return to normal life and have spent since then supplementing, eating healthily and increasing the amount of exercise I do back to previous levels. During this time my levo doses have been increased and decreased on gp advice, then in sept 18 I saw Dr Toft, who has recommended two increases. The last of these was up to 200mcg which was too high and I have reduced back to 175mcg recently.

When I saw him, Dr T didn’t think I needed T3 so we went with the dose increase. Hypo symptoms have pretty much gone, bar the odd day but tbh, that was always the case historically. But, as time has gone on, the muscle weakness and heavy feeling in my limbs has got worse and is now the overriding symptom, alongside the brain fog which has been constant. The feeling of concrete in my limbs wasn’t something I noticed at the start of all this.

Interestingly, when I dropped my levo dose down a few weeks back, this has improved the heaviness. It’s not gone, not by a long shot, but it’s much better. Brain fog just the same, no increase in other symptoms. I’m guessing the levels in my system are somewhere between 200 and 175 until I’m on a lower dose for a while?

So, would T3 help this? Or do I just alternate to get to a level of 180mcg ish and put up with the muscle weakness? Or is the increase in the heaviness a kind of ‘toxic’ effect of too much levo? Do I actually need to reduce my levo further and introduce T3? Or just reduce the levo full stop?

I’m still supplementing with iron, b complex, magnesium, vit c and Vit D with mk2 and most of my levels are reasonable now. Ferritin needs increasing a bit so working on that.

Sorry for such a long winded post, I just really can’t get my head around what’s going on and how to improve further. I think I’m so very nearly back to normal but this kind of muscle wastage despite exercising worries and frustrates me. I just want to be straight in my own mind before I go for my appointment where my foggy mind ceases up and I don’t get the most out of it!

Any advice would be appreciated, I can post my latest results if needs be although they were based in a 200mcg dose.

TIA 🤗

[SlowDragon Administrator]

Personally I think some of us find the high dose Levothyroxine needed to push FT3 up high enough, on just Levothyroxine is almost toxic

But then when reducing dose of Levo, this improves some symptoms caused by high FT4, but makes as others worse as FT3 levels then start to drop

Yes I would suggest you push for trial of T3

I find it takes at least 10 weeks to rebalance after dose reduction in Levothyroxine

[Murphysmum in reply to SlowDragon]

Thank you SlowDragon , this is exactly what I was wondering.

It seems I am starting to get the hang of this hypothingmy!

I think this was what Dr Toft was trying to determine, whether I could tolerate the higher dose or not, and although the numbers looked better, and the hypo symptoms went (cold, no energy, head pressure, dizziness etc) the feeling of heaviness gradually got worse. And despite doing the same strenuous hike with the dog every morning, every morning feels like the first time!

And interestingly, I too find a dose change (although I feel it within a couple of days) takes 10-12 weeks to settle. Everything takes soooo looong 😩

Thank you, I will ask for T3, even though he said I didn’t need it first item around 😳

[greygoose]

So, your results in this post:

healthunlocked.com/thyroidu...

were on 200 mcg levo? I find it amazing that an 'eminent' thyroid doctor can look at those results and say you don't need T3! It's just rediculous having to take all that levo just to get your FT3 to the top of the range.

Admittedly, if you reduced your levo (slowly) down so that your FT4 dropped to, say, 19, your conversion would improve slightly, but not enough to mean that you didn't need some T3 added.

It could be that levo just isn't right for you. It was never right for me. I couldn't stand synthetic levo and I couldn't stand NDT because of the T4. And I converted very well! So, adding T3 to a much reduced dose of levo might possibly make all the difference to you. If I were you, I would push for T3.

[Murphysmum in reply to greygoose]

Yes @greygoose! The highest dose I have ever had and although as I’ve said, the hypo symptoms went, the heaviness and lack of muscle tone/build/maintain, got worse! I was quite disappointed when I came out of my appointment as I thought he might just give me T3 there and then - instead we’ve faded about increasing doses for six months. Maybe he has to justify his decision.

What I can’t get is that I didn’t feel well (ie, retained hypo symptoms) on 175mcg before, plus the heaviness thing, then on 200mcg the hypo symptoms have all but gone ( the occasional dizzy spell or head pressure maybe once a week) but the heaviness and brain fog have got worse. So now that I’ve reduced again presumably the ‘toxic’ effects have reduced and I’m in a sweeter spot on the way back down to 175? I say sweeter as I guess symptoms will return slowly and let’s face it, I’m not humphing this body around forever, it’s so heavy!

When you say you couldn’t ever stand levo - was that right from the off? I’ve been on it now for around 15 years and until my ‘crash’ I never thought it a problem. Saying that though, I always did have weird dizzy days where I refused to drive (not great when your job involves it!) and my motivation has always been very sporadic. I wonder if this is a levo thing, or just a me thing?

Dr T said last time that he didn’t see a problem with my conversion, and from what I’ve seen on here, mine is by far not the worst, but it’s all based on how we feel right? I know I’ve never had the heaviness thing or the brain fog (as badly) in the past and I can’t wait to get rid of it! I read a paper that said the highest levels of T3 use in the body is in the muscles and brain, so this seems to make sense with how I feel.

[greygoose in reply to Murphysmum]

Yes, right from the start. I didn't actually have much in the way of hypo symptoms at the time I was diagnosed (by accident!), although I had had in the past, just rapid weight-gain. But, I developed an awful lot of them once I started levo, and put on weight even faster! I then went on to T4+T3, and that was better, but I could never get enough T3 prescribed. I'm pretty certain I have thyroid hormone resistance at a cellular level.

On NDT, same problem, but I was actually worse than on T4+T3. I got up to 6 grains, but was just getting worse and worse. I can only function on T3 only.

I don't know what to make of Dr Toft, so I prefer not to comment. But I hardly think it's normal to need an FT4 of 30 just to get 6.whatever of FT3. If it were normal, the FT4 range would be totally different!

[Murphysmum in reply to greygoose]

😂 again, thank you! Im not sure what to make of him either.... I had such great hopes! Hey, it remains to be seen what Wednesday brings.

I only had a swollen neck when I was diagnosed, none of the classic hypo symptoms either but I did find in hindsight that I’d felt very lethargic. Just thought I was having a lazy spell!

I will push for T3 - do we know what a reasonable starting level would be? We’re all individual I know but reduce levo more, add small amount of T3, or reduce levo lots ie, 100mcg add increasing T3? I just don’t know what to expect.

[greygoose in reply to Murphysmum]

It's not a good idea to reduce levo lots in one go. Reductions should only be 25 mcg every six weeks. And the starter dose for T3 should be 5 mcg. That's reasonable, he can't really object to that! And, he's retiring soon, so probably doesn't care anyway! lol Stay on that for six weeks, retest and see how it's going. Adding in T3 will lower the FT4 anyway. It all has to be done slowly and gradually.

[Murphysmum in reply to greygoose]

So having just reduced my levo to 175mcg (which was deemed to high many months ago!) should I reduce again before adding T3 or try at that dose?

I forget the results now but when I was previously on this dose I had rt3 issues. I didn’t test that this time.

[greygoose in reply to Murphysmum]

No, don't reduce any more until you get the T3. If you reduce your levo, your FT3 will go down, too.

Of course you had rT3 'issues'. Although they're not really issues. With an FT4 of 30 you would expect to have high rT3. The body has to get rid of all that T4 somehow.

[Murphysmum in reply to greygoose]

greygoose , is my very, very low tsh of any relevance in those results? It was 0.005 or something ridiculous.

Obviously I’ve dropped my levo dose so it’ll change but if it’s that low on levo, would that be a problem for T3?

I mean, I think it’s not dreadfully relevant from what I read on here but I just want to be fore-armed!

[greygoose in reply to Murphysmum]

One doesn't decide if one needs T3 by looking at the TSH. The TSH has nothing to do with it. And, as it's already suppressed, taking T3 won't make much difference to it.

0.005 is not rediculous at all, it's what one would expect on 200 mcg levo. And it's low because you don't need it anymore. The pituitary has sensed that there's enough circulating T4/T3 in the blood and has almost ceased production of TSH - why would it continue to make it if the thyroid no-longer needs stimulating?

By how much have you reduced your levo? It would need to be reduced an awful lot to raise that TSH. And that is why we don't dose by the TSH.

[Murphysmum in reply to greygoose]

Thank you for that explanation. I don’t know if it’s the brain fog or not but despite my biomedical background I still struggle to be able to think things through logically!

I realise the decision to take T3 is not related to tsh, I just wondered if it was already suppressed, would that concern the medics. I don’t for a minute put Dr T in with the masses, but I just wanted to ‘get it straight in my head’ once again.

Thank you, and hopefully I’ll be updating this post tomorrow having got a script for T3 🤞🏻

[greygoose in reply to Murphysmum]

It usually concerns the medics, anyway. They've been taught to fear it - often without really knowing why.

Good luck for tomorrow! Fingers crossed!

[SlowDragon Administrator]

Have you had DIO2 DNA test?

thyroiduk.org.uk/tuk/testin...

Or this one? (Sometimes on offer at £99)

bluehorizonmedicals.co.uk/t...

[Murphysmum in reply to SlowDragon]

No, but I have considered it @slowdragon

The only thing that stops me is that levo has worked for me for the last 13 or so years, on the whole. I question if maybe the dizzy spells etc were it not working effectively but I’ve always functioned normally until last year. If I had the the DIO2 mutation, wouldn’t it mean l would never have been well, not just laterally?

[humanbean]

I’m still supplementing with iron

How long have you been supplementing iron for?

What supplement do you take?

What dose do you take?

Have you ever had a full iron panel done? One which measured serum iron, ferritin and transferrin saturation all at the same time?

One problem with relying on just a ferritin result to determine iron supplementation is that ferritin might remain quite low while serum iron and saturation both shoot up sky high. Unless they are tested you would never know.

[Murphysmum in reply to humanbean]

That sounded bad, now I read it back!

I hadn’t supplemented with iron until around last November when bloods revealed that despite eating more pate and black pudding, my ferritin levels hadn’t budged, in fact, I think they’d dropped a bit. So I took a course of iron tablets, ferrous fumarate I think.

Recent bloods show it still hasn’t come up much so I’m now taking a Thorne supplement (can’t recall right now what it’s called exactly but the one everyone here recommends!) and I’ll retest when they’re done.

I did ask my gp for a full iron count but the poo-pooed it. Same when I asked to be checked for PA. It seems people trying to help themselves get better is unnecessary 🙄

[humanbean in reply to Murphysmum]

I've never seen anyone recommending a Thorne product for iron, but recommendations for a Basic B Complex by Thorne are common on the forum (I take it myself).

For some reason that I don't understand there are lots of people who think that folate has something to do with iron, and they buy a B Complex or folic acid or a folate supplement to improve their iron levels. Folate is a B Vitamin, it is not related to iron. Folic acid is a synthetic substance that (with luck) will be converted into folate in the body, but some people - e.g. those with an MTHFR problem - can't do the conversion very efficiently. Folate is helpful for various reasons and is essential for good health, but it won't improve iron or ferritin levels.

This is worth reading on the subject of folic acid and folate :

chriskresser.com/folate-vs-...

To find out your ferritin, your serum iron and your transferrin saturation this finger-prick test is the best one I know of (in terms of convenience and price and what results are returned) and you can get 10% off the usual price :

medichecks.com/iron-tests/i...

healthunlocked.com/thyroidu...

The situation you want to avoid is one where serum iron is low and ferritin is high, or ferritin is low and serum iron is high. Supplementing in either of those situations could make the higher level substance zoom up higher while the lower level substance barely changes.

Please note that ferrous fumarate IS a bona-fide iron supplement. However I wouldn't recommend taking it simply on the basis of discovering a low ferritin level, because you could have high serum iron.

[Murphysmum]

Thank you humanbean

I do realise the difference between iron and folate. I background is in medical research, albeit a while ago now, but thanks anyway!

I take the Igennus b complex and Thorne iron bisglycinate.

When last tested my iron levels wasn’t fabulous either, so there’s room for manoeuvre there but I will be retesting when I finish this pack.

My concern is that my ferritin is very slow to budge and that my serum iron may then be fine..... not sure what I do then!

[Murphysmum]

Woohoo! greygoose , SlowDragon - got a script for a trial of T3.

Here’s hoping it works now. My conversion numbers obviously aren’t that bad as Dr T said he was trying it because he couldn’t really decide what else to do with me!

Feeling delighted that I might finally feel better, but also slightly concerned my thyroid might be fine... 😬

All will become clear in the next few months, hopefully

[SlowDragon Administrator in reply to Murphysmum]

Brilliant

Start slowly

What dose have you been advised to start on?

2 x 5mcg?

[Murphysmum in reply to SlowDragon]

Yep. And a reduction in my levo to 125mcg.

Thinking I should give that a few days before adding in T3?

[SlowDragon Administrator in reply to Murphysmum]

Reduction from 175mcg to 125mcg may be too much

What were your latest FT4 and FT3 on 175mcg dose?

Personally I would perhaps only reduce to 150mcg initially.

Personally I only reduced by 12.5mcg for first 4-6 days and started on 2 x 2.5mcg (yes it was a speck of dust!) It was still was quite a change, a noticeable "whoosh" with first few doses

Tablets cut easily with very sharp craft scalpel.

nisbets.co.uk/pme-sugarcraf...

After a week I then reduced Levo further 12.5mcg (i.e. Total of 25mcg) and increased T3 to 2 x 5mcg. Held at that dose for 6-8 weeks and retested. More on my profile.

Always get same brand of T3

Is this going to be private prescription? If so presumably you know how to order Thybon Henning from Germany ?

Prescription needs to read

Liothyronine 20mcg x 100 tablets

If NHS prescription then would recommend Morningside Healthcare T3

[Murphysmum in reply to SlowDragon]

Thank you, I may try that approach! I did ask if that wasn’t too big a jump but ‘nope’ said Dr T.

I’m not entirely sure how go about getting it from germany - would I just get the script and ten send it off?

(I didn’t even see the script today)

[SlowDragon Administrator in reply to Murphysmum]

Did you not get the prescription to take away?

How are you getting T3 otherwise

List of German pharmacies that currently accept UK prescriptions

Thybon Henning only comes in boxes of 100 tablets

thyroiduk.org.uk/tuk/treatm...

Personally I couldn't have swapped 50mcg Levothyroxine for 2 x 5mcg T3. Even the 25mcg reduction was too much after a few weeks. But I did go from being virtually immobile on just Levothyroxine to almost fully recovered and walking approximately 10,000 steps every day.

[Murphysmum in reply to SlowDragon]

I was dispensed the T3 at the spire hospital. By possibly the nicest pharmacist lady ever!

So I guess in future I just ask for the script, written as you say, and then I send it off? Fab. If it works it’s a small(ish) expense to pay, but!

As I’ve said, I’m kind of well again now. This time last year I couldn’t stand for more than a few minutes and I slept all the time. Not to mention all the other oddities like head pressure, tinnitus etc etc.

I just feel like something is holding me back. I cannot get fitter (despite 10000 or more(😜) steps and other exercises) and all my limbs feel heavy. Everything is a struggle and just as hard as when I did it the first time! Oh how I long to get fitter again... 🤞🏻

[SlowDragon Administrator in reply to Murphysmum]

Was this 20mcg Liothyronine?

Which brand?

Didn't it cost the earth?

UK T3 is £204 per 28 tablets

German T3 is 31 Euro for 100 tablets

[Murphysmum in reply to SlowDragon]

Erm, having only just collected it..... it was sigmapharm and they’re 5mcg tablets?

It was £127 for 45 days 😳😳😳

[SlowDragon Administrator in reply to Murphysmum]

So that's approx £1.40 per tablet

Pretty reasonable. I thought 5mcg were much more expensive than 20mcg

£204 for UK 20mcg tablets x 28 (works out at £1.80 per 5mcg)

Once dose is increased to 15mcg or 20mcg per day 20mcg tablets from Germany would be cheaper (usually have to cut into 1/4's and take in 3 x divided doses)

German 20mcg T3 is approx 9pence per 5mcg - obviously you have to cut it up

31 Euro per 100 tablets plus 8 Euro p&p

39 Euro per 100 = £34 per 100

Per 20mcg tablet is 34pence.

Per 5mcg is just 8.5 pence

[Murphysmum in reply to SlowDragon]

Fab, thank you for all that detail.

Yes, I guess they weren’t so bad and hubby reckons what price your health.... personally I’m still thinking obtaining elsewhere might be better!!

I know it’s a very individual thing but how long did it take for you to settle on T3? And did you need many increases?

I’m well used to the T4 system and I guess I’m feeling a little bit unsure of what to expect now. All symptoms gone I suppose is the end goal!

[SlowDragon Administrator in reply to Murphysmum]

Full details on my profile

Change of brand was troublesome

Any dose change I usually initially feel better, then weeks 5-8 approx feel much worse. Have to hold tight, and eventually it slowly improves

Timing of doses can be important

Breakthrough came once I settled on 3 doses at 8 hours apart

[SlowDragon Administrator in reply to Murphysmum]

Well on only Levothyroxine I was struggling to walk 100 meters.

[Murphysmum in reply to SlowDragon]

Wow. I was only that bad for a few weeks after my “crash”

[greygoose in reply to Murphysmum]

Well done, you! But, that has completely destroyed what little faith I might have had in Dr T, that he only gave you T3 because he didn't know what else to do! Just goes to show how superficial his knowledge of thyroid is.

OK, as he's prescribed you 10 mcg T3, you can reduce your levo by 50 mcg. And do that on the same day as you start the T3 - a straight swop.

[Murphysmum in reply to greygoose]

Thanks greygoose.

He said (kind of ehatvive wondered) that if I had previously been fine on T4, he didn’t see why I wouldn’t be fine now. Clearly I had some kind of thyroid “crash” which no one has managed to tell me what actually happened, and I’m working my way back to ‘normal’. But 18 months in and still finding muscle weakness and wastage, and an inability to get fitter at all, this is just not the me of old, so something’s changed 🤷🏼‍♀️.

Thank you for clarifying the doses - I feel happy doing that.

[greygoose in reply to Murphysmum]

Seems to me he doesn't 'see' very much at all. But, that's endos for you!

[Murphysmum in reply to greygoose]

😂

Fingers crossed my gut is right... and he’s helped in my T3 quest

[greygoose in reply to Murphysmum]

Oh, yes, there is that, of course.